Fine thanks how are you?

Where to even start, I’m not doing so good at the moment. I’m not depressed just a bit flat but I’m terrified that flat can become poorly in an instant.

I can hear myself saying to people ‘no I’m fine just a bit flat’ and I know that’s how it started last time I became depressed. I was utterly broken by the time I admitted it to anyone. Right now though I really am just a bit flat.

I’ve noticed my speech is slower and I’m struggling for my words so I know I need to be careful. I’m exhausted too, like a sort of tiredness I can’t begin to explain. Like snow and ice on a steep bank it needs the gritter to help things along I need to employ my own self care strategies to help me up and over this bank.

It all started two weeks ago when I had a few nights poor disrupted sleep with no reason whythat I can think of. Now for me one night lack of sleep leaves me tired, two nights leaves me exhausted and three nights leads me to a place of either elation or dismay. By night three my body tends to give up sleeping all together and my mental state begins to become altered.

I crave stability like a smoker craves nicotine, I’d love to be ‘well’ and meds free but I know that’s not likely. Last year during an elevated period in mood my antidepressants were quite rightly stopped but I’m wondering whether I ought to start them again. I can’t risk becoming poorly again.

It feels like giving in to the illness to consider more meds again but I have greater considerations than this. I used some PRN meds I have in at home and slept better last night which has left me in a position to be able to write this, my thinking isn’t up to normal speed but it is far better than it was.

I’m not low, I’m not having any dark thoughts but equally I know I’m not right. I’m fortunate to have an observant and fairly fabulous husband (don’t tell him I said so) and some great friends who pointed out they can see I’m not great as I have a tendency to bury my head in the sand until its too late.

I’m writing this blog partly as a reminder to myself that things don’t have to always get worse and partly to admit out loud that things aren’t 100% but mostly to show the importance of recognising a slight dip and managing it. It’s not something I have managed well until the past couple of years.

A bipolar lockdown…

I don’t remember this pandemic starting, I was still really poorly with depression and half way through a course of ECT both of which affected my memory quite profoundly. I ‘woke up’ mid April to find my world had changed, THE world had changed. It’s strange now hearing everyone talk about how they felt a year ago and what they were doing in relation to Covid but not having a memory at all. My husband used to encourage me to use my exercise time each day to go for a walk but I didn’t understand why we couldn’t take a drive out to the countryside.

I don’t remember when I started to realise what was going on but I remember vividly the feelings it generated in me. Fear mainly. I remember watching the news each day beyond shocked when the figures were relayed to us. I remember the Claps for Carers and being quietly proud I’m a nurse whilst feeling guilt at not being part of the ‘war effort’.

When I returned to work the last week in May I was already anxious to return, would I remember it? Would I still be a good nurse? Then I drove that first day and there was barely any traffic on the roads. I know then this was real, something had changed. Those almost surreal death figures were real. We were all living through a nightmare.

I returned to my role and saw patients again I felt like I was doing my bit, not on the front line by any stretch of the imagination but people, now more than ever, are suffering with their mental health and that is my niche. I was doing what I love and loving what I do, I’m like a stick of rock, cut me in half and it says ‘nurse’.

At the end of summer, early autumn time ish I was asked to take part in a Covid risk assessment at work. Due to my BMI (Thanks Quitiapine) and I think my diagnosis I was placed under restrictions. I couldn’t see patients face to face anymore, I was devastated, I felt aggrieved that I had been persuaded to take part in the risk assessment as its voluntary however at the same time I understand why. I was asked to work from home but I explained I couldn’t partly because I have no where confidential to work and partly, mainly really, because it would do no good to my already fragile just recovering mental health.

I couldn’t bear the thought of working in such isolation so work were great and agreed I could work in an office on my own at one of our bases. As it happens the office I am in is about four metres long so people can still pop by at the door and say hi whilst remaining socially distanced. I can go around the building as needed so long as I wear my personal protective equipment and observe social distancing but then everybody does this now.

I decided if I was going to be in an office on my own for the foreseeable I would bring my coffee machine in which winds everyone up because it smells amazing but it also means I am not having to touch the kettle. Gotta find the positives yeah?

Fast forward to October and my husband and I both tested positive with Covid, it is the most poorly I have ever been physically. I was convinced I was dying yet praise God after about 7-10 days we both started to recover. Things changed for me mentally at this point. I had really struggled with isolating and not experiencing day light or the wind on my face as we don’t have any outdoor space. I began to experience anxiety which I have never known before. I can’t even watch the news late at night as it’s too close to bed and I know would affect my sleep.

It was a physical feeling that no amount of distraction could alleviate, it was my head spinning, my stomach churning and my chest beating so fast. The reason for my anxiety? I was terrified that someone was going to report me as a contact and I would have to isolate again. I was afraid of contracting it again but the idea of isolating and my mental health was my predominant issue.

I am doing better with the anxiety but it has given me an insight that I could never learn from a textbook. I’m still working in an office on my own and still not patient facing, I do all of my contacts by telephone or video link. I’m feeling really guilty about this with my colleagues though, like I’m not pulling my weight. I know there are still colleagues working from home but it’s not them I compare myself to its those working full time patient facing.

Now we are in the third lockdown of this pandemic I am as anxious as anyone else about catching it (again) but not in an excessive anxious state like I was. It’s not even a year yet since I finished my course of ECT and within that time I have had a hypomanic episode and had my antidepressant removed as a consequence of this but I am doing well. My mental health is stable for now but I know I need to monitor the tiny details for any change in that.

My mental health is fragile, more fragile than most people realise because I’m so good at showing that front. I need to treat it like a crystal vase and not just ensure that it doesn’t get smashed by dropping it but also watch it doesn’t get chipped. I’m flat at the moment, not low but definitely flat, it worries me everyday. I need to stop berating myself for not giving 100% to the team and recognise that I give all I have and a little bit more because I’m dealing with my mental health on a daily basis too. I need to keep fighting this virus in the same way we all are and remember that my experiences of the early days ie not remembering are just part of who I am.

I’m not the nurse I used to be but I’m happy with the nurse I am

I’ve had a few moments over the past couple of weeks where I have realised I’m not the nurse I used to be which made me sad at first but after some soul searching I’ve decided I might not be the nurse I used to be but I am a nurse I’m happy being.

Let me give you some context, I’ve had the roughest few years imaginable with a couple of episodes of major depression and a couple of bouts of hypomania. It’s been hard on me but also on those around me who often had to stand back and watch whilst the bipolar beast took over and fought against me.

During both episodes of depression I had ECT which undoubtedly has affected my memory however I don’t regret having it. ECT saved my life, which is a whole other blog post, as I was in a near vegetative state and had begun to forget to take food or fluids on board. It saved my life but I do feel that it, along with the depression, that I’m a different person now.

I’ve lost my spontaneity, I’ve lost my ability to speak out without rehearsing what I’m going to say, I’ve lost the ability to read anything in depth and certainly couldn’t read a novel these days. I’m not as quick witted as I used to be. I worry all of this means I have lost the ability to nurse. I’d like to go back to study but I’m not sure I would cope anymore when I have a couple of degrees and a post grad so I know it used to be there.

Nursing, especially mental health nursing which is what I do is so much more than remembering facts and figures though or about being quick witted, its about caring and compassion and love.

I realised this week that I need to stop comparing myself to my colleagues, I might not be fastest to come up with the big appropriate word but that doesn’t matter, I’m still an articulate person it just might take me a minute or so to think of the words I need. I nurse everyday with love in my heart, nursing with the mindset of what if that was me or my relative, I hope I always nurse with care and compassion.

No illness or treatment can take away the intrinsic parts of my nursing career, I hope the compassion shines through even when my eyes are heavy and I am weary. That is what makes a nurse.

I do have something extra to give in my lived experience, I know how dehumanising the ‘system’ can be, how the system meant to protect you can actually prove debilitating in itself. I know how it feels when professionals talk about me in front of me without involving me. I don’t want to be that clinician, I want to be the nurse I am capable of being.

So you see I am the best version of me, I am the nurse I want to be in spite of illness and treatment. I’m not the nurse I used to be but I’m happy with the nurse I am.

The UnChristmassy Christmas

T’was the night before Christmas and all through the house nothing was stiring not even a mouse. The reason nothing was stirring is because no one had to rush around as no visitors were expected, this year was going to be different. Very different.

We got up and ensured daughter (14) still enjoyed her morning opening her gifts then simply pottered to fill time before getting dressed and going to the in-laws and the out-laws to stand on doorstep wearing masks as we exchanged gifts. We know the law said we could go in but to us the risk was too great. My husband and I tested positive at end of October but daughter didn’t so we are doing everything possible to keep her safe knowing how hideous this virus is.

Also our parents are old and husband works in a school and me as a nurse so the last thing we want is to carry something in to them. I know some probably think we are being excessive but I don’t think that’s possible at the moment.

Since we had Covid I have experienced the most crushing anxiety which is not something I have suffered with before but something which is utterly debilitating. I am afraid of catching it again and afraid of having to isolate again as I found this very difficult. We live in an upstairs flat with no outdoor space so I felt trapped and claustrophobic. Each time the phone rings I am paranoid its going to be track and trace telling me to isolate. Daft I know.

We just realised we forgot to pull the crackers yesterday and that sums it up, it was the most UnChristmassy Christmas ever. Everything else was there, the pantomime of Christmas Day was played as charades are but we forgot the crackers and even the pigs in blankets so the parts that make the wheel go round were missing in a sad sort of way. The crackers were there but not pulled and the pigs in blanket were in the fridge but not cooked, Christmas Day was had but some of the trimmings were missing. When I say the trimmings I obviously mean people, our loved ones were not there and that felt strange.

We did add my Nanna into our rounds earlier in the day, she is 94 and quite spectacular for her age but even so we couldn’t get her to the front door it was too cold so we went round to her living room french doors and waved through the glass. We rang on speakerphone and she answered on speakerphone too so it was the real life version of zoom especially since she kept putting us on mute accidentally!!! All I want to do is hug my Nanna.

When I can keep the anxiety at bay I am optimistic for a better 2021 and that’s why I’m writing this, not because I think you want to read my woes about Christmas but because I want to have a record to look back and know that things did improve.

We are still blessed though we know that, we weren’t alone and we weren’t ill. It was just different. Xx

Because Bipolar doesn’t take a day off for Christmas…

Mental illness (bipolar in my case) doesn’t take a day off for Christmas, if anything it becomes a little harder to manage. Being out of routine is difficult for most people but for people with bipolar it can be catastrophic. Catastrophic may seem excessive but being out of routine and missing meds for example can be the start of a very slippery slope and not the sort of slippery slope in a pretty white Christmas.

Keeping a regular routine despite the festivities is vital, sleep being the most important of all. Keeping to a regular sleep pattern is probably easier to manage this year than any given there are no parties or events because of Covid but it is still a ‘different’ time of year. I know my routine can be thrown by something as simple as staying up late to watch a film, it can mean I forget to take my meds at usual time or that I am tired the next day with less sleep if I go to bed late and we all know where tiredness leads to. The fork in the road for tiredness is a major trigger for me to go one of two directions and neither have a good destination. One night tiredness and I’m tired, two nights and I’m exhausted and three nights generally all of a sudden I don’t feel like I need sleep at all.

Looking after oneself is vitally important, self care is essential. Self care can be something as simple as leaving enough time to bathe in peace or taking five minutes out to enjoy a hot chocolate. It can also be about saying NO. Something lots of people, regardless of mental illness are not so great at is saying no when being asked to either take on extra tasks or enter into additional festivities when you have no energy left. Self care is preserving that bit of energy and saying no when you feel like you should say yes or even harder saying no when you want to say yes but know its the sensible option.

Probably the most important part of self care for me is making sure I drink enough, I’m on a high dose of lithium so need to drink sufficient to keep me well. During the holidays its easy to be seduced by all the nice fizzy drinks (or the odd alcoholic drink) and not drink enough water or squash. Repeat after me girl… DRINK!!!

I spent Christmas 2010 on a psychiatric ward and Christmas 2016 and 2019 having ECT so don’t remember them, looking at my patterns we have ruled out a seasonal element so I do wonder if the additional pressures of managing work whilst shopping for Christmas and attending nights out, church events and preparing the dinner all whilst my hubby who is an entertainer and is out most of December is a factor. Turns out I’m great at telling people to say no but not great at doing it myself! I won’t even begin to share with you a Christmas with Hypomania cos that’s a whole other story…

Each year now I am determined to make it up to my daughter who at age 14 has missed out on three Christmas’s with her mum but doing so I put more pressure on myself. The impact of Covid this year has been mainly negative on my mental health, anxiety like I have never known, but for Christmas it has actually helped me to not have the parties, not have the pressure of people coming over for Christmas dinner (as much as I usually love that I do find it pressured), I haven’t had to say no because this dreadful virus has taken those decisions for me.

This year I have prepared earlier than usual and ticked things off my list which has relieved some of the pressure. I have ordered my meds early to relieve the pressure of that shiiiiiit I have run out moment. I have ensured that my husband has the number for the crisis team whilst hoping and praying he will not need it. I am not being too hard on myself for the three Christmas’s I have missed, if I concentrate on that I won’t be able to make new memories will I?

Mental illness does not take a day off for Christmas, if anything it becomes more difficult to manage so if this is you then plan, plan for a safe relaxed Christmas, it’s one day and the world won’t stop if you forgot the stuffing or didn’t wrap great aunt Doris’s gift. All I want for Christmas is continues stability into next year which I am enjoying at the moment albeit with the constant niggle of ‘when next?’. I can only live in the moment though and hope for the best.

So give yourself a break and remind yourself that your health is the most important gift of all, I’m not guaranteeing you wellness just sharing what I have learned the hard way in the hope it might help you too. I truly hope you have have a joy filled and peaceful Christmas.

Thank you

After a recent hypomanic episode (which is documented in previous blog posts) I am ‘coming around’ to realise the gravity of the past three weeks and becoming aware how many thanks I owe those around me so here is a letter thanking those folk:

Dear family/friend/work colleague/employer,

It’s been a tough few weeks but I thank you for seeing that, for recognising how difficult things were for me and for enabling me to come out the other end with my dignity intact.

My dear husband and daughter were never sure what was going to come through the door next as postman pat delivered everything other than his black and white cat (if you are too young for this reference I don’t want to know!). One day I received Magic Eye books which I had become slightly obsessed with, the next day six Kazoo’s followed by 100 toilet rolls the day after (because people were panic buying go figure!) so you see how patient they were with me. They were patient, or very deep sleepers, when I got up during the night because sleep eluded me even with sleeping meds. Add the insomnia to Kazoo’s and it becomes a recipe for divorce lol

I probably ought to have taken some time off work in hindsight but a combination of me having been placed in a room on my own because of my Covid risk assessment so I could shut the door when things were getting difficult and a good friend helped me stay and to a point function.

My friend at work looked out for me, she bluntly told me when I needed more meds, she drove me to and from work because meds meant I could’ve drive. She didn’t mock when I chatted inainly about the magic eye books or the life cycle of a rose I was watching out of my office window. I was restless and irritable and so my office door was closed most of the time so I could pace so she would pop her head in to check I was ok. I wasn’t ok which she could see despite my protestations to the contrary. A couple of other friends close and far away geographically text regularly to see how I was and despite me saying ‘fine’ they just knew and enquired further, I really am surrounded by the best people.

My work colleagues are not daft, in addition they are all mental health nurses or psychiatrists they must have noticed my elation but they did not mention this, only the one friend I mentioned above and a psychiatrist friend knew exactly how difficult things really were for me. It was like someone stole the euphoria from me, yes I was easily over stimulated and laughed a little louder but for the most past I was just so restless and deeply uncomfortable, surely I am entitled to euphoria with it? Like I say work colleagues must have noticed things but were too polite or maybe too uncomfortable to say something. I hope I didn’t make anyone feel uncomfortable.

My employer was pretty good in supporting me to stay at work when going home would have been the easy option. They accepted that my productivity was reduced over those weeks but that this is better than a productivity of zero should I have gone home. They checked in a couple of times to make sure I was ok and I know that one of my managers asked my work friend if I was ok and trusted her to ‘manage me’ as a friend not a patient which she achieved. It’s hard to draw those lines but I am someone else’s patient I just want others around me to be my friends.

I’m also thankful to my care team, my CPN who has been great listening to me garble on and sorting out meds changes with my consultant. My consultant who has sorted the prescriptions I needed without having any frustrations. The system ran smoothly and for that I am thankful.

I’m thankful for my faith which gets me up each morning and guides me through the rough times during the day before putting me to bed at night. I’m going to blog on this as a separate post as I think my faith massively influences my life with mental illness. Thank you God.

So you I see I have many people to thank, I hope I would be there for each and everyone of them if they needed it. It’s been a stressful couple of weeks but I have learned so much about myself.

Thanks so much

C. X

Hypomania – Part two

I’m not sure what I’m writing here or how long it will be I just know how much I don’t like this and I wanted to share that with you in more than the constraints of a tweet. To be fair I have a LOT of words at the moment and if my keyboard functions as fast as my mouth I should get a blog post no bother at all!

So many people see hypomania as being this exciting ‘safe’ ‘mania lite’ with all the fun of mania but without the destruction it wreaks. I’m on week three of this episode and I can assure you that this is not what I am experiencing. Now don’t get me wrong I know it is different for everyone so I can only tell you about my experiences.

Yes it has been easy to be over stimulated.

Yes I have laughed a little louder.

But for the most part I have felt restless, irritable and generally horrible like I am fighting myself. I have paced and paced and talked and talked all to try and evacuate my body of this electricity that burns through my veins. Until medication changes were felt I was convinced I could smell excrement and that I smelled of it, I know now that was a hallucination.

Today I feel ‘almost’ normal with sufficient diazepam in my system but equally I am very aware when my next dose is due as are those around me. The diazepam is ‘holding’ me this week which it didn’t for the past two weeks and for that I am exceptionally grateful. I am grateful for the care team around me who trust me to manage this episode with confidence. They know that the first thing I will do when I am well enough is stop the diazepam which I guess is why they trust me to self manage. Better than a care team I also have a ‘Claire Team’ lol my hubby and circle of friends who will call me out and tell me I need my next dose. Those people have allowed me to weather this storm without my dignity being impaired.

I hate this. I know I have my recovery headlights on and I am navigating my way back to wellness but I hate what this illness steals from me. It takes my choices and my personality, I will always be known as the woman with bipolar. I want to be and hope I am so much more than my diagnosis. Right now I am my diagnosis.

I am the first to correct people who say ‘I am bipolar’ to suggest they say ‘I have bipolar’ but right now in this moment I am bipolar. I am bipolar and I hate it.

This past three weeks are probably the closest I have come to stepping over from hypomania to mania, in hindsight there is so much I don’t remember, like the olfactory hallucinations I mentioned earlier.

I feel aggrieved that I was left to manage hypomania without at least a small dose of euphoria. I feel hard done to. But that’s this illness isn’t it, its not text book, its certainly not linear. It’s more like an ECG trace in its appearance than a metronome, there is nothing regular about its course.

So now on week three I am left to pick up the pieces, to apologise to those I was inappropriate with, to thank those who have been and continue to be there for me. I need to find homes for all of the things I bought with no impulse control (think Magic Eye books and Kazoo’s). I need to concentrate on getting back to myself instead of concentrating on the happenings which I’m embarrassed about or where I have lost dignity.

It’s easy to think because I feel more normal now that I am well but I am still on considerable medication. Most of all I need to be kind to myself.

The REAL cost of Priadel discontinuation; Human AND Financial

Where do I start about my feelings on Priadel being discontinued, since becoming a nurse and since becoming a service user who takes lithium it has always been stressed to me how important it is to be brand specific with lithium and now this.

Medication is a fragile commodity in bipolar disorder, even small changes can cause a shift in mood and affect. I’ll be honest; I’m scared.

I am afraid of re-titration and what this may mean for me, I’m scared it may knock me sideways and I may relapse. I’m not the only one who is afraid though there are literally 1000’s of us relying on this drug like we rely on food for fuel. It is necessary and vital in keeping us well.

Our illness is so destructive, it is a hiatus in life which causes disruption and horror as standard so to remove our key to relative wellness is just cruel. I need Priadel like a turbine needs wind to function. The wind is a force which moves like Priadel is a force which saves.

I have recently relapsed into hypomania and interestingly this coincides with finding out about the discontinuation of Priadel and considering I have no other stressors in my life it seems likely in discussions that this has been a trigger in my recent period of illness. I heard about it despite the news cover of Covid which one wonders was deliberate to try and bury this news where possible? Oh how ironic that fear over this causing relapse caused relapse!

The costs of changing this medication are imports at but they are more than just financial, the human cost is imperative to understand.

The background to this is that a Swiss private equity fund have bought the company who produce Priadel, Essential Pharma, and plan to sell a new brand of lithium called Camcolit, seems legit yeah? Well if I tell you they have increased the price by 2600% Two thousand six hundred percent. Let that sink in a moment. From £3.22 a box to £87 a box for the 400mg version. This is completely unacceptable on both a human and a financial level.

Priadel accounts for 90% of all lithium prescriptions in the UK. The NHS is fragile in its current form so the complexities of changing everyone over and financial costs of around £15million will hit it like a boxer in the ring. I am a CPN and therefore work in mental health services so I foresee the problems that will be had trying to change everyone right over who is on lithium. I wonder how many will respond like me and experience break through symptoms or relapse with the fear of this change?

How is Matt Hancock and the rest of the government sitting back and allowing this to happen? I know they have Corona Virus which must of course take precedence in these strange times but this is also a big impact issue for the NHS and for so many individuals. I do wonder if this had been a physical health drug would the same be allowed to happen. Since a investigation by the Times newspaper in 2017 the government do have the right to intervene in cases such as this.

Please God let my transition go well because on a purely selfish level because it has me incredibly anxious. This past couple of weeks have been so difficult with restlessness, talkativeness, impulse control missing and a complete lack of filter but with sufficient meds being added and withdrawn its been manageable. What if those drugs weren’t available, I have a chemical imbalance based illness and yet someone is coming along and removing the chemicals I need.

I spy through my Magic Eye…

Where do I even start? I’d start at the beginning if I knew where that was but I don’t. That’s the thing with Bipolar in my experience it doesn’t have a defined start and end rather it creeps up and bites you on the arse.

I felt the teeth of Bipolar sink into my aforementioned arse last week, I waited for the bite after a friend and my hubby had asked me a couple of times was I ok. Apparently wearing Wonder Woman socks with capes coming out the back and chatting at 50 miles per hour is out of character for me. By the Thursday I couldn’t sit still, I was restless and my thoughts were racing, unless you have experienced racing thoughts you can’t comprehend how exhausting it is. Not tiring unfortunately just exhausting! Tiredness is something I have lacked this past week but that’s a whole other issue.

So Thursday I emailed my boss and went home early, I knew I needed to for my mental health and also my dignity. I don’t know about social distancing but I can tell you I wasn’t two metres away from jazz hands and bursting into songs from the musicals!!! It was time to go home, I have never done that before I have always battled through so that in itself felt like an achievement.

When I got home I started to dose up on diazepam which I know from experience just gives me a bit of relief from my own brain, it slows me down not quite to a standstill but more of a slow moving traffic jam, the trouble is it takes half hour or so to get into my system. I decided with my friend that if I was going to try and continue to work then I would continue to take diazepam but she would drive us to and from work each day, I’m really fortunate to have that option she probably doesn’t even realise how much I appreciate her giving me the option of normality.

My colleagues have mostly not noticed, which has taken a lot of effort given I’m a CPN, how I have been with the addition of the diazepam and also I’m working in an office on my own at the moment so I could close the door and be alone. Partly to be without the stimulation of others as I am very easily drawn in and over stimulated at the moment and partly because I can get up and pace when I need to move (which is a lot at the moment lol). My colleagues in all honesty are probably enjoying me riding there wave of hypomania because a way I find to keep my hands busy is baking so they have had a good supply of cake and as a CPN I can tell you how much cake is devoured in the CMHT!!!

I’ve obsessed over Magic Eye books heading back to my youth thinking asbout them and then buying them on eBay, I can’t get them out of my mind. It’s like I have no filter and have asked anyone and everyone about them and their memories of them. They can be mid sentence and I explode with verbal diarrhoea about magic eye books, I can see now whilst medicated how random that is but I still can’t help it. My brain is still hopping from one thing to the next and I can’t help that I wish I could but I can’t. I time my meds when I know I have meetings or telephone calls at work to enable me to focus better and it’s working in the main.

Even writing this I am back to thinking about my magic eye books, I’m trying to save my diazepam dose to take with my Zopiclone for bed. I’m trying to get some sleep because I know that regulating my sleep is more important than medication when it comes to getting me past this hypomanic ‘blip’. I hate using that word, I even denied this is hypomania to begin with because I didn’t have full euphoria. Surely that’s not fair if I am going to be hypomanic surely I get to enjoy it rather than feeling irritable and restless?

At the weekend I had to go with my hubby to collect our daughters bridesmaids (hmmm COVID means this was pointless) dress in a local town but while we were there my hubby joked that as we were close by he was going to drop me off at the local mental health hospital. I was talking and twitching so much I was irritating him to death, he was only joking but it made me realise that I did need help. Self medicating has its place but time was right for a greater intervention.

I emailed my CPN and asked him to ring me, reaching out does not come easily to me so this like when is took an afternoon off work was an achievement for me. I’ve played this episode very differently indeed, I have too much to lose not to. I have leaned on family and good friends, I have stopped and taken medication and not ridden the wave and I have reached out to professionals when I needed it. My CPN did ring me and he offered to ring my consultant as he was concerned about my presentation even over the telephone as my speech was so rapid.

My consultant decided to stop my antidepressant, double my antipsychotic and continue my use of diazepam and sleeping meds to try and bring me back down.

The temptation to ride the wave like a surfer is still there but like I said before I have too much to lose, I’m a mother, a wife, a friend, a nurse. So I will keep taking the pills, keep trying to get some more sleep and hopefully by next week after a fortnight of hypomania I will be feeling less restless and more normal whatever that is. I just wanted to give you an insight into what this illness means for me, Go to hell Bipolar you will not break me. I feel like I could write a book right now but I will stop there mainly because its meds time and I need to look away from the screen and get some sleep. Maybe one day I will write a book…

Chasing normality

Like anyone with a life long mental illness I crave the elusive normality that I watch other people have. I am desperate for that mood state whereby I am a good mum, wife and nurse, I chase normality like an Olympic sprinter but is it as good as I hoped for?

Short answer no. Don’t get me wrong I count my blessings for the level of normality I achieve but what people don’t see is that beyond that smile, beyond that work meeting or that facebook status is me trying so hard to stay well.

It’s easy to portray full recovery when in a well period but that is not an honest portrayal. I get up, get showered and come to work, I engage with service users and colleagues all day then head home and cook the tea. All seems normal doesn’t it. What those around me don’t see is the small things like the exhaustion leading to me struggling to get out of bed each morning, not tiredness from going to bed an hour late to see the end of a film but exhaustion caused by broken and disturbed sleep and by meds which cause tiredness too.

I’m in an office on my own so when people pop their head in they see the jovial me who likes a laugh but don’t see the physical symptoms of tiredness pushing through my veins. They see me with a pre prepared salad or weightwatchers meal at lunch time but don’t realise this is my only choice because making lunch is just extra energy I just don’t have, they also don’t see that I gained six stone in six months on one of my medications which thankfully I no longer take.

Only my family see me sit down after dinner and begin to dose before even Coronation Street starts. They don’t see me head to bed at 9pm because I HAVE to. Only my family see that if I go out and socialise then I have to have a couple of really quiet days, partly because I’m tired but sometimes because it’s been over stimulating for me. I have to manage my life with microscopic precision.

No one sees my embarrassment with my hands tremor intermittently caused by the lithium or my desperate attempts to manage the early sways in mood before they become noticeable to others or deteriorate to a point of crisis.

No one sees how hard I work to appear normal, to be the person in that work meeting or smiling on that facebook status.

I make it sound like a right moan but that’s not intended, well not totally, I’m actually really thankful that I can be ‘normal me’ whatever that might mean on any given day. I’m thankful that life isn’t all about the highs and the lows it’s about the bits in between too. It’s just hard sometimes.

Bipolar exhaustion…

Tiredness or exhaustion? Are they the same thing? Whilst taking my bipolar meds I would say exhaustion is more a appropriate description. Don’t get me wrong I’m not sedated, I have experienced this with a previous medication where I walked around in a fog (when I wasn’t dosing in the chair), when I stopped taking that medication, which also caused 6 stone in 6 months weight gain, it was like opening the curtains. The fog lifted and I assumed incorrectly that the tiredness would go too.


I yawn all of the time, like a disinterested fool, its highly embarrassing and the only thing which makes the wearing of masks a more palatable option as they hide my face and allow me to yawn away! I never used to be like this, I guess it could be down to old age (!) but I think more than likely due to medication. I take Lithium, Sertraline, Lamotrogine, Aipiprazole and Lurasidone which I know is a bit of a cocktail so it could be any one or more than one making me tired and yawning all the time


It is possible to be exhausted but not tired if that makes sense, I know that from episodes of hypomania/mania where I know deep down my body is exhausted but nothing could persuade me to sleep, even the backs of my eye lids are playing videos and even when I do sleep then its not restful yet I feel on top of the world. It’s a funny thing this Bipolar lark.


Right now I have had a lie in this morning and not really done much this afternoon yet I am yawning my head off and counting the hours in preparation for bed yet I have no ‘right’ to be tired. I have to iron my clothes for the week and prepare lunch for work as well as sort my daughters uniform for her first day back at school yet all of these ‘normal’ tasks seem beyond me right now. I have used the energy I have available to me, with self discipline I will complete these tasks but I am exhausted, I feel like I have done a night shift followed by a sleepless day and am about to face my next night shift. That’s the only way I can describe it. Generally I come in from work, cook and eat a meal then dose in the chair until bedtime. This is no life but this is my life and it’s better than it has been or would be without meds so I accept it.


Sleep is such a fine balance for me anyway, too little sleep and it’s tiggers shifts in my mood to either elation or depression, usually it becomes a pattern of no sleep and my mood becomes high but with some self management including some diazepam I can usually catch this and bring it down. Depression is less easy for me to self manage as it tends to get really far before I seek help (this is a whole other blog post). Depression zaps me of the little bit of energy I have normally and leaves me virtually bed bound.


My normal is about ensuring that I use my energy levels appropriately, its about making sure I don’t over stretch myself when I have things I HAVE to do like work and cooking healthy meals for my family. If I have a party or something on a Saturday night then I have to make sure my Sunday is completely clear as my energy levels need to rejuvenate.
I hate how exhausted I feel all of the time but that is a trade in for being well, being stable. It’s a compromise I make which allows me to nurse every day, it allows me to be a wife and a mother, it’s a compromise I am willing to take. Now that’s all for now… I’m off to bed lol

Letter to my nearly 40 year old self…

Dear you

Yes you. How are you doing? I know life has had its tough times but you have done amazingly well to keep going, to stay alive and to achieve what you have. Well done for not giving up.

Life is not linear, it has its rises and its falls and sometimes those falls are from such a height that injury occurs. You have been injured so many times if you went under an emotional x-ray machine they would declare you broken, but you heal well. Very well. You are resilient; remember that.

You have gone through significant challenges and you will do again in the future, it may leave you feeling broken again but remember the breaks you have fixed from in the past.

You have survived childhood sexual abuse, coercive control, abandonment and continue to survive mental illness which ravages your life daily. Look at that list, what would you say if someone told you that? You would say how strong they are and how much you admire their tenacity and determination, why can’t you always let yourself see that. You have nothing to be ashamed about.

You were fortunate enough to to start therapy for your childhood two days after you decided you needed it, if only the NHS could deliver the same. You cried and released that pent up emotion which was needed at that time and this saved your life. You are blessed now to not have to focus on the bad times even when unwell, they are part of your past but you can’t change them, you cant erase them, you have to live with them and acknowledge the impact they had without continuing to be harmed by those memories. Those memories add to your strength.

Mental illness is the thing which you struggle most to challenge, you engage in fighting with it whilst knowing deep down that you have no chance of living with the beast that is Bipolar without getting scars. You know deep down you have to invite him into your home and learn to live with him rather than putting all your energy into fighting him. You have to learn to accept the fluctuations in your mood, they aren’t a temporary thing they are something to embrace in their most simple form, there are things you wouldn’t have done without hypomania, you wouldn’t have ended up nursing on a refugee camp, you wouldn’t have applied to be England football manager and you wouldn’t be the creative, bubbly individual you are. You were cut down from hanging for a reason… your time on earth isn’t up yet, you have survived again. You are blessed with long periods of wellness between episodes, enjoy those years to the full.

Stop being so hard on yourself, start accepting you are who you are. Accept that the weight you put on was part of saving your life, you weren’t eating or drinking, you NEEDED treatment and weight gain was the last of the clinicians worries. It is temporary, like emotions, the weight won’t be forever.

You are so fortunate for the life you have now, the stability of a wonderful husband and delightfully amazing daughter, you have a roof over your head and a job you love (its a privilege to nurse everyday). You are financially sound and have family and friends who love you just as you are. What more is there to want from life?

I know you wanted more children and that this is what you would consider the main hurt in your life, this is what causes tears to fall when you read a pregnancy announcement on facebook. You need to leave this hurt behind and accept that it is something you can not change just like the other hurts in your life, if you can heal from the horrid things which have happened to you then you can heal from this. You are more fortunate than some, you have an amazing daughter who makes you proud every day.

Work is exhausting you at the moment and challenges which come with it make you question yourself but you ARE worthy and you are capable, don’t let anyone let you think otherwise. You are nearly 40 (about 3 weeks) and you have learned enough not to let anyone have the power to hurt you. You have spent years (pre marriage lol) going out, getting drunk and meeting guys who treated you badly, learn from that. You have the right to decide on the impact people have on you.

You have worked on yourself, increased your self esteem (sometimes too much but then they medicate you!) you have worked on your self worth, you have worked on accepting your past. You are a strong woman who knows when she needs support, you sometimes struggle to ask for it though; work on that.

Overall you have done ok with your first 40 years, you have overcome some tough stuff and are a capable woman with the ability to use that to keep moving forward in your life. You have all the components of a fantastic life, embrace them. Love yourself as much as the love you give to others and you can’t go far wrong.

Love you,

Mental Health – A weight off my mind

Mental health has a huge impact on our weight, I thought I would just share some of my thoughts around this issue…When I was first given anti psychotic medication no one mentioned the weight gain but then no one mentioned the drooling, sweating or tremors either so all is fair in love and war. I’m not saying I didn’t need this medication just that I wasn’t educated on how it was affect my life. To be fair this medication saved my life.

A dear friend said to me how great it would be if we could give an appointment to a dietician when we give out that prescription for anti psychotics and how right she is. It has been shown that anti psychotic related weight gain and obesity can lead to cardiovascular morbidity and mortality, poor concordance with medication and generally poor quality of life.
Anti psychotics can increase glucose (sugar) and lipid (fat) levels in the blood, the drugs which do this seem also to be the ones causing the worst levels of weight gain. They can also cause more general changes to metabolism meaning the way your body uses food and converts it to energy or stores it change.


In fairness I was psychotic when these medicines were prescribed so it may have been a few weeks before I was able to comprehend advice on my diet but still that information should have been there when I needed it.


The anti psychotics I have taken have left me so sedated that even the most simple tasks have seemed too much so I have remained sedentary attracting those extra inches.My weight gain is both acute and chronic in nature having gained a lot whilst very poorly and not having lost that when recovering before illness creeps up stealth like to knock me off my feet again.

Whilst depressed my levels of activity were virtually nil, I bet if you had checked out my step counter on my iwatch I would have had less than 100 steps in a day. I got out of bed when persuaded and sat in a chair, I barely even went to the loo because I barely drank. My levels of inactivity were shocking which all adds to the weight gain.
Also whilst sat in that chair I was brought food at meal times by my husband who had taken on the house husband role as well as looking after me. Now don’t get me wrong I am grateful for his efforts but his cooking is basic and not as healthy as I would make so this probably had an impact too.


Mental illness is all consuming and leaves little time, whether depressed or high (in my case, I am aware other mental illness exist) to think about other things such as watching ones weight and periods of wellness of which I am blessed with long spells leave so much to think about (See previous blog ‘The difficulty of Wellness’) that weight is never top thought. Except it is. The stigma of being over weight is just as cruel as some of that stigma attracted by some of the symptoms of serious mental illness.


I dread going to the doctors to be reminded about my weight, I imagine that is how a lot of health problems are missed in the overweight because they avoid going to the GP’s. I get that GP’s have to recommend a healthy life style but it is all relative and being mentally stable has to come first. I avoid theatre seats and other such places because of an internal panic that my backside won’t fit, self stigma is the worst of all. Don’t get me wrong I am happy to be well but a weekly slimming world class isn’t going to undo the years of harm my body has been through overnight. I want to look in a full length mirror or see a photo of myself and feel happy but what’s my options? Change meds? No chance this concoction got me and keeps me well I’m not risking that again.


Until someone comes up with a magic pill then I will go to (well zoom for now!) my weekly slimming world class and try to increase my activity whilst accepting that I am not the person I was before all of this, who ran and went to boot camp, I’m older, more tired with meds and fatter.

The difficulty of wellness…

I wanted to share something with you all; most of you know I live with Bipolar Disorder but most of you don’t know what that means for me. Even those friends who are clinicians may see the disorder without seeing what it means for me, recovery is about the everyday battle to stay well. It’s not all about episodes of relapse and recovery. Bipolar isn’t all about the highs and the lows, it’s about the bits in between, the ‘normal’ ‘well’ periods. And I’m fortunate enough to have long periods of wellness.

Both the highs and the lows are horrific in their own way but it’s the stuff no one sees that I struggle most with because at this point in my illness I have full insight. It’s the side effects of meds, I take anti psychotic’s, anti depressants and two mood stabilisers. I also take two medications for the side effects of medication.

The lithium means my hair falls out by the handful, the aripiprazole gives me hypersalivation and don’t talk to me about the weight gain from a previous medication, I look in the mirror and I am horrified at what looks back. The sleepiness is unreal, I have very little life as I fall asleep as soon as we have eaten, wake for maybe 1/2 to 1 hour before heading off to bed. I hate this life but it’s what it takes for me to work, for me to be that bubbly me you all know.

So you see in exchange for my relative wellness I have to put up with various ailments. I yawn constantly too which is embarrassing and don’t get me started on the lithium induced when I have to ‘go’ I have to ‘go’. Shame comes as standard. Another worry is the overwhelming and intense fear of relapse, if I become upset or if I laugh too hard it’s always there niggling ‘is this a relapse?’ That worry follows me around like a stalker waiting to assault me.

Sleep is vital to me staying well especially for my mood going high, whilst mania steals my sleep lack of sleep brings on hypomania.

My faith is also vital to me staying well, the pills may deal with the chemical imbalance but Jesus has everything else covered.

Parenting with mental illness is difficult, wondering constantly whether I am traumatising her the through childhood into adulthood. I can’t even have another child because of the compromise of taking all this medication, this breaks my heart and I still weep every time I see a pregnancy announcement on Facebook. This illness has stolen so much from me.

I’m fortunate enough to see a fantastic psychiatrist and CPN knowing I can rely on them both is a relief in itself, my lithium level was toxic a couple of weeks ago and they rang me back in a couple of hours. As a mental health professional myself I don’t think I had realised the influence I had on the recovery of those I work with.

I will keep taking the pills because I’m so afraid of becoming as poorly again but I do take them with a heavy heart which makes me even more cross with my diagnosis and the life I need to live to stay well. I take them at the same time each day to keep my routine, my wellness routine. Everyone sees the highs and the lows, I have no choice my illness becomes very public, but no one sees the in betweens. The difficulty of wellness. I have an illness but I am not my illness.

I just wanted to share with you that it’s not all about relapse it’s about living the best life you can because that’s what I do.

The past three years have been so difficult with two serious episodes of depression, one with psychosis, both needing ECT and one episode of mania whereby I became obsessed with the NHS trust I worked for spending too much on postage so I tried to implement new ways of working (slightly ironic now!), my episodes were very public and in hindsight very embarrassing at times. I will survive though and I will keep on surviving, I’m back to work in four days and I know this past three years will help form me into the best nurse I’m capable of being.

It’s ok not to be ok this Christmas.

I’ve seen a lot of folk on twitter sharing a tweet about ringing the Samaritans if needed this Christmas and it got me to thinking how difficult Christmas can be for those of us with mental illness. It’s a season full of sparkle and glitter, of happiness and joy; but what if you can’t manage that? Well know that it’s ok not to be ok.

Mental illness isn’t all suicide attempts and medication it’s about painting on the smile when you feel like you are dying inside and about crying alone in the loo whilst everyone laughs in the lounge.

You may feel it’s such a struggle to feign that happiness which everyone else seems to be drenched in. It’s hard to put on that smile when you don’t feel it inside, the effort it takes can be utterly exhausting. It’s important to realise though that there are no rules saying you have to paint on that smile, would your friends and family not want you to be honest and show how you are feeling? Don’t put that pressure on yourself.

Lots of triggers come with the Christmas celebrations, difficult family relationships being the main one. Again though be kind to yourself, go home early, arrange for them to have a taxi booked to get them home earlier and maybe consider not have that extra drink to cope with their company because that always ends in tears. Another trigger can be the shopping, everything from crowded stores to the expense, the greatest gift you can deliver this festive season is kindness to yourself. Shop online and only spend what you can afford without guilt. If they love you they won’t mind.

On the other side of the coin is loneliness at a time when you are forced to watch the ‘perfect family’ on tv, it’s one day and you will get through this I promise. Reach out to friends online and know that you made a difference to their day just like they are doing for you.

The ghost of Christmas past can also peep his head around the corner with memories of more difficult years, stay grounded remembering that those memories are just that and they can’t hurt you any more.

Christmas can be difficult in other ways too, not having access to your usual mental health team can be an added pressure at an already stressful time. Your psychiatrist and CPN may be on leave but there is likely the crisis team to talk to or in some areas if you go to A&E you can access psychiatric liaison nurses if you need them. Make sure you have enough meds and know how you can access help in your local area should you need it. The Samaritans number comes in at this point, they provide a listening ear and are there when you need them so even if you didn’t rate those tweets maybe still take notice of the number.

Sending so much love to you this Christmas, and here is to moving forward in 2020 away from the pain of mental illness and toward a future of happiness and stability.

Dear Bipolar

Dear Bipolar

In 2016 you brutally took my family Christmas from me and toying with me allowed me to enjoy 2017 until 2018 you savaged me again. See I had every reason to believe you would give me respite for 2019 yet I can feel you biting at my heels like a vicious dog.

This time of year has never been an issue for me prior to 2016 so it’s not like this time of year has some negative significance so why do you abuse me in this way?

You are like a thief, like the cartoon burglar with a stripy top and black hat with a bag of swag over his shoulder except this isn’t a cartoon and you are not funny. You fill your swag bag with my emotions and leave me numb, you take my restful sleep and replace it with a sense of exhaustion which I struggle to describe.

I want to make peace with you bipolar, I want to accept that we can live side by side with some mutual respect but it seems this is not what you want. So I give up, you win again. I tell you one thing though I’m not going back to where I was in 2016 and 2018 so bite at my heels all you like whilst I may feel low and without energy I will fight you I promise.

Bipolar you will always be my nemesis and I will die with you at my side but I won’t die from you. You don’t get to do that.

Your arch enemy

Claire

We wish you a Merry Christmas… as merry as you can have with chronic mental illness.

Christmas with a chronic mental illness is more complicated than it first seems. There are many things to take into consideration such as late nights and festive drinks right through to making sure you have enough meds.

Christmas is busy for most of us; a combination of works ‘do’s and family engagements on top of gift buying and making sure the Christmas house clean is done for visitors lol. Oh and if you have children add school plays, visits to Santa and choir rehearsals.

That busy time is tiring for most but can be exhausting and overwhelming for those of us living with mental illness. There is no respite, no leave like the annual leave that most of us try to take over Yule tide. Preparing for a works Christmas party involves finding an outfit which fits and given all the weight medication has put on is not an easy task, it involves planning for a night out by ensuring you have nothing else on that week and resting with a precision plan to rest again afterwards. A night out can mean meds taken at different times and possibly an alcoholic drink or two. I used to like a night in town with a few gin’s, enough to leave me merry but not falling over but alas no more. Is there anything else these bloody tablets and this illness could take from me?

The stress of trying to buy all the gifts on top of everything else is too much at times, it doesn’t seem like a lot but on these meds and the tiredness they cause, with this illness just functioning on a day to day is enough add extra onto that and it’s a recipe for disaster. Being out of routine is difficult, meds taken at different times and sleep patterns disturbed. The hardest thing of all is having to fake the emotions needed to please others and accurately reflect the season. Paint on a jolly Christmas smile and hope for the best if that’s not how you are feeling. Don’t even get me started on the stress of trying to persuade the surgery to give enough meds to see over the Christmas period ‘because they aren’t due yet’, I flipping know that Susan I’m just trying to stay sane over Christmas.

I have been stuck on a mental health ward for Christmas and whilst that is a whole other blog post needless to say it’s awful. It’s awful knowing it’s the season to be jolly but brushing your teeth or hair is an achievement. Nothing more lonely than waking up on Christmas morning on a psych ward knowing your child is at home with expectant glee for Santa.

Please don’t berate the friend who goes home early or decides not to come on the work do. Please do not mock the family member who goes to bed really early missing the family Christmas quiz, they want to stay up as much as you want them to. I want us all to have a Merry Christmas and a very Happy New Year but not at the expense of our wellness.

Pass me my invisibility cloak…

Confidence is a funny thing isn’t it, an invisible veil draping each of us. Some are able to dance the dance of many veils with their confidence whilst others dream of their confidence veil becoming an invisibility cloak.

Me? I’m somewhere in the middle. I’m an extrovert by nature but as recent job interviews have taught me recently this doesn’t translate to confidence necessarily. I’m so disappointed to have been turned down again for another job and have done a lot of reflection. It seems my nerves and lack of confidence stem from my illness. There is a little voice in my head screaming “why would they want you?” “you’re just the bird with bipolar” “why would they risk taking you”.

I hate what this illness has done to me because I would never have thought like this years ago. Maybe that was just the arrogance of youth expecting to get every job I applied for!

I get told hold your head up high, you did your best etc etc but when I’m in the midst of feeling disappointed it’s easier to listen to that internal monologue of insecurity and self worth.

I’m ready for the next step in my career but if I can’t get through the interview what hope do I have? So what do I do? I have to work on myself. I have to accept that my illness is part of me and not a part which makes anyone less likely to associate with me, whether personal or professional. Easier said than done though isn’t it?

Unbelievable

TRIGGER WARNING this blog post contains frank discussion of rape.

 

 

I just finished watching the Netflix series ‘Unbelievable’ and whilst it was a gripping drama one also has to keep in mind it is a true story and this harrowing tale is someones story, someones life.

Harrowing is definitely the word to describe this series but for me the most harrowing part wasn’t the scenes depicting the attack through flashbacks it was the scene when Marie wasn’t believed by the detectives when she was so downtrodden by their mocking that when they convinced her to retract her statement she did so without thinking of the wider repercussions. She lost all of her support networks as everyone thought she had lied. The thought she had lied because of the response of those who ought to know better when she reported the most horrific violation, rape.

Rape is, although most don’t like to think about it, a common act of violence perpetrated most often against women but can be against men too. It is a crime with an unbelievably low prosecution rate, in fact in 2018 in UK only 1.7% of reported rapes were prosecuted, we must question why. Especially bearing in mind how many assaults are never reported to police. Do scenes like the one portrayed which disturbed me so much still occur? I would hope not but maybe I am naive.

When I was abused as a child which included rape on one occasion I can honestly say in all the years since then I have never been disbelieved, whether telling family or friends or medical professionals. It isn’t something I speak of often because I don’t feel the need to, I was validated by being believed by those who love me. My perpetrator died before I felt strong enough to go to the police and I often wish I had had the opportunity. Being believed is so important but getting justice can be important too.

The most common reason for rape investigations in the UK not making it to prosecution is “Victim does not support action” (40%) which makes me question how many Marie’s are out there, survivor should never feel like they are on trial which often happens with having to hand over mobile phones etc.

In ‘unbelievable’ I wonder whether Marie may have responded differently if she had been believed by her foster mothers, if this would have outweighed being disbelieved those in authority?

I sometimes think about whether I would have been brave enough to walk through the doors of a police station and report what happened to me? I wonder whether because I was believed without question and was able to access therapy as soon as I needed it the reason I can know that it shaped who I am but it isn’t who I am, I am not defined by this.

Being believed is the start of recovering from an act of sexual violence perpetrated against you in my opinion. Various other elements such as justice and  therapy too but it doesn’t have to rule your life, you are more than that.

Being believed leads to validation which helps the healing and sometimes living your best life despite what happened is the best justice ever.

 

Back to bed

Tiredness, exhaustion, lethargy… all words to describe how I feel on a daily basis yet none accurately cover it.

My meds make me so tired it’s unreal, it’s not like a sedation which I think is different (I’m reflecting back to the dark days of quitiapine) it’s a tiredness which makes you yawn mid afternoon even after a double espresso and a handful of pro plus (disclaimer this is for illustration purposes only I don’t use pro plus lol)

It’s tiredness which allows me to function at work but fall asleep as soon as my backside hits the sofa. It’s tiredness which makes any sort of physical activity seem so out of reach.

I want to get fit. I want to go to the gym or go for long walks along the coast which is near my home but it’s just not possible. It’s not laziness I promise, I am the sort of person to grab life by the horns which is why I’m so frustrated I can’t.

It’s the penalty I must pay for staying mentally sound, stability comes with a price. I’m on a days annual leave today so I had a decent lie in and yet here I am sat outside a shopping centre in the car yawning my head off.

I’m mortified at the yawning because sometimes it raises its ugly head even when I don’t feel that tired, I hope most people would understand if they notice it but alas most probably think I am boring them.

So why am I writing this blog? Because exhaustion is ruling my life as much as this bloody illness does. Because all the other side effects combined aren’t as disruptive as this and if you’ve read my blog on side effects you will know that they are plentiful.

I’d love to hear from you if you have experience of this and have found a solution, I’m currently trying to split the dose of one of my meds on doc’s advice hoping this may make a difference but nothing yet.

All I want to do is go back to bed…

Turkish Mania

I’m writing this blog on an aeroplane on my phone. It’s a night flight returning from holiday and people are snoozing. I can’t snooze though I still have words I want, no need, to get out so I thought I’d tell you about the past couple of weeks.

It’s been a funny old holiday, a good one overall but parts were not as we expected at all. Turn the clock back to a week before we went away when we went to check in online only to find the tour operator had booked us on the wrong flight on the incorrect day. You can imagine the stress this caused and as I was named as lead passenger they wouldn’t deal with my hubby. So the four days that followed were filled with phone calls (and a few tears) I was at work but still trying to deal with this it was a nightmare. I could feel my mood going higher during this period of stress but it didn’t seem to be anything to worry about, I had a ball in my chest with a cross between excitement and anxiety and laughed a little more but I knew I was generally ok. I wasn’t sleeping yet felt great which should have been a major red flag. I saw my consultant on Thursday and we agreed I should make the sedatives I was taking regular rather than as required.

We then got to Sunday, the day we were now due to fly after the almighty mistake over the flights. Understandably I was excited, maybe slightly more than others but not excessively.

Over the next day or two my mood kept elevating, its ascent was as fast as this plane I am sat on and the roar of its engines truly astonishing. My sleep reduced to about two hours which is not my normal but I felt grand. I started to believe that I had special powers which – wait for it – enabled me to control when the lifts when to each floor and when the doors opened, my mind was racing; I started googling ‘One man band’ equipment as I felt giving up nursing to become a one woman musical phenomenon was an ideal thing for me. I had scary thoughts about running across a duel carriage way with my eyes closed ‘knowing’ that God would look out for me because I’m special. I say scary thoughts as I am a Christian and very aware of the difference between Gods will and human will.

These thoughts were spaced with a racing mind which covered most topics from fishing to politics, make up to music. I can’t even begin to explain how exhausting racing thoughts are but not in the traditional ‘tired’ sort of way, tired but wired would cover it best.

I was having five or six conversations on messenger or text at the same time with different friends and a couple of them actually contacted my hubby as they were worried about my welfare just based on the incoherence of my messages.

99% of me was enjoying riding the wave but I tiny tiny part of me knew I needed to nip this in the bud. I had no intention of sampling the Turkish Mental Health system but if I carried on it was likely I would have no say in that.

My husband and I emailed my consultant hoping for some advice and she rather amazingly within a couple of hours she replied; stop the anti depressant, increase the anti psychotic and take regular sedatives to try and slow my thinking down.

I did all that straight away and tried to relax in a low stimulus environment but every time I thought I was succeeding something would send me higher again, one evening the entertainment put the music and lights on at double speed and it felt like it matched my thoughts!

The first day I really felt the benefit was around three days after all the meds changed when we went on a boat trip, I had no excess stimulation, no phone signal, no music just me, my family and the ocean. We swam in the turquoise waters of the Aegean Sea and our biggest excitement was snorkelling to look for fish. That day made me realise that whilst meds had their place in my recovery from this little episode I had to play my part also. A couple of days on from then and I was able to rationalise the thoughts about the road and my thoughts about having special powers.

I feel embarrassed looking back at my social media presence as I was using it as another avenue to share my plentiful words, some of my posts weren’t even coherent and some were quite grandiose asking people to confirm how beautiful I am (mortified).

My jaw is still aching from clenching to to stop myself saying whatever was about to escape from my mouth without warning.

On the last couple of days of our holiday the pressure of speech had reduced and normality was beginning to return. I’m still taking large doses of sedative and I know it would take very little to tip me over into the crater that is mania again. I am annoyed with myself for allowing myself to be seduced by the first couple of days of hypomania, for allowing myself to think I could ride the wave and surf the crest of the wave that is bipolar.

I have five new bottles of perfume and a new skill of bartering as an outcome from this episode, I also have a plethora of embarrassments to deal with where I have emailed or text friends and also the social media posts with a flavour of grandiosity.

Hypomania is destructive enough at home in England but facing it full throttle in Turkey was a little frightening so I’m thankful I had enough medication with me to make the changes asked for by my Consultant. My GP rang and is sorting a new script out for my sedatives.

I know not everyone is as fortunate as me with a consultant who will advise over email and a GP who telephones Turkey to check I’m ok and advise. In the past I haven’t always been so fortunate with my care team so I absolutely know how blessed I am. Thank you to those who put up with my often incoherent messages this past couple of weeks hopefully normal service will be resumed soon. Just have to remember LOW STIMULATION lol

Parenting with Mental Illness

Parenting is hard. Parenting with mental illness can be painfully hard. Mental illness wasn’t something that just dripped into our family it poured like a waterfall with the strength enough to change the formation of the rocks below. It changed the formation of our family unit.

From the moment our daughter was born mental illness swept in with its debilitating features meaning that all my daughter knew from the very beginning was an unwell mummy. I know in my head that feeling guilty for this period in time when others have memories confirmed by photographs of a loving family are wrong but my heart says otherwise. I blink back the tears when I see ‘perfect families’ even all these years later. I know that there is no such thing as the perfect family and that everyone has issues of their own but the guilt is so strong.

I have bipolar disorder which is an episodal illness and I have been fortunate enough to have periods of wellness lasting many years between relapses. I have used those periods to ‘over parent’ to try to fill her life with happy memories because that guilt is so entrenched.

When I’m ill my daughter sees it and has to adapt to manage life with a poorly mum.

During a hospital admission she visited daily and then I will never forget her words when she asked her daddy a question then said ‘yeah like when mummy used to live with us’ that line broke my heart.

She knows instinctively when I am depressed that I can’t cope with noise and that I am tired a lot and that when I’m high she ought not to encourage me! I guess she is a child carer although that’s never been considered because my wonderful husband is there too. When I’m ill I sometimes don’t feel part of the same family they do, I feel like I’m looking in bit that there is a screen preventing me joining them.

It’s not so bad now she is in secondary school but I hated primary years, I felt so judged by other parents at the variety of christmas fayres and sports days. I felt judged by people who probably had no idea I had been ill. I felt worried that my daughter would use words such as depression and bipolar at school I wanted to be that perfect family.

I worried constantly about the stigma which comes with the fact I have mental health problems, I worried that My daughter would feel the stigma from this which would devastate me.

That waterfall of destruction which poured over my family continues to pour but the water has less power. I no longer suffer from bipolar I live with bipolar other than during relapses and my daughter follows my lead. She is 12 with a good head on her shoulders and although she doesn’t have the illness she also ‘lives with bipolar’ and that’s ok, every childhood is different and she knows she is loved.

Side effects – my experience

Everyone knows when you buy so much as paracetamol the leaflet is enough to convince you to put up with that headache when you read the side effects. So times that by ten and imagine not even touching the sides of the side effects on mental health medication.

In 2015 I ran a half marathon, was fit and healthy then… Da da dah Quitiapine hit. I gained so many stones I don’t know if the screen on my bathroom scales can fit the numbers in. Partly the actual medication and partly due to then insatiable hunger it gives you. I don’t think I can describe this hunger to explain it to someone who hasn’t taken it, I could have eaten a Sunday dinner then still been looking around for snacks within half an hour. If I went more than half an hour without feeding the Quitiapine beast I was a genuine risk to my family as I could have easily eaten their limbs! Four years later and I haven’t lost that weight which makes me miserable evertime I catch a glance at my reflection.

The side effects are all fairly extreme but we are often expected to just manage as our mental health is stable (hopefully) so ‘put up and shut up’ or even more ‘exciting’ given even more meds to fight the side effects of the other meds… Like the procyclidine I take for the extra pyramidal side effects of an anti psychotic or the Probanthine I take for the sweating caused by the SSRI. The sweating is another example of a side effect which is noticeable by everyone like the weight gain, it’s embarrassing. It’s like what I imagine menopausal hot flushes will be like but then the sweating carries on even when the heat flush has passed.

Itching is something I am fighting with currently, I am titrating up on a mood stabilizer and each rise leaves me clawing at my skin for a couple of days. My stomach is actually bruised with scratching currently, thankfully antihistamines have helped but again that is another med to combat the meds.

The next one’s are the unseen side effects of all I drool when I sleep thanks to my antipsychotic, I’m sure my husband finds that attractive!

I also have a fine tremour from lithium which is more noticeable when I haven’t drank enough. But drinking that amount of water I am never far from the toilet which can also cause problems. Oh and lithium also causes my hair to fall out by the handful alongside it being the best drug I’ve ever taken!

Last on my list, although I’m sure there are others I have simply accepted as my norm and forgotten about, is the little talked about bowel issues. Some days the diarrhea delays me getting out of the house in the mornings and wherever I go if I need to ‘go’ I NEED to go!

Now no matter how much you whistle/run the tap/cough if you need to poo in a public loo it’s embarrassing. It’s something we all do but it is something we all try to do at home in our private space.

So you see in exchange for my relative wellness I have to put up with various ailments. Some days I take my meds easily but others I find myself resenting every one I swallow. I can see without question why some people stop taking their medication, especially when their side effects are more embarrassing such as bowels or even sexual dysfunction which they may not which to talk about. If you are a clinician I implore you to take side effects seriously and even to ask about the side effects without waiting for your service user to tell you, there may be a simple solution.

I will keep taking the pills because I’m so afraid of becoming as poorly again but I do take them with a heavy heart which makes me even more cross with my diagnosis and the life I need to live to stay well.

The double helix of trauma and illness

Does trauma always lead to mental illness or does mental illness always have its origins in trauma? Just a question that I was left pondering after some discussion in the MDT this morning. Can one experience trauma and not subsequent mental illness or even more complex can one experience trauma and mental illness but they be exclusive and without link?

My personal thoughts are that trauma especially in our formative years always takes a part in shaping our personality and although I don’t believe it necessarily causes mental illness I think it can trigger it if a genetic trigger is there already.

I have bipolar disorder and I have experienced childhood trauma so I’m giving you nothing with an evidence base greater than my personal opinion and ramblings. I believe I would have become ill anyway because there is such a chemical force in my illness and medication keeps me so well. The medication debate is one for another day but I know how much it has helped me.

My experience of trauma shaped me but it did not and does not define me, I was fortunate to be able to afford private therapy within a week of realising I needed it and I wonder if this was available as standard within the NHS would there be as many people with psychological illness? This is not the place for me to start a rant about the current state of the NHS mainly because I wouldn’t stop if I started!

Do I think all mental illness has its origins in trauma? I don’t think we can say this with conviction but it is note worthy that as a mental health professional trauma is something I come across daily. That’s not to say I/we become ‘used’ to trauma because each person is an individual and treated in a trauma informed way with respect given to them and their thoughts on how best to resolve their issues.

I know how incredibly fortunate I was to be able to engage in therapy as soon as I needed it and often wonder what my life would have looked like without that? Would have become embroiled in a vicious circle of self hatred?

Trauma should be looked at as part of the whole formulation just as the person should be looked at as a whole. We can not separate trauma and illness as like a double helix of DNA they are entwined.

Bipolar in the bin.

I have an illness but I am not that illness. I have bipolar but I am not bipolar. I am defined by so much more than that, I’m a mother, a wife, a mental health nurse and those are the things that define me.

Whilst it’s not my identity it does affect it. Last time I was in hospital my now 12 year old was 5 and I will never forget how sad she looked as she left the ward each day after visiting, I will never forget the fear in her eyes when the ward became noisy if someone was distressed and goodness I will never forget her asking if I still liked a certain juice that I used to have “when I lived at her house with her and daddy”. That broke my heart, how could it not? Surely I could just forgive myself, I was ill wasn’t I? It’s not that easy though, it added to my feelings of inadequacy as a parent that I had allowed to build up after a particularly horrendous episode of postnatal depression where I pushed her away. I know now that I’m an alright parent, I get things wrong but we all do, there is no such thing as the perfect parent. Knowing I’m an alright mother doesn’t mean I don’t worry sometimes ‘will she be psychologically damaged by my illness and my hospital stays?’ Or please God no ‘have I passed on the bipolar gene?’ I wouldn’t wish this illness on my worst enemy so to pass this on to my precious daughter would be torture too great to bear.

As a nurse I think my empathy is greater as I ‘get it’ when folk say that their meds come with too many side effects or are too sedating. I get it when they say that recovery is such a long process and often one that can not be seen without the skill of time travel. I think also it makes me take on too much, too easily I shout ‘me, I’ll do it’ when a task is put to the team, I hear myself say it but it’s like someone else said it for me, I say it because I want to feel as good as everyone else. I feel like I need to accept extra to make up for the time I have been off sick. If a friend said this to me I would let them feel my wrath as I explained that they are worthy, they are enough and they should take care of their health rather than volunteering for anything and everything. See; I know the theory.

I am a nurse and a fairly decent one at that (based on what I’ve been told!) and I love being a nurse so I need to rein myself in to be able to keep nursing in the long term.

Bipolar has stolen so many things from me but I refuse to allow it to take the important stuff, my 12 year old is happy and has a good head on her shoulders and I am a good wife (he would agree after a couple of wines!!!) and a decent nurse. Those things are what define me. Diagnosis? Diagnonsence.

I hate my brain and other stories…

I don’t even know where to begin because I don’t know really what I want to say other than I want to stand on the highest building with a megaphone and scream about how I hate my brain, how I hate my diagnosis. Bipolar? I have written before about how I feel branded with the diagnosis. Most of the time though when I am stable and well between times of relapse no one would even know I have an illness. I am a nurse, a mother, a wife and I function highly (well I think I do best check with my 12 year old!). I still know though. I never forget.

I never forget because I have to consider every decision I make through bipolar tinted glasses. If I’m having a late night I have to think about regulating my sleep pattern. If I’m going out I can’t drink freely on all my meds so need to consider what alcohol I have. If I am going away for the weekend I need to take my meds with me and if I’m going away longer I need to make sure I have enough meds to take. When we wanted another baby accepting I couldn’t and stay well on medication. I could go on, it’s never ending.

Today I saw a job advertised, a job I have longed for but I am only five weeks back to work after a serious relapse so in my heart I know it’s too soon partly because it’s too soon in my recovery and partly because my team leads supported me so well that it would feel disrespectful to explore leaving so soon after returning. Knowing my deciding not to apply does not make it easier to accept, if it was six months down the line I would have jumped at the chance but I can’t apply now I just can’t.

Knowing I can’t apply makes me hate my diagnosis more, I wish I could be at peace with my label. I wish I could accept it’s part of me and embrace the ‘good’ bits the creativity and fun side of my nature but I can’t I would give them up right now in exchange for the assurance of normality every day.

Some people got a recessing hair line, some got anxiety and others got migraines… I got bipolar and despite being confident in my identity in all other areas I have no choice but I need to learn to accept it. To accept me.

A bit of an update…

So 2019 didn’t get off to the best start; I was in the midst of a deep depression which when I started to forget to drink without prompting led to a lengthy course of ECT whilst being supported well at home by the crisis team and my ever supportive husband. It’s why I was missing from all social media. Over the months which spanned not only winter but most of spring to I started to see the light as my depression lifted, I am on a significant cocktail of meds but I am well now. Well enough to return to work soon (4th June!) and everything has been just going along swimmingly. I have been filling my days by helping my 92 year old nanna because my mum who usually does fell and broke her arm so can’t drive, its been good to feel useful as there is only so many episodes of Homes under the hammer one girl can watch!

Fast forward to last week and I made a GP appointment, whilst my mental health is better than it has been in years my physical health was in a mess as I had ignored it completely for over six months. The GP was great she sorted a couple of smaller things for me and then I found the words to share with her the biggie, the one that had brought me to her surgery. “I have a breast lump” there I had said it out loud.I’d had it a couple of months but only now was I in the position to be able to deal with it. She was lovely, she asked me to remove my top and bra and then she examined me, I expected her to say I was imagining it but no she confirmed that she could feel it too and explained that she was referring me on a two week pathway to see a consultant at the hospital.

For the past week I have quietly referred to the serenity prayer ‘accept the things you can not change, change the things you can and have the wisdom to know the difference’ I have told myself every time my brain allowed me to dwell on it that I will be fine whilst never quite believing that.

My appointment came through super fast and I was seen today less than a week later. Initially I was seen by the breast surgeon/consultant who examined me and once again I expected her to tell me I had imagined it but once again she confirmed she could feel the lump so she wanted to send me for a scan. She was so lovely, really made me feel at ease, when she was taking a history she didn’t bat an eye lid when I gave her my bipolar diagnosis whereas in the past I have had some medics make some really inappropriate comments.

Through the hospital to radiology I went and they could be described as a little less person centred, they opened the door wide whilst I was lying on the bed with nothing on my top. When they did the scan they could see something which showed big and black so they popped a needle in to get a sample however when they did this it burst and she was able to drain what turned out to be a benign cyst. Praise God. Benign.

I went back to see the consultant who relayed this information to me and offered kind reassurance to my husband and I.

I felt like a weight was lifted off my shoulders whereas when I first found it during my depression I was quite ambivalent about it, please mental health professionals don’t be embarassed, ask about physical health too it could be life or death.

My hubby knows how to make me smile however he got a disposable BBQ and we ate on the beach this evening with the sand between our toes and the waves lapping on the shore. We toasted marshmallows and made a chocolate fondue for strawberries for afters and I drank cream soda. We could have eaten out but this really was fine dining and the perfect way to round off a funny old day.

On the cusp of fabulousness…

Ok so I jest when I say on the cusp of fabulous because I know only too well the devastating impact mania and hypomania can have but I mean that stage before it gets too horrid, the bit where you feel like you could take on the world and win the universe. The bit I wish I could bottle.

I am not poorly, far from it, but I am aware that a couple of warning signs are just rearing their head. Everything seems that little bit brighter and colourful, everything tastes amazing, my head is ok at times but buzzing at other times with ideas and song lyrics and jokes all on a loop. I just feel energised but I know this is something I need to put a stop to before it goes too far.

So far no one has probably noticed the changes in me, I’m not speaking any faster for instance. Subtle is not a word I would generally use to describe me but I think the changes so far are just that. I know I am different though, this morning my husband had to bring my meds to me at work as I had totally forgotten to take them which is something I have never done before I am usually obsessive over meds. I was flippant suggesting I would just skip a day but thankfully hubby brought them too me. I have too much to lose to become poorly again, deep down I know that. Two days ago I felt exhausted now that couldn’t be further from the truth despite it should be the opposite being true.

At the moment I feel great, just like an exaggerated version of me, but I know I need to give that up. We have gone from hot decking to individual desks which we are allowed to personalise… now permission to personalise when I am feeling like this may lead to some hilarious Amazon or eBay parcels! The temptation to ride the wave is phenomenal, like being hungry and someone putting your favourite meal down in front of you and saying you are only allowed to smell it no tasting. I want to taste, I want to devour the steak but I know it is bad for me. That steak will make me ill.

So my plan is extra meds and early to bed, two disturbed nights are the likely cause of this so that is their first thing I need to rectify, telling a couple of people too so that I have accountability to others if God forbid I do slip further (or rise to the stars but you know what I mean!).

World Mental Health Day 2018

Today, 10th October, is World Mental Health Day 2018, allow me to share with you what that means to me. This is nerve racking for me as this account is fairly anon, if someone googled/searched my name it wouldn’t come up but this message felt important to share. These two pictures were taken one year apart, one where I am looking my best for a party and one when I was being savagely attacked by depression. And no that description is not over the top. That time was horrendous but do you know what? The day to day is tough too. Living with bipolar disorder means I have to manage my illness on a daily basis; I need to have an alarm set to remind me to take my meds each day, it means I need to drink enough throughout the day or I develop a tremour, it means I need to think twice before I make arrangements with friends even if it’s stuff I want to do because I need to be careful not to over stimulate myself. It means I need to have my blood taken regularly so as not to develop dangerous toxicity. It means sometimes I need to leave events early if I have had a late night or a disturbed sleep the night before because sleep makes a huge difference in my wellness. It means I worry everytime I laugh too loudly or am having a bad day that people will assume I have relapsed. It means I worry that too. It means that even when well I put in an exhausting level of effort to stay that way. It is every minute of every day. It’s not all misery but it’s important I share that equally bipolar is not just happy and sad, it’s everything in between and a bit more. I have experienced psychosis with depression and that was the most terrifying time in my life so I’d just ask you to think before you use ‘psycho’ as an adjective in fact don’t use any mental illness in that way you ARE NOT ‘a bit bipolar’ or ‘totally OCD’. The most important things in my wellness are medication, sleep and most definitely the friends and family I surround myself with… To them I say thank you for accepting me as I am and not just tolerating my quirks but celebrating them!

Inpatient care – my experiences

To start with I should lay my cards on the table as to where this blog comes from; I am a mental health nurse (currently community based although I have worked on an acute ward in the past) but I have also experienced two lengthy admissions to mental health wards. My first admission was to a mother and baby unit for five months and my second was to an acute ward for four months. I have certainly seen inpatient mental health care from both sides of the coin.

When I became a nurse I did so for the same cliche reason so many others do ‘to make a difference’ except I knew what differences I wanted to make, I knew I wanted to influence care to ensure that when enduring what is often the worst time in a persons life we as professionals don’t make that harder. My experience of being a mental health inpatient was a positive one on both occasions I had overall good experiences however it was also the most deeply dehumanizing experience in my life. 

Being watched 24 hours a day is difficult beyond belief, someone watching you bathe and on the toilet, even if not on ‘obs’ you are still being observed all the time and just like I refuse to believe those on big brother who say they forget the cameras are there you don’t forget. All decisions require permission even whether you can take in some fresh air so the small things become huge, if your biggest decision in a day is whether to have jam or marmalade and then there is no jam only honey it can feel like the world might end. Seems ridiculous doesn’t it?

The noise on the wards is as deafening as the silence with other people who are unwell in their individual ways often making noise 24/7, a restful environment it is not. I wanted to disappear into silence yet the hustle and bustle of ward life punctuated the that and dragged me back into the world, into life.

On both occasions when I was admitted it was the right thing to do, I was depressed to the point of struggling to function and my cognition’s were so slow yet so very negative.  I was admitted for ECT both times and both times it saved my life but whilst the admission may have saved my life the ward left me desperate. I saw things which traumatised me, especially on the mixed sex ward for my second admission, I’m so thankful care in my area has moved to single sex for a time in life when a person is so vulnerable. 

Crisis services have kept me out of hospital on another couple of occasions when both depressed and when elated, I am so thankful for this. I had ECT whilst staying at home with family and plentiful jam and marmalade to choose from even when in a mental state which means that choice was not one I could manage.

When I first qualified as a nurse I worked on an acute ward and I was asked to present at an Mental Health Act Tribunal, I was nervous for my first time and you couldn’t make it up but the community clinician also presenting was someone who had nursed me as an inpatient and who had watched me on the loo and taking a shower!!!!! Mortified…

I am hoping to go back to an acute ward environment soon as a ward manager (cross everything/say a little prayer etc) so the full circle would have been completed, I would get to affect real change in an inpatient environment, to ensure real personal, individualised care is delivered. To ensure that no one else describes care as dehumanising because even the most invasive observations can be done with dignity and inpatient care can be hugely positive when needed.

Diagnosis or Diagnonsense?

Diagnostically defined?

No thanks. I’m so much more than that. The first thing to think about is language, I never say ‘I am bipolar’ rather I say ‘I have bipolar’ usually followed up with a rant about how much I hate this part of me. A part of me it is though, just like my size seven feet or my fine wispy hair which never looks smart.

It was depression with a side order of occasional anxiety before it was bipolar, it was even depression with psychotic symptoms for a while, if we were playing diagnosis bingo whilst I wouldn’t shout for a full house I reckon I’d get a tenner for a line!

What does it mean though? Can I not treat the symptoms without a label? I guess I could but for me naming it gives me something tangible to fight with; my arch nemesis. Me against bipolar and sometimes I have to settle for the small wins.

I can see for some people that may not be the case but I can only talk for me.

I was furious when I was given my bipolar diagnosis, mainly because I lacked insight and did not believe I was experiencing mania but partly because I had spent nearly a decade avoiding this. I knew deep down what was wrong, I’m a mental health nurse I should do, but I treated this at home when it reared its ugly head with sedatives when needed and other than once in that decade I managed to stay away from services for mania or hypomania. I did seek support when depressed but that’s ok right? Plentiful campaigns with the standard head clutched photo permitted me to seek help for that. Stigma gripped me anyway like a hug from an arm wrestling champion; I didn’t like the diagnosis depression either.

I wanted (and still want I guess) to be normal, labels are for jars not humans but at least with a name I know with whom I need to fight.

I know some people don’t believe in diagnosis at all and others would rename some labels which I wholeheartedly agree with but I can only speak for me and my experiences here, I guess this is more of a brain fart than a blog post!

When to tell people is my next worry, I’ve applied for a new job and can’t help but wonder at what point I drop this in to conversation, obviously not until successful but do I mention in person or let the occupational health report drop that little nugget into the mix? Would I worry if I had a physical health condition, I doubt it, my worry is that they would correlate my illness and my competence. At this point I’m back to ‘its just a label’ with an indignant tone! I guess a label is easier to share than a full explanation of my behaviours when poorly to a new boss (well fingers crossed!)…

The pain and joy of insight

As a nurse when writing an MSE insight is a good thing, always. As a nurse I find it odd that anyone would think insight could be a bad thing. Then I take off my starched cap and fob watch to stand there naked with just my bipolar diagnosis for cover and I hate the self imposed restrictions that insight brings.

Insight means I adjust my meds, meds which my consultant has given me a reasonable amount of control over. It means I take medication which I hate to induce sleep and stave off an episode of mood disturbance. Insight means I have an alarm on my phone to remind me to take my medication each day, I can’t afford to forget. Insight means I actually take the medication I hate with a passion because I know it’s the right thing.

Insight means I cancel plans I have had with friends, plans I have been looking forward to for a long time. It means letting people down because the stimulation will be too much. If only they know I feel more let down than they ever could.

Insight means I decide when not to drive during relapse for a variety of reasons, maybe my cognitions are so negative or maybe because I’m so distracted.

Insight means I fear showing any ‘normal’ human emotion for fear that it will leave people around me wondering if I am ill. Insight makes me obsessive over my public face and of assuring everyone of the insight I have; ironically.

My insight does go on the thankfully rare occasions I have full relapses in my mental health, my last episode of depression two years ago left me in a deep entrenched psychosis so insight was truly gone. During my last episode of mania earlier this year again my insight was gone… Unfortunately for me it went along with all my inhibition!

Insight means I try to take care of myself but to excess and often not in a way I would like to but what is my other option? Go with the flow? Enjoy the ride? Nah been there and done that and it never has a good outcome. I know insight keeps me well but sometimes I would like to be a little more spontaneous and a little less rigid.

Does anyone have an antacid? The burn of infertility

The pain is horrendous, it goes away sometimes then like acid reflux or heart burn it reappears, often with no prior warning, and burns. It burns me from the inside out.

I’ve written before about my wish for another child but I thought it would have gone away by now. If anything it is as raw and as painful as back when we were hopeful for a pregnancy, as raw as each pregnancy we lost a couple of years back.

I want to be happy when I see friends announce their big news but equally I want to scream and shout like a toddler that it’s not fair. I used to pray daily that God would give us a baby and now I pray daily that he will help me accept this pain.

I sit each evening with my medication for my mental health and with each tablet I swallow I can feel that reflux burning again. The reflux of knowing that I get to choose between staying well for the child I have or risking life threatening mental illness relapse. Some nights I swallow them quickly and other nights my thoughts are as though the Cambridge debating society have taken over my brain simply to justify why I need to take them.

I hate the jealousy and envy I feel when I see someone with a blooming tummy and an excited glint in their eye. I hate myself for not feeling happy for them.

For various reasons we can’t adopt so that option is gone too, when I realised this with finality a couple of weeks ago I felt that burn then I felt my guts being wrenched out akin to surgery without anaesthesia.

I even allow myself to indulge in a little self loathing at times when I can manage to convince myself that this lack of a baby is punishment for the fact I rejected our first born when I had severe postnatal depression. My head knows this is ridiculous but my head knowledge and heart knowledge are so far from each other with this subject.

When will the acid reflux and heart burn stop? I can’t bear this. I can’t smile and say “fine thanks how are you?” When I want to (quite irrationally) scream “NOT pregnant”.

This isn’t about my mood though, I must be clear my mood is fine this is ‘normal fertility related sadness’ if there is such a thing. Our journey has already involved two years ‘trying’ with two very early losses, getting to the top of the list at a fertility clinic and starting new mental health meds so having to revert to contraception.

I feel empty, inadequate and in pain, the burn that pains alongside the lump in my throat which holds back the tears, goodness they take huge amounts of energy.

I tell myself I’m blessed to have one child.

I tell myself we should concentrate on us as a couple and think of the life we can and do have.

I tell myself I’m being greedy.

I tell myself to concentrate on my career.

I tell myself lies in response.

The reflux burn continues and I’ve not found a remedy yet. One day.

Just a nurse

I recently went to the funeral of someone I had nursed and as I went into the church I was asked “Are you friend or family?” this was just to establish where I should sit. I heard myself reply that I was just a nurse who had cared for the deceased as I slid into the pew nearest the back. I was there to pay my respects but did not want to intrude on this intimate occasion too much.

I knew this person well, during assessment we had discussed the intricacies if their life. Mental health nursing never ceases to amaze me that we start a few minutes after meeting someone to adopt a warts and all approach to questions with an expectation that those we are chatting with will bear their soul to us. We expect a lot, I know we need this to aid formulating and plan treatment but we do expect a lot.

We sang hymns, read prayers and then it was time for the eulogy. Goodness this struck me; this person was so much more than the person I knew. So much more than the life events which had them to mental health services. I have always considered myself to be a clinician who does see the whole person, maybe because as a service user many people over the years haven’t seen me as a whole person. I felt in this moment like I barely knew the person I thought I knew inside out, it was so wonderful to hear about their life.

I wonder do those who care for me when I am service user not nurse see everything about me that makes me? What would they wish they had known if they were listening to my eulogy? I am so much more than my illness, we all are. I am a wife, a mother, a nurse, a Christian, a Sunday school teacher, a friend and I have been a million more things over the years.

This really stuck with me that despite working with someone for a long time I am and will always be just the nurse, and sometimes that is fine but sometimes knowing that little bit more could be key to working with someone on their recovery journey. I’m not even sure how yet but this experience will make me a better nurse. This is only a short blog post but I did want to share this with you because in a moment, this changed the person and the nurse I am. I am just a nurse but that’s ok.

The commute

She got in the car weary from another week at the frontline of NHS mental health care and muttered a quick prayer thankful for the strength to have made it to Friday once again. She used to refuse to say the term ‘front line’ as we weren’t at war but goodness some days this feels like war now, front line captures those clinicians wearing their NHS armour to help them protect themselves which in turn allows them to protect others.

Once in the car the radio goes on (along with the air con on full) and she tries to sing the day away, she has had some bad news today so that isn’t easy. Thoughts of each person she has met are punctuated with the drive time presenter introducing the next song or sharing a brain teaser which distracts her momentarily. What is the link between those words? Oh heck red light must stop!

Wow she is half way home, autopilot do you reckon? Her mind is going as fast as her driving; what will she cook for dinner? What’s her daughters school report like? Is it even today its due? Heck, did she write up that phone call that she fitted in earlier because she didn’t want that person to feel unsupported but simply couldn’t fit a visit in. She is bound to have written it up but wonders whether to turn the laptop on and check when she gets home? Bad idea, once it is on…

Her commute is long, up to an hour, but that time is precious. Her commute is time to process the day and plan for the next. Today she wonders what Monday will bring? Calm or chaos? She doesn’t mind really she just wants to help, she wants to support people the way they supported her when she was poorly.

Her husband rings, can she stop for veg on the way home? She quietly thinks hmmmm she could stop for wine (and veg!) so agrees readily. She looks around the supermarket and wonders if everyone else has had a commute like hers or if this is a commute special to CPN’s? Does everyone else worry on their way home about that phone call they wish they made or the conversation that didn’t feel right?

She didn’t relate to many people in that supermarket at all; nursing is an absolute privilege. And supporting people as a CPN well there isn’t a word for that.

And home, key in the front door, pick up the post (fingers crossed no speeding fine!) and the nurse is not left behind the door but certainly hung up with the coats until Monday. She is mum. She is wife. She is friend. She is Sunday school teacher. Like a stick of rock though cut her in half and it says nurse and come Monday she will hop in the car, turn on the radio and head in fresh to do it all again.

A Shocking Treatment – ECT

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I missed the @WeMHNurses chat the other evening but I thought I would share my experiences of Electro Convulsive Therapy (ECT). I don’t mind as I feel there are a lot of myths to dispel around this, in my humble opinion, amazing treatment.

Several things about ECT are controversial, one of the main things being no one is exactly sure how or why it works! It was explained to me in simplistic terms that if a computer crashed the first thing most of us would do would be to turn it off and back on, reboot it. If we think of our brain as a computer and with mental illness it ‘crashes’ then ECT reboots it. I liked that explanation, it makes it seem logical somehow. Continue reading

How are you today?

You would be bored witless if I answered honestly each time you ask. Wellness is the easy answer that everyone wants to hear “Fine thanks how are you” the British pleasantries which are acceptable greetings and part of the reason stigma still exists because generally people don’t answer “feeling a little bit poorly today but thanks for asking”. Can you imagine if society was a place where we were all honest about out well being? But then that would mean we would all have to engage in discussion about that once any differential has been disclosed. I can almost hear you screaming aaaaargh as you read this.

Folk are interested in the periods of illness whether depressed because that is worrying and risky or whether elated and manic because that’s often exciting and in my case sometimes quite fun to be around (with a side order of exasperation!). Folk are interested in your wellness, in recovery, because they care about you but also because it proves recovery is real. It is joy sharing and hope giving.

Then there is the other bit. The bit where folk expect the “fine thanks how are you answer”. Recently my answer would have been “I’m alright, not sleeping well and in constant pain with side effects of meds in addition to feeling really crap about myself due to the weight I have gained on previous meds” but I still generally go with “fine thanks”

I feel like shit. Not mood wise my mood is fine so I guess answering “fine” is a half truth. This is “normal feeling like shit but still functioning every day” which is not covered by the DSM.

Most days I want to cry at the muscle pain but GP will only give a tiny dose of meds needed to relieve this, I swear it would be easier to get crack off them yet ironically they have benzo’s on repeat! Go figure!

I climb the stairs at work partly because I need the exercise given the hideous size of me at present and partly because I am embarrassed to use the lift because people don’t see my ‘injury’ I know there is a current rhetoric not to compare mental health to a broken leg but in this case a plaster cast would be easier.

My colleagues know I am struggling with sleep, they see my exhausted face at times. That’s good though because no sleep but not exhausted well that’s another issue entirely isn’t it? I’m tearful tired now yet ironically since my meds were adjusted again I have slept the past two nights.

The daily toil of living with mental illness us exhausting, but no one sees it. They see the ‘episodes’ but not the inbetweens, sometimes I need a hand on my shoulder and told it will all be ok even on the fully functional in between bits cos no one realising makes these bits the most difficult in fact.

*Moan over; as you were*

Why I love the NHS #NHS707

I could go on and on here about the socialist ideals of the NHS and how this fits with my personal values but you all know that and chances are if you follow my blog you will have similar values. What I will share with you here is a story, my personal story of what the NHS means to me. The NHS is made up of millions of personal stories, stories played out each day. Stories which bring both laughter and tears, amazement and despair. This is just my story.

I was born in an NHS maternity hospital in 1980 and there’s are photographs to prove it, in the manner of Princess Diana and Charles stood outside cradling William even with similar haircuts and fashion choices I was introduced to the world, or to Newcastle at least. I wasn’t an easy birth apparently and needed lots of assistance, imagine if my parents had been expecting me pre NHS and had to fund all that extra support. Would I be here?

As I child I was about as clumsy as its possible to be and was always breaking bones or injuring myself in some other way. My mum was a single parent by now so money was tight, imagine if she had been forced to choose between me seeing a doctor and having X-rays against household essentials such as food or heating. The NHS was just there, always had been in my lifetime and I am guilty of taking it for granted, I think lots of us did/do though.

I was 16 when I first shared with my GP how low I felt, it was the mid 90’s and Prozac nation had arrived so I was handed my first prescription for antidepressants. I only took them for two weeks because I suddenly felt amazing which in hindsight was my first taste of hypomania. Fast forward a few years in which I learned how to manage my mood whenever it bounced which wasn’t too often so thankfully I could still study.

When I was 25 I became pregnant with our first child and wow I probably am solely responsible for the financial crisis in the NHS I used it so much! I had hyperemesis so was sick 25-30 times each day, I was in and out of hospital for fluids. Despite the horrors of how pregnancy left me my gorgeous daughter was quite comfortable and needed an NHS eviction notice (induction) to get her out. 24 hours labour and an emergency section later she was in my arms. Imagine that without the NHS? My Nanna is 91 and tells me how many births had sad outcomes before the NHS because people couldn’t afford an attended birth. When our daughter was born she was blue and needed 4 rounds of resuscitation followed by treatment in special care, again we took this for granted, its what she needed and it is what she got. As I look over the sofa at 5’3″ of lively 11 year old, good grief I am thankful. I am so thankful that in my lifetime healthcare has always been free at the point of need in this country but I am conscious of my Nanna’s memories of pre-NHS lets never go back there.

The NHS didn’t get rid of us once our daughter was born because I thin suffered with severe postnatal depression. I spent the first five weeks racing around manically then depression hit like a shovel in the face. Huge efforts by NHS staff to keep me at home but alas I needed hospital, five months later I was discharged after medication, talking therapy and ECT in a unit which cost nearly £1000 per night to look after me. This stay in hospital meant that my husband still has a wife and my daughter still has a mummy.

At age 82 my Nanna developed bowel cancer but no one said she was too old to treat, she was treated just as any other person with the disease and to the credit of the NHS doctors, nurses, OT’s, physio’s and all the other people she met she not only survived but she thrived. She is 91 and has nurses come in every couple of nights to give her fluids in her own home as her bag is over active but still runs her own home and does her own garden. I can’t imagine a Nanna less world just yet to another thanks to the NHS for keeping her going.

A few years later and I experienced another relapse in my mental health and was admitted again to hospital for four months and more ECT. The team on the ward didn’t just look after me but after my husband and daughter too, they played with her when I wasn’t able and actions like that were as important to any medication in my recovery. The true spirit of the NHS shone.

I have had further relapses of my mental health but thankfully have never been admitted again, daily visits from crisis nurses have ensured that. They even enabled me to have ECT again as an outpatient. Bipolar disorder isn’t easy to manage at all, in fact some days I wonder if I can but I can and I do with the support of the NHS mental health services I keep on keeping on.

Finally it offers me employment, the NHS not only offers employment but it offered a second chance after loosing my first career to mental health stigma. I have never felt so proud as the first day I said “Hello I am your staff nurse today”, nursing in the NHS is tough, it is under resourced and under funded but it is an absolute privilege every single day. It is a great British institution and one I for one am willing to fight for. I implore you not to believe the hateful vitriol shown on the front of some of our national press. The junior doctors are not asking too much, the nurses are not being greedy over pay, the brexit bus has not arrived with bucket loads of money. We are on our knees, tired and in need of resources but we do and will continue to hold our heads up high and uphold Bevan’s ideal for the most amazing health care system in there world. It is free at the point of delivery but it must be accessible at the point of need. Keep fighting folks, its what Bevan asked of us.

Fed up but not Depressed

I am fed up at the moment, fed up of medication that has side effects which mean I have to alter my usual routine. I am fed up of weight gained when on medication which means I am dreading our family holiday in 7 weeks which I should be excited for. I am fed up with my mindset that means I volunteer for too much because I am so afraid that people view my illness and my competence with a level of codependency meaning they see me as less able than if I didn’t have an illness; I should say I am on the waiting list for psychology to explore this issue though.

I am fed up with the small things like having to fight with my GP surgery for repeat prescriptions when they make a mistake and their response suggesting they see my mental health diagnosis and assume a co-morbid stupidity. “No I can’t wait an extra couple of days for the medication to relax my muscles I can barely walk.”

Fed up but I’m not depressed.

I want to be very clear about this as I am so afraid of expressing any sort of emotion in case those around me make assumptions of my wellness or indeed illness at any given time. I want to throw my head back and laugh until I cry tears of joy, I want to share my anger with a friend when circumstances leaving me feel cross, I want to let those around me know when I feel disenchanted with events. I want to feel normal and express normally whatever that is.

I changed my nail colour to something bright a couple of weeks ago and coupled with a colourful summer top a work friend told me, in a kind, caring way, that they were watching me in case this was a sign I was becoming poorly. I feel like I can’t do anything as I am being watched. I want to be like everyone else; I want to have good days and bad days without assumption of illness. I know this comes from kindness and I feel touched that they noticed I guess but it still makes me feel like I can’t leave my illness at the door. Ever.

Right now I am fed up, fed up too the point where if you ask me about it then I am likely to end up in tears but I am still not depressed. My muscles ache from the extra pyramidal side effects of one of my medications but the medication I have to relieve this is limited so I can only be pain free for part of the day. I want to use the gym more but some days literally climbing the stairs to my office leave me near to tears.

The weight I am carrying is like a visual representation of the traumas of this illness, each time I look in the mirror I am reminded of the very public manic episode I had earlier this year and the deep horrors of the depression which consumed me in 2016. My reflection reminds me of the ECT I had and of the psychosis I endured. It reminds me of the babies I will never hold because of the medication despite getting to the top of the list at the fertility clinic. You see overweight yet I see so much more.

I am fed up but I’m not depressed, I know this because I know depression intimately.

I have gone from medication which left me overly sedated to medication which keeps me awake for far longer than I wish, I am hoping like Goldilocks the next one may be just right. Both work well on my mental state but both in very different ways leave fed up.

I am on a waiting list for psychology to consider the idea that my competency and my illness are not interlinked following how public my most recent episode of mania was but I wonder whether this will be the safe place I need to admit, in there manner of an introduction at a recovery meeting that I am fed up?

Is it ok to be fed up when folk are watching? Can someone with Bipolar allow themselves to express any extreme of emotion without this being seen through pathological eyes?

Please don’t see my laughter or my tears through a DSM, see me.

An ode to Jeremy Hunt from a tired Mental Health Nurse….

Here’s to our nurses who go the extra mile

Who want to do more but are stopped by exhaustion

Exhaustion which roars like a fast moving train

Only slowed by a love which helps them plough through the pain.

The pain isn’t physical, sometimes it is

The pain is saying no when we want to say yes

The pain is toeing the party line when we want to express

Express that we also don’t think it fair that their wait is so long when they are ready to share.

The pain IS exhaustion itself, missing family meals from staying to listen,

We want to listen we want to hear we want to make your pain disappear.

Your pain is in your heart and in your soul deep.

We want to stand with you a comfort as you weep.

We want to wipe away your tears and tell you all will be ok

To walk with you on a recovery journey but we are stifled by fear.

Our fear is about that fast moving train, the roar of exhaustion taking the blame.

The real blame lies with those in Westminster.

Blame is easy to portion and hard to shift but those saying speak out, talk, are not delivering the gift.

The gift of funding we need to unwrap to help us to nurse with our hearts and not simply shift.

Shift the blame to exhaustion and you blame the nurse

The nurse hears the roar of the train and tries to work harder the only thing helping being their NHS armour.

When I becomes we then illness becomes wellness…

What keeps me well?

I live with a diagnosis of Bipolar Affective Disorder and over the years have had a couple of episodes of anxiety too.

The first thing I can to to be kind to myself and maintain my wellbeing is accept that I have a relapsing and remitting illness and that sometimes no matter what effort I put in I may not stay well. That’s not being pessimistic in my opinion rather it is being realistic.

There are lots of things I do to maintain my wellbeing though…

I lean on my friends and family for support, I am blessed with the most wonderful husband and daughter and knowing their love is unconditional is the best pill I have ever swallowed.

I count my blessings; an attitude of gratitude goes a long way with my health. I try to find something positive in every day even if some days that is more difficult than others.

My faith, knowing I am loved both by Jesus and by my church family is important. I’m surrounded each week by other Christians who genuinely care for my wellbeing.

My writing, whether anyone ever read my writing or not I would keep going as it’s my way of emptying my brain. As it happens I have nearly 14,000 readers of my blog so that figure along with some of the emails/comments I receive kind of proves to me that maybe I am doing some good by exposing myself in this way.

By taking time to exercise which I am doing again. As I gained 5 stone in 4 months 6 and a half stone overall on a particular medication I certainly don’t look like I exercise but I am getting back into it and it does improve how I feel.

Talk. And I don’t mean my usual brain farts but just telling those around me when I’m struggling. I’m not great at asking for help when I need it so next best thing is at least trying to be honest when people as me if I’m ok and remembering it’s ok not to be ok.

A supportive workplace who don’t just tolerate me but celebrate me and my quirks. Who helped me ease back in after depression and prevented me feeling too embarrassed after mania by normalising what had happened. I couldn’t do this without a supportive work place it’s vital for me.

Medication. I don’t want to take it. I hate taking it. I hate the side effects. I want to stamp my feet like a petulant child and refuse to take it but I know that for me personally medication works and is imperative to keeping me well.

Accepting the help that is offered. None of us are super human (although sans meds there is a chance I may think I am!) I am getting better at this but sometimes just accepting myself for who I am and with that accepting that some modifications may need to come with that just like if I had a physical illness is difficult but the benefits of my productivity are so worth it.

My advance statement. It’s a bit like a WRAP plan and mine is uber comprehensive, I have given a copy to a handful of people who would be likely to notice if I were to deteriorate. It felt deeply exposing to share this document but I HAVE to do everything I can to stay well and by sharing that I give people permission to call me out if needed.

Eat well and sleep well. I generally eat well as I enjoy cooking but sleep is currently a battle for me. I changed meds and I am barely sleeping at all, every few nights I have a better night which carries me through but I’m starting to be aware it is taking its toll so need to keep an eye on it to stay well. Oh and having very little caffeine does make a difference but still to get my head around that!

To do things I enjoy; I enjoy music although I don’t have a tuneful bone in my body, I enjoy writing, I enjoy spending time with my daughter, I enjoy visiting National Trust properties and getting back to nature. All these things help me stay well.

Saying NO! I sometimes need to say no to offers to go out and do things simply because I have had a busy week. The things I say no to may be enjoyable ones such as going out for lunch with a friend or something else just as nice but I have to keep control of my wellbeing and not overwhelm myself with plans is vital to that.

Quiet time, I try to give myself some quiet time each morning to think, pray and read my bible. My favourite few minutes of the day are when my hubby and daughter are still sleeping soundly and I have time to reflect. It’s vital to my wellbeing and I am very aware how I miss that time when I don’t get it. When I was on sedating meds I never had time in the mornings so missed this time hugely.

These are just some of the things I need to stay well… what about you? Have I missed anything? I’d love to know…

Watch out Thief about

thief

I have written before about the big things mental illness has stolen from me. I have told you before how due to stigma I lost a career I had worked hard for and was qualified to Post Graduate level for, I have told before how mental illness removed people from my life that I had previously classed as friends because they didn’t understand. I have shared many times of the months and months mental illness has stolen from me when I have been admitted to hospital and of the periods of time which are missing from my memory as ECT took them away with the depression I was so thankful to lose. The main one being that it has stolen any hope of more children for me; I am thankful for the one I am blessed to have but I because of her I can’t risk becoming that poorly again. This was the hardest theft to accept.

There are probably many more examples of the sly thief that is mental illness creeping in and stealing from me but today it was nothing major which got me thinking, no career loss, all friendships intact, it was a small thing. One of the little moments that make life worth living, a family barbecue on a rare sunny day. “It stole her barbecue” I hear you smirk?

No it didn’t actually steal my barbecue but it did steal some of the good bits that go with that sort of afternoon. Or rather not this afternoon it didn’t because I looked the thief in the eye and said no but I am paying for it now.

I changed medication a couple of weeks ago due to the previous meds leaving me so sedated I began to wonder if I actually had a life at all as I was barely functioning. I was thrilled to change meds, hopeful of my personality returning from its slumber and for the most part they are lots better comparatively speaking but I have barely slept since taking them which is getting a bit annoying now.

Back to the barbecue though I knew my medication leaflet told me I should avoid direct sunlight and avoid alcohol but surely that is just excessive? I know better than that yeah?

So I sat myself in the sunshine absorbing its rays onto my skin, allowing the vitamin D to penetrate through to my bones and poured a lovely gin and pink grapefruit (hmmmm just writing this I wonder if grapefruit is allowed too?!?!?)… bliss. We had a lovely time chatting and laughing as we shared food and drink, we whooped and shouted as my daughter as practicing her bike riding up and down the street. Just fabulous.

I was warm though, wearing jeans wasn’t ideal but I have very little to fit at the moment after weight gain from medication. I feel utterly crappy about how I look at the moment, I have never been this colossal size before, the irony being that all I want to do is hide away so no one else sees me. Best way to cool down? pour another drink of course.

So I had a couple more drinks, enjoyed the sunshine and had a great afternoon. Then I came home and fell asleep annoyingly for two and a half hours which is the longest I have slept for since changing meds two weeks ago which I bet impacts on my sleep tonight aaaargh (or maybe I just need to increase my gin intake?)

My skin is now blotchy and my stomach is not feeling so great; I have learned my lesson, avoid direct sunshine (worrying when going to Morocco in a couple of months) and avoid alcohol. So you see something else it has stolen. I am furious, furious that as if living with Bipolar disorder is not bad enough I have to live with the side effects of medication too. I want to stamp my feet like a petulant child and shout about how unfair this is. I won’t though, I will just get on with it because I don’t have a choice to do otherwise but please don’t minimize these things and tell me they aren’t the end of the world or that people go through worse. I know that and the guilt just makes this worse in fact. I am trying to validate these feelings for myself so those around me doing the same is imperative.

I have too much to lose not to manage my illness with medication but I do appreciate why so many people choose to stop taking prescribed medication because some days dependent on how I am feeling I wonder which is worse the illness or the treatment? Even right now I could cry at the pain in my calves where my muscles spasm virtually 24/7. I google whether I can manage it on exercise and a diet of Kale – I can’t so please don’t suggest this to me.

So Bipolar Disorder prepare for a ‘Home Alone’ type scenario because I am boobie trapping my life, you are not stealing more from me. I refuse to cower in the wardrobe whilst you help yourself to my life, I know I can’t get back what you have taken but I can safeguard my own future.

Sitting on the fence – working with mental illness (Day 4 of my Mental Health Awareness Week blog posts)

My first degree and my post grad are aligned to my previous career as an HR manager. I worked really hard to get to where I was in my career when the thief that is mental illness crept up and stole it all. It’s been written about in previous posts but long story short is that after serious postnatal depression which left me five months in hospital I was made redundant and at this point realised I was utterly employable. Stigma meant as soon as any prospective employer realised I had spent half of the previous year in a psychiatric hospital they would noticeably put their head to one side and tell me they’d be in touch. They never called.

Whilst still grieving for my career I decided to open a bridal boutique (in hindsight maybe my judgement was impaired 😉) but when I had a relapse we couldn’t afford staff to cover me to I lost the business too.

By this stage I was grieving a list of things mental illness has stolen from me and it now had a career, a business, a couple of ‘friends’ so it was a bit of a if you can’t beat them join them sort of thought that led me to apply for my nursing degree.

Despite having lost so much to stigma I was still determined to keep fighting it so was very honest at university when they asked why I had applied. They thanked me for sharing, they embraced my honesty. These people were my tribe.

The three years at uni were hard, financially, academically, emotionally. I only had one short ish relapse though, a short episode of mania which led to me missing an entire placement, ironically since I am a CPN now it was the community placement!

Fast forward past graduation and started working as a staff nurse on an acute ward, I loved it and the team didn’t just tolerate my quirks and ultimately my mental illness they celebrated it. They accepted me for just who I am and will likely never know how much they all healed me and helped me ‘get over’ my previous losses to stigma. Nightshift though, that impacted my mental health hugely so it was time to move on after a year and a half to a life on the road as a CPN.

About a year into my role as a CPN I had a major relapse and fell into a deep depression (see previous post) which not only kept me off work but led to me having 22 ECT. When I came back to work my confidence was knocked, I was afforded the amazing opportunity to go and work on a non clinical secondment which meant I had time to build myself back up to clinical in a timely way.

When I returned to clinical a few months later I felt nerves that I hadn’t experienced before. I tried to cover them with humour but driving into the car park took a ridiculous effort some days. I began to worry that my colleagues, many of whom I class as dear friends, associated my competence with my illness and therefore thought I ought not to be there.

I could hear myself saying “yes go on I will take someone else on” and offering to go above and beyond as a way of proving myself but this just added to my workload and therefore stress levels, despite applying many of the psychological approaches I use with service users I was still trying to prove myself.

I have never really needed validation from anyone as I felt confident in what I was doing and the work I was producing in addition to, as a Christian, knowing that validation is not needed because it comes only through Him. Yet those first few months back at work I craved it like a child being super good to attract praise. I needed to know I was doing ok and I needed to know other people thought I was doing ok, hiding this anxiety was exhausting.

I am blessed to work with some amazing people, friends as well as colleagues who again like those on the ward embrace the person I am. They have told me when they were worried about my wellbeing, in the office it’s an open dialogue. In varying degrees most mental health staff have personal experience of mental illness whether as an individual or as a support to someone else… Let’s face it no one comes into this job for the salary do they?!?!

My confidence was just beginning to improve when as luck would have it it didn’t stop improving and mania tapped me on the shoulder. This episode could be described in many ways, discreet is not a word I would use at all.

I was mortified to realise just how public this had been, how work friends had both expressed their concerns amongst themselves and to me. I had sent emails I wouldn’t usually send full of ideas and bought items I hadn’t even realised I needed. I had been speaking quickly and at times speaking nonsensical utterings. Nonsensical to everyone except me.

I can’t hide my diagnosis anymore even if I wanted to. I wear it daily, I wear it as a layer of fat from the excess weight gained from medication and I wear it in the rosy cheeks memories of that time.

And this is where I am stuck. My confidence as a nurse has never been so low. I don’t know where I fit any more. I worry that the trust I work for has invested heavily in peer support which is brilliant and works so well as a concept so “why would they want a nurse with the unpredictable diagnosis of bipolar affective disorder?”

My logical brain knows that this is not right but my emotional brain takes over at times. I’m certainly not poster girl for recovery given the relapses I have had. Who am I and how do I find my place again?

I am nauseous with fear when my lovely managers make offers such as a reduced caseload all because I worry that this sort of gesture will ‘prove’ I am incompetent.

When I returned to work I dressed for a funeral, so concerned that if I wore colour colleagues would assume this was a symptom of further relapse. Only now weeks later am I starting to wear colour again. I try not to laugh excessively in case people think mania or to display any negative emotion in case people think I’m depressed.

I find myself wondering what to do; do I stay with my lovely team where they know all about my illness but where I run an inner monologue of self depreciation or do I move to a new team where they have no knowledge of my illness and hope to feel more confident but where I don’t have my ‘tribe’ looking out for me?

Lived experience is the ‘in thing’ though isn’t it? On that basis maybe my illness is an asset to my nursing or maybe I will sit on the fence and watch. I will watch and try to fit where I got best whilst praying for me to be able to separate my competence and my illness.

Recovery -v- Mental Well being

expectations

What is Mental Health Recovery?

I can’t really answer that because it is so individual. I get cross when people use it as a buzz word “oh yes we work to the recovery model” No No No… Recovery is not a model it is a personal journey. Academics seem to have hijacked the word recovery but they do not own the term, the service user always owns that term because they own their own recovery. Actually though depending upon how you define recovery for you it can be possible but this blog post is just about my experiences.

I prefer to think about mental well being than recovery though. I have a life long condition which isn’t going away anytime soon so for me recovery is about achieving equilibrium and living well day to day, week to week.

For me recovery is about taking the medication which helps keep me well regularly, it is about not letting myself become too busy and too exhausted, it is about engaging with my care team, it is about noticing the small things and adopting an attitude of thankfulness, it is about avoiding excess stress, it is about listening to friends and family when they express concerns even if I disagree and for me personally it is about regulating my sleep pattern so for example I left ward nursing because night shift made me unwell.

It doesn’t take a huge amount to knock me sideways but it takes phenomenal amounts of effort to pull it back. Most of those I know, even loved ones would never see the energy I expel just to stay well or even just to appear well on a day to day basis.

Am I well today? I’m ok ish I guess. On a scale of 0 -10 where 0 is the most depressed I have ever been and 10 is the most manic I have ever been I am probably 6, maybe 6.5. Now this is where it gets complicated not 6.5 in that I feel amazing, although I do feel pretty good but 6.5 because I have the muscle twitches, fidgeting and speedy thinking which are all indicative of me not being fully myself. I know why though and that is half of the battle; I am in the process of changing medication and this has impacted my sleep which has in turn like mental health domino’s kept knocking down the next thing. I’m not worried about it, I have some short term medication which is helping me in the short term until my body gets used to the changes. You can read about the side effects in last nights blog post on medication.

Does this mean relapse though? Not as far as I am concerned it is part of my day to day mental well being. I lost so many years and hindered my own recovery by seeking out a return to the person I was prior to illness instead of embracing the life I was and am able to have.

I hope one day to feel able to embrace my illness, to fully accept that the experiences with it enhance the person I am, but like I said at the start of this post recovery is a journey of mental well being and I have my boots laced up ready to crack on with the journey and as long as I keep taking my meds and listen to my body.

Shake me and I Rattle – The Pros and Cons of Mental Health Medication. (Mental Health Awareness Week – Day 2)

I was sixteen the first time a GP handed me a prescription for antidepressants and sent me on my less than merry way.  It was the mid 90’s, it was Prozac nation and these magic pills were going to make me feel better. There was no questioning that I remember from the GP about my mood, no referral on to anyone who may have been able to teach me techniques to help me manage. I had a fair bit going on at that time, due to familial disharmony I was living away from the family home but I plodded on. I didn’t understand how medication worked and so when I didn’t feel great after a couple of days I stopped taking them, I think I had anticipated them working like paracetamol for a headache; instant cure.

Speaking with people who were around me back then it seems I had a lengthy period of unmedicated depression, we joked and called it my hermit phase because I didn’t leave the house.

Over the next decade I had a couple of periods of depression whereby my GP would prescribe an SSRI and after a few weeks I would feel fantastic so I would stop taking them and enjoy life for a bit, in hindsight periods of hypomania. I was the life and soul of the party and self medicated in the extreme. None of the antidepressants I was given had horrendous side effects that I can remember but I never took them long enough to experience this to be fair

When I was 25 I got married and we had our daughter soon after which is when I started with other medications which I had not taken before. The first five weeks after she was born I raced around manically for five weeks, I decorated every room, spent a fortune and even threw a dinner party each night for three weeks until I sank into the deepest of depressions. This was my first contact with secondary mental health services.

The depression was debilitating after the recent energised weeks so my husband and I sought help. I was prescribed an SSRI to little effect and my thoughts became darker and darker, to a place where ending my own life went from a terrifying prospect to my ‘only option’. Fast forward to a hospital admission and I was prescribed V20140227-231508.jpgenlafaxine which alongside ECT ensured my daughter still had a mum to grow up with. This wonder drug really helped my depression however there is as always the ying and the yang… my clothes all had to be black because the excessive sweating was horrendous. I was given medication for the sweating which helped but that made my mouth dry which meant I drank loads which meant in turn I had to pee loads but I couldn’t really ask for meds to combat the side effects from the meds I took to combat the side effects now could I?!?!?!

After a period of wellness it as time to come off the Venlafaxine… Oh. My. Word. It took me 10 months to withdraw from this wonder drug which had saved my life. I felt physically ill with sweats, shakes, nausea, head zaps and eye/balance issues. I was still thankful for the life it had given me back but goodness those 10 months were hard.

I have tried other drugs over the years to treat different symptoms, one particularly sticks in my mind that was for anxiety but left me feeling like I had insects crawling all over me. I have never been a fan of any medication which would sedate or slow me down hence never being a fan of benzo’s however I grew to know over the years when to use some diazapam when my thoughts would begin to speed up, I self managed through a combination of this and non-meds techniques. It was really flipping hard work but diazapam in that sense preserved my dignity and kept me going providing I was strict with myself. It was suggested I consider lithium at this point. No chance I wasn’t taking that I knew about the side effects.

During my last episode of severe depression I was prescribed an SSRI and an antipsychotic in addition to lithium and alongside ECT. I was too unwell to consent ether way re the lithium but wow it has been wonderful, life changing. Yes it is a bit of a pain having blood tests etc but it just takes away the need for me to ‘put the effort in’, I felt so relaxed in my mood.

The antipsychotic I was prescribed was given to me partly because my depression had left me in the frightening depths of psychosis but also as a mood stabilizer. The sedation caused by this drug was so intense I was desperate to stop it as soon as possible which with agreement I did and stayed on the SSRI and lithium. Aside from the sedation the main side effect I experienced was weight gain; I gained five stone in four months which I am still carrying and I hate it. I can’t bear my reflection. I can’t bear trying on clothes. I feel hidious, ironic really that medication to treat how I feel made me feel so bad.  All was good for a while with no significant side effects… I was living the psych meds dream!!!

Then the SSRI, along with some stressful situations found that the lithium was no longer enough to hold them in check and mania didn’t just creep up on my it jumped out the cupboard and shouted ta da with added jazz hands. The SSRI was swiftly stopped and a combination of antipsychotics, large doses of benzo’s, sleeping tablets and of course still the lithium. The pills did their job and the mania subsided but the sedation from the antipsychotic felt like it was ruling my life. I had bruises on the tops of both arms whereby my co-ordination was impaired through sedation that I kept missing the gap when walking through door frames. I went back to work and was literally putting every ounce of energy into functioning 9-5 Monday to Friday, outside of that I did nothing. My hubby did the cooking/cleaning/washing/ironing, I was useless and determined to get the consultant to stop it. She agreed to swap it for another antipsychotic which also acts as a mood stabilizer as a second to the lithium but is far less sedating so last week the I started the swap.

Aaaaaaargh I didn’t sleep properly for nights last week and don’t get me started on the nausea. My brain is still going fifty to the dozen but the nausea/sickness is subsiding. To have energy again is amazing. There is no way I could have considered blogging each day during Mental Health Awareness Week whilst still on the last meds. I feel a little shaky and tremulous but that seems a small price to pay for stability. There is a sense of relief that despite the cocktail of side effects I still experience my illness is being treated and therefore hopefully the big episodes can be avoided.

So you see shake me and I will rattle but it is about finding a treatment regime where the benefits outweigh the risk of not taking them and for me personally I have too much to lose by not taking them. It does give me a great insight I feel into why so many service users I come across at work choose to stop their medication ‘not concordance’ (or non compliance for those stuck in a Quantum Leap scenario in 1984) as it tends to be noted. The side effects are often an illness in themselves, mental health meds may be marvelous for treating mental illness but they make people fat, sometimes give diabetes, give anxiety at times, leave people nauseous and I’m not even going there with the bowel issues. I hope this insight into meds has given you food for thought especially if you are a prescriber.

Put on your own life jacket first… (Mental Health Awareness week – Day 1)

Over the years much of the management style in the NHS has had its origins in the aviation industry; from dynamic risk management to ‘the human factor’ lots of what we do can trace its ancestors back to the aviation industry. That is no bad thing, they have provided some great starting points for NHS leadership over the years but there is one I think we miss. For me this one is the most important.

“Please put on your own life jacket first before stopping to help others”

During Mental Health Awareness week one of the clear focus’ is stress and I can’t emphasise enough the currency of this issue. Resources are so stretched that we find ourselves managing risk more than distress on a daily basis and when fire fighting so often the raised cortisol levels leave those on the front line feeling anxious about what they perceive ‘their failings’ as a clinician. I used to refuse to use the line ‘front line’ nursing as we are not at war but that feels like an accurate description these days if I am honest.

I became a nurse because having been severely unwell with my own mental health and having received a mixed bag of care, some amazing but some quite frankly shocking. I wanted to help others in a holistic way, I wanted to walk side by side with people as they worked toward recovery, whatever that may be for them. Maybe I was idealistic? I even did my nursing dissertation on the changing role of the nurse as we move toward wholly co-produced mental health care. That shouldn’t be idealistic.

Getting to finish a day, even just once in a while knowing that we have made a positive difference, that shouldn’t be idealistic either. Tough days will always exist but should not be the norm. It scares me how many hugely experienced clinicians are due to retire in the next couple of years so without a major injection of cash things are only going to get worse not better.

Today we had a team stress risk assessment review and I won’t go into details because that is a local issue for my team but I was struck by how tired my colleagues and I are and how photo’s were popping up all day of people holding up pictures about managing stress for Mental Health Awareness week but that unless the staff put on their life jackets first and consider their own mental well being or we won’t be able to support others.

When I nursed on the refugee camp a couple of years ago it tested me to my absolute limits clinically, I was exhausted from long hours and I was working with deficits in resources even bigger than the NHS (I know right!) but stress didn’t hit us because we knew we were making a positive difference. I wonder what we could learn from that? Staff I work with are incredibly resourceful and supportive of each other and I wonder whether for a short time whether it is worth taking the emphasis away from the negatives and trial looking at ‘in an ideal world’ what would staff change at little or no cost… Kind of Solution Focused Brief Therapy for a team if you will?

So just a short blog but I hope you agree an important issue to start Mental Health Awareness Week so whether orange is your colour or not get your flipping life jacket on to enable you to keep helping others.

#MentalHealthAwarenessWeek #Stress #AreYouCoping

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Formulating formulation

As a CPN I am frequently reminded that we provide episodic care, that those on my caseload should be recovered to the point of no longer requiring secondary care within a desired number of sessions. Now that is a lot of pressure on both me and the service user, with an overwhelming feeling of failure when we don’t manage that. I sometimes think we have gone beyond austerity and that this is me simply applying a dressing on the wound until the person is re-referred back in to the team. I don’t want that, I don’t think any nurse wants that, we want to walk side by side along a journey of recovery then wave the person we have nursed off into their future stronger than ever.

We CPN’s all work in different ways but I think despite knowing the time pressures it is impossible for me to walk into a persons home and say ‘Hi my name is xxxxx and could you please start engaging in this treatment plan I think is right for you’, the person and I need to build a therapeutic relationship. Maybe one or two sessions whereby we get to know each other a bit, where I tell them their dog is cute and ask them about the pictures on the fireplace, if we share a love of reading I may recommend a novel to them. I need to put them at ease, they need to be able to trust me if I want them to feel comfortable to off load their deepest and often darkest thoughts.

So the first session or two are ‘get to know you/build a therapeutic relationship’ type sessions and during the time over these couple of sessions I would try to build up a picture of risk and document this on the FACE risk which is the tool my trust uses, I’d get them to complete a consent to share document so we both know and understand where the restrictions lie. Get the basics done from a documentation point of view.

Next thing I probably ought to document is care plans but I am of the mindset that we can’t produce a care plan until we have a decent formulation. How can we decide a plan of treatment if we aren’t even 100% sure where the main issues are?

I use the 5P’s formulation which includes considering:

  1. Presenting problem(s)
  2. Predisposing factors which made the individual vulnerable to the problem
  3. Precipitating factors which triggered the problem
  4. Perpectuating factors such as mechanisms which keep a problem going or unintended consequences of an attempt to cope with the problem
  5. Protective factors

It is important for the person to know that what is important to them is important to me. As you may have noticed if you read my last blog was that I plan on having a few sessions of talking therapy myself to consider my current all encompassing worry that my work place and colleagues will connect my illness and my competence. As I plan on only having a couple of sessions to talk it through I thought it would save time if I arrived with my formulation already done… so because I am living the rock n roll life I thought I would make a start on it tonight. A Saturday night on formulation.

Whilst sat wondering if there was anything else to add to my precipitating factors list I began to realise that maybe I am more than a list (who knew?!?!?). We are all more than a list. Now I am not saying here that the 5P’s formulation is not a great tool because it is a fab way to capture what is sometimes a difficult narrative to grasp in the minimal time we as clinicians have. I always do the 5P’s formulation with the person but attempting to produce my own made me acutely aware that maybe I need to consider how I capture this vital background in a less formal and more human. I was reminded also this evening how emotional it can be to see all of this written down in black and white, reminded not to underestimate that because these formulation sessions are not ‘therapy’ as such they can still be difficult for the person I am working with and depending upon their level of distress and how much they are able to tolerate may take more than one session to complete.

It is not until now that we can even begin to produce care plans. Again this is something I do with the person I am nursing, in a session. it makes sense to co-produce them, why would someone be invested in care done to them rather than care done with them?

So now if we consider that on average with a caseload of 35 people are seen 3 weekly and taking just the above into account at roughly five sessions, which in itself is conservative as some people may take much longer to engage then this is around 15 weeks, add a couple of extra weeks for annual lave of the CPN and without any other hiatus this is four months before any actual therapeutic intervention takes place. Those four months will hopefully have helped to build trust and to have aided the person to have hope once more.  They certainly aren’t wasted weeks but they don’t fit neatly with the episodic care model as comfortably as most trusts would like. Whilst I absolutely agree that the days of the Community Mental Health Team CMHT are over and the new player is the Community Treatment Team CTT and this is a good thing however (you didn’t think you would get away from me without a however did you?) for some people the rational unbiased support and the sharing of hope that comes with that is vital and is treatment in itself. Lets never minimise the role of hand holding, sometimes we all need our hand held to get us through.

Too often we declare people as ‘treatment resistant’ when actually maybe we just need to rethink the treatment we offer rather than absolve ourselves of guilt by referring to our episodic model of care. Illness is not always neatly episodic. People are not episodic. If we explore the formulation with a solution focused approach then this in itself could be the most appropriate treatment going. I will never rush a formulation, strange that it took producing my own in a bid to save time to realise that.

That sounds like fun. Mania.

But mania, that’s brilliant isn’t it? That’s the fun part. The compensation for the horrific, crippling lows of bipolar disorder. Let me set that particular record straight; this episode has not been fun.

Getting there ‘the ascentthat felt fun and coming back down ‘the descent’ well that journey was pretty fun in parts too. The middle bit though, not fun at all. I felt afraid, terrified even and at that point I was no where near even having to face the embarrassment and destruction I had caused.

I do remember feeling afraid of my own brain, it was almost like I had several brains and each of them was stuck on a speed I could no longer keep up with like a dysfunctional record player with the vinyl record being unsure if or when it will ever stop.

Just a week prior to this my brain going faster held a mild irritation that everyone and everything seemed to be going particularly slowly. This was hideous but manageable, if it had stayed here I may have just embraced my productivity levels but it didn’t. The ascent had barely begun.

At its height though I could hear my myself talking and I was aware that this inconsistent monologue was coming from my mouth however I had no more knowledge than anyone else in the room as to what I would say next as I hadn’t processed it.

Just a week before this conversely everything made total sense and I mean everything. The words that rolled off my tongue and the tongues of others were connected, not everyone understood the connections but this simply confirmed what I was already beginning to realise that I was a superior being destined for great things. I could hear the poetry.

I wonder, in hind sight, if it was this ridiculously inflated sense of self that led me to start writing a sitcom (based in an office of CPN’s) then being certain, I can’t say pretty sure because I was certain that it would be such a hit so much so that I actually penned my resignation and put it on my bosses desk. Maybe?

I heard myself swear at people in a seemingly deliberate, verbally abusive way, which is so far from my norm that this added to my being afraid of myself. What was I going to do next?

This time it had gone beyond baking cakes at 3am, it had gone beyond deciding to decorate and starting to impulsively strip wallpaper at 11pm when I ought to be heading to bed, it had even gone beyond the time that I was unable to decide which bunch of flowers to buy in Sainsbury’s so I bought them all. These things made me slightly unpopular in my marriage but they weren’t the end of the world.

I have nearly always been able to pull it back before, I have too much to lose not to and I am rather cross with myself that I didn’t spot this in time. Accepting that this wasn’t my fault may take some time. Self compassion and time.

When I feel my thoughts getting faster and my senses becoming enhanced I know it is time for extreme self care. I cancel everything in my diary, even the good stuff like meeting friends or going to the theatre and take medication that I keep in the house to make me sleep and sleep I do. No TV, no music with lyrics, nothing, I create a beige mundane world where my brain has the opportunity to rest. To fulfil its obligation to rest.

A few years ago the last time I had one of the occasions when I missed the opportunity to get a handle on my ever elevating mood which my husband was putting up with as patiently as ever even when I struggled to decide between all the wonderfully colourful and beautiful flowers in Sainsbury’s so I bought them all, my dear husband embraces my eccentricities, he always has so the line between that and illness is sometimes blurred. I was probably just getting to the stage whereby I needed an intervention when I had a nasty accident and hurt my back, I was put on opiate based painkillers and huge doses of diazapam for my back pain and the combination of those two forced my body to sleep and therefore resolved over time my high mood.

Once many years ago and long before I gained enough knowledge and insight into my patterns very nearly ended up married to someone I had only known for a couple of weeks, we were turned away from the registry office for being intoxicated (big phew!). The ‘episode’ seemed to last for months but I felt great, it never ended up like this. I rode the wave and enjoyed every minute. I was young and had nothing to lose, people saw me as the life and soul of the party. They probably thought I was on drugs to keep going but I wasn’t. I even have a couple of tattoo’s from periods of elation… hidden ones mind!

The temptation to ‘ride the wave’ is more than just temptation it is a powerful force, this offer of bubbling excitement and an overwhelming feeling of happiness. What’s not to love? Who wouldn’t want to feel like that?

To medicate and try to rest my brain with sleep and low stimulation is not easy, it goes against everything I am feeling in that moment.

The ascent is seductive.

Inevitably what goes up must come down and with a little encouragement (read medication!) from the crisis team my descent started.

A few people had tried to tell me they thought I was poorly the previous week and I thought they were ridiculous, I kept telling them “I feel great, I’m not depressed” they agreed with me that I absolutely wasn’t depressed but I didn’t understand or want to understand what they meant. I felt great how could I be poorly? Insight was slowly seeping away…

By the weekend my dear friend and my husband decided it was time to ring the Crisis team. Even the ascent was gaining speed now so by the Monday when I was assessed I was irritable and agitated, as much with how I was feeling as with the Crisis clinicians who were there to assess me. I wondered why on Earth they could not see that I just needed a couple of good nights sleep?

I agreed to the Crisis team giving me some medication and coming to see me at home partly to get rid of them, it’s pointless arguing; experience has taught me that any disagreement as a patient in mental health services becomes a symptom of something (a whole other blog for a whole other day!). And partly because I was becoming increasingly afraid of where my own thoughts were going to lead me next.

The Crisis team were great, once they realised I was being concordant with medication they gave me control of how often I saw them (as little as possible!). After a few nights where I slept a bit better and took significant doses of sedating medication during the day which barely touched me we moved on in that after a few decent hours of medication induced sleep I felt rested, energised in my brain but my body felt rested and this was apparent with my thoughts being a bit slower and my speech certainly being slower and more comprehensible. I was still flirting from subject to subject and folk were still talking in rhymes here there and everywhere but it was slightly slower which was a relief.

As the day went on and I became more stimulated by the world around me the speed went up a gear but this lessened as the days and weeks went on.

Eventually I began to feel ‘normal’ whatever that is, but normal for me however was still aware how this could alter rapidly with my environment as I was still very vulnerable to elation. I think that’s gone now although maybe don’t ask me about the pay deal 😉

I hate the medication I am on. Last time I took it I gained five stone in four months which I am still carrying and which upsets me greatly. But it works. Laughably after recent weeks I am now complaining to my hubby I feel so tired all of the time because of the meds!

Then came the apologies. The red cheeked conversations were I have expressed my regret over things I have said and done recently, I feel so mortified over some things. The late night texts ‘because I had a brilliant idea’ to the knowledge I have sworn at people and shouted in church and that’s only the tip of the iceberg called mania that I was climbing. When I reflect I can see how close to the top of the hypomania scale I came and how easily it would have been to leap over that hurdle into full mania.

I knew what was coming the day the psychiatrist mentioned hypomania and bipolar, it’s a conversation I have avoided for just over a decade which was my first ever contact with mental health services after I had our daughter. I even tried making up a diagnostic term and telling the Dr I simple have a Hyperthymic Personality Structure… which I still think is a great diagnosis and it should be included in DSM 6!

I am ashamed of the self stigma I have shown since being branded with this diagnosis. I say branded because I feel like it has been written on my forehead with hot irons, for all to see and me to feel.

I lost so much to stigma when I was diagnosed with severe depression and hospitalised after I had my daughter. I lost my career which laughably was in HR and employment law and I lost some friends who just ‘didn’t get it’. I can not lose anything else to stigma, I just can’t.

Even last year it was suggested to me that maybe someone with a history of mental illness should consider a less stressful job than nursing. Stigma ladies and gentlemen is still alive and well. I am a good nurse, a competent nurse. When I am well I like to think I make a difference, I am a good nurse because of my lived experience not in-spite of it.

This recent episode has knocked my confidence which I was only just regaining after the last episode of depression I experienced. I am wearing greys and blacks as I am afraid if I wear colour people will assume I am ill, I am leaving the room when something funny is said to ‘go to the printer’ because if I laugh they may think I am hypomanic again or if I don’t laugh people might assume I have crashed into a deep depression.

Rock. Hard place. Yeah that’s me stuck in the middle.

I am so worried that colleagues will relate my illness and my competence, it’s matterless how many people try to reassure me that is the internal monologue I am running at present, I’m hoping a couple of sessions of talking therapy may help me work through that.

Mental Illness has taken so much from me but I refuse to be subservient. I am wearing my armour which consists of family, friends, Jesus and medication and then I am ready to fight, or I will be, just not yet. First I need to heal.

Depression is like needing your ears syringed – A reflection on my experiences.

Depression is a word we hear a great deal these days, which in some respects is great as mental health has held its stigma like a shield to keep us from the rest of society for too long. In other ways however it has become over used for example “I’ve got to work this weekend I’m so depressed” which over time minimises and on occasions ridicules what can be a disabling and debilitating illness which sadly sometimes proves fatal. It is that narrow view of depression which leaves so many sufferers delaying seeking help as they don’t want to be seen as weak, I’m a mental health nurse and fear of that view from those around me certainly influenced me seeking support and I ought to know better.
Here I shall outline my personal experience of depression, this isn’t from a textbook and it isn’t from my work as a mental health nurse this is my experience. My life.

Depression is more than sadness and tears.

It is a brain so slow that a simple ‘yes’ or ‘no’ response feels more pressured than a post graduate dissertation deadline even when the person waiting for the answer is a patient loved one who repeats the question until you can process with a kind smile on their face.

It is eating tins of sweetcorn or tubs of glace cherries as decisions over food mean making a sandwich becomes simply too challenging and that is without the lack of motivation which becomes all encompassing.

It is having thoughts which are so far removed from your usual belief system yet being really angry when the lovely nurse suggested they were symptoms of psychosis in your care plan. I’m a nurse, I’d know obviously.

It is legs so hairy that never mind the worry over being detained under the Mental Health Act the worry should in fact be being taken by the local zoo or animal park.

It is, in the early stages, when motivation is beginning to dwindle but some ability to process thoughts still exists putting sugar in coffee to save the energy of making a meal.

It is staying for the whole day in pyjamas as no motivation to wash or dress and further through the recovery process still staying in pyjamas as now no clothes in the wardrobe fit due to a combination or medication, inactivity and the kindness of friends bringing treats.

It is seeing that ‘light at the end of the tunnel’ that folk talk about but then looking in the mirror and seeing the physical damage this mental illness has done to your body; googling teeth whitening as you think it may be weeks since you last brushed them.

It is starting medication which makes your mouth really dry so drinking more and therefore in turn never being able to be far from a toilet.

It is your feet seemingly growing but when the light of recovery begins to shine realising it is simply your toe nails having grown so long that they are on the verge of needing minor surgery rather than a pedicure.

It is having to sell items of sentimental value as your period of full salary from work runs out whilst reminding yourself that health and family are what is important not jewellery.

It is, whilst in the depths of despair, seeing messages with scrabble tile fridge magnets written by your hubby to try and encourage you to wash or even brush your hair then a friend having to spend hours brushing the tangles through when you don’t manage that.

It is a head which is itchy and hair which looks wet as it is so unclean.

It is skin peeling off as you are so dehydrated due to forgetting to drink.

It is not realising you are even cold until your husband comes home and wraps a blanket around you and puts the fire on as you are a pretty shade of blue but are still sat in the same position he left you in earlier.

It is not remembering Christmas Day due to ECT treatments and knowing you can’t get those memories back.

It is finding the jar of coffee in the fridge.

It is four inch roots and natural nails when you are usually known for beautiful nail designs.

It is family and friends arranging a rota to be with you after treatments to enable you to stay at home and to be in touch throughout the day to prompt drinking and visits to the toilet.

Its questioning your faith even though in hindsight that same faith is exactly what brought you through when you felt like giving up.

It is putting every ounce of hope in each person I see taking me in their arms and holding me to put my brokenness back together. It never worked for more than one magical second but still craving it with each person I saw and I am the sort of person who hates feeling or appearing to feel needy when well.

It is being told that this new medication which is working well and has you believing in the future again means that despite reaching the top of the list at the fertility clinic you should give up on your hope for another baby.

It is watching the same programme again and not even realising until your husband points this out.

It is wanting to be able to read again as recovery progresses but still not being able to do this with a concentration of no more than 140 characters. Thank you twitter for reintroducing me to the real world.

It is being exhausted and tried of living but equally being terrified of dying.

It is having to exfoliate your entire body once feeling better and watching several layers of skin come away as it is months since you have showered properly, you have stood under the water because hubby told you to but not had the energy to wash.

It is over a year later still having to set a reminder on your phone for taking your medication each evening because you owe it to everyone including yourself to do everything possible to stay well.

It is having tremulous hands because the previous day at work you were so busy you forgot to drink enough and the wonder drug that is lithium also kicks in with its side effects.

It is feeling like you have to prove yourself a little bit more than your colleagues to show how well you are.

It is feeling heartbroken at the reminder when you see three magpies that to have a fighting chance of staying mentally well that nursery rhyme will never fulfill itself.

It is remembering to take days just to be still and remembering that life is not an emergency.

It is being kind to yourself about being a mental health nurse who became so poorly and remembering that an RMN who has ECT is no different to a midwife who gives birth.

For me the decent into the depths of depression and the climb out of this vast quarry is like needing an ear syringe, its gradual; you know you are not right but have no idea how deaf you have become until your ears are syringed. Recovery is as terrifying as the illness for me as looking back it took me months to accept just how ill I had been. I am blessed with a tremendous circle of friends and family around me and a faith which means I believe that God never wastes a hurt and that I will be able to use my experiences to the benefit of others in the years to come.
The examples above aren’t in any sort of order, certainly not chronological, some were early in my period of illness, some were in the depths and some were as I was moving on in my recovery. Some I remember and some I have been told by friends and family as I have a period of time missing from my memory whether from the depression or from the ECT, either way I am stood stronger than ever and so glad every day to be alive.

Writing for Well Being

I was afforded the opportunity to attend a ‘Writing for Well Being’ workshop on Saturday and although I have blogged for years now which I do credit with being a prophylaxis in my own sense of well being but this workshop encouraged me to re-examine my sense of perspective. I LOVED this workshop, such a different way of writing for me.
We were encouraged to write with specific prompts given but then the freedom to let words flow as they entered our brains and exited via our pens.

The first task we were given was to think about a word we like, a favourite word maybe. I chose pomegranate, I just like the way it sounds.

We then had some discussion which led to a three minute task of starting with the words “In the garden…” this is what I penned:

In the garden there are flowers and grass and a slide for all of the children. This is my dream, I wish I had a garden. We are fortunate in so many ways but we don’t have a garden, or ‘outdoor space’ as all these property porn type tv shows refer to it these days.
I would like a garden filled with children but I know I am blessed with the one child I have. Some people will never know the joy of hearing a child shout ‘watch me mum’ on a slide at the park so why should I lust after a garden and more children?

The next task was to use the favourite word of the person to our right, and we passed our word on. The word I was given was ‘Blackbird’, so I had to use this word to inspire me to write for three minutes:

Listen to the blackbird singing. Its tune sings summer over and over. Its real; summer is here and my eyes know that as they are blinded by the bright daffodil yellow of the sun. The sun is just rising up from spring and venturing into summer. The blackbird wants to make sure everyone knows that by singing its song. It wants you to know summer brings hope, the cold of winter is past and summer brings more than the blackbirds song.

Again we had some fab discussion about where the prompt had taken us although thankfully we were never asked to read aloud what we have written. Our next task was a little longer, five minutes I think and our prompt was to start with ‘I feel happy when…’

I feel happy when I hear my daughter laugh. Not just a quiet smile but a raucous giggle. I feel happy when my husband and I get time just to be. We don’t have a lot of money at the moment but I feel happy when this makes me realise money doesn’t buy happiness. It does pay the mortgage however and knowing that is paid makes me happy too!
I feel happy when I am reminded how loved I am and when I am held in strong arms. I feel happy when I am well. Not every day because life is not linear it has ups and downs but when I stop to appreciate what I have. I am happy but happiness can be elusive.

The next task I found very difficult. I had to imagine I was an object in a room and write as that object about an emotion I was experiencing. Write from the view point of an inanimate object? What the heck?

I can’t say I picked because it was more like my pen picked as the thoughts flowed through the ink of my biro and I found myself writing from the point of view of a clock hanging on my living room wall:

I am ticking. Tick tock tick tock tick tock. She keeps looking over, I think she thinks I am getting louder. I think I am all she can hear. She has zoned out, she looks like she stopped listening as the nurse described how poorly she had found her upon first assessing her. Tick tock tick tock tick tock.I can see her almost processing her memories, trying desperately to put them in some sort of order. I have watched her for years hung on this wall but never seen her as distant or vacant as she has been in recent weeks. She usually runs the household looking at me but now she doesn’t even shower.
Tick tock tick tock tick tock… She can’t look at me and shout ‘come on we are late’ because she no longer goes anywhere.
The nurses visit and they glance over at me too. They see her desperation and try, try so hard to give her hope but they hear my call also, tick tock tick tock. She understands though, she is a nurse too.
As the weeks go by the nurses get to know her. She is more able to talk freely and without the delay which cursed her for weeks. One day she laughs and it drowned out my voice tick tock tick tock. I wish I could tell her not to count the minutes but to count the moments.
Moments are priceless and it is moments which give happiness which is what she craves. It is that we all crave. Tick tock tick tock tick…

The next task was to imagine we were a detective walking into our own homes and making a judgement about the person who lives there. I was to write from the perspective of this detective:

This person has so much to remember, no wonder they have a white board on the back of the front door. Nurse appointments, Doctor appointments, occupational health appointments and reminders about non-uniform days and money needing to be paid for school trip, Guides trip and Sunday School trip. I move through to the living room to see photos of a happy family, the mother looks so different to the tired looking woman who let me in.
I see a bible and a Christian book beside the fire. A tired woman but a woman with faith and therefore hope lives here. I see a basket of paste eggs on the side board, all brightly coloured. Maybe the mum did these with the daughter? Maybe she is feeling a little better?
I see a pile of paperwork next to a laptop; I am well and it looks overwhelming to me so how must this mother feel looking at this?
Cards on the fireplace suggest she is loved by many and that her colleagues hope she will be back at work soon, coupled with the letter half written on the open laptop which would suggest she wants to return too.
I thought the woman had gone out but wandering through this home I hear her breathing heavily and realise she is asleep.

The final task we did was a reflective piece of writing based upon a graded visualisation the leader of the workshop read out to us:

I found this more difficult than I imagined I would. I dislike sitting with my eyes closed in a room full of people. I don’t feel comfortable with that, I don’t know why. My discomfort with this took me a little by surprise. My dislike of this task overtook my thoughts and I missed the first part of the graded visualisation task. When I re-engaged with the teachers voice I heard her describe walking through a rocky cave or cavern and my mind wandered. I found myself thinking about the 1980’s film ‘The Goonies’ and about the characters walking through the underground cave and caverns. I was waiting to hear the teacher describe an opening leading to an amazing aqua blue lagoon with a traditional wooden pirate type ship. I desperately tried to bring my mind back but I was lost in this happy memory of a thirty odd year old film. Maybe I shall try to watch it with my daughter this Easter holidays?
I heard the teacher say that through the next cave was an opening with light pouring in and a luscious green hill in front of me. I was back engaging with the exercise. The green hill was so vibrant against the pale blue with only a scattering of bright whilte clouds of the sky. I could smell the grass, not the urban smell of grass recently cut but a natural smell of grass which has grown there for centuries and which is home to all manner of creatures. Lots of creatures including the ladybird I just saw, it had four spots and was the brightest scarlet red I have ever seen. The ladybird spread its wings and flew away; maybe it didn’t like being looked at?
I was stood still breathing in deep lungfuls of country air and feeling quite blessed by the absolute glory of God’s creation when I heard the teacher remind us this was an exercise and bring us back in the room.

It was time to go home.

I have never done anything like this before so these short writing tasks were a totally new experience for me. Whether it is any good or not I shall leave to the readers but I did enjoy it and I shall absolutely book on another workshop of writing for well being, it really got my brain ticking over in a way it haven’t for so many months whilst I’ve been ill.
Anyway I have typed this as it was hand written quickly in 3 minute bursts so feel free to ask if anything doesn’t make sense.

I really recommend the Writing for Wellbeing workshops Laura does… check out her website: 

http://www.writingforwellbeing.co.uk/