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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