A sense of relief, rebound stress and balloons

In May I had to have a Work Capability Assessment (WCA) to see if I was still eligible to remain in the Support Group of Employment Support Allowance (ESA).

I was one of the last people to be moved across to ESA and filling in the WCA form 2.5 years ago was an stressful experience.

I have a severe form of Bipolar Disorder and my doctor often refers to my fragility and lack of stability. He does this when I go for my appointments so we both know exactly how I am. I visit him at least once every three weeks and at one point I was there every day so he could keep me alive.

I finally got a letter saying I was being put straight into the Support Group without having a face to face assessment. This rarely happens and I was relieved to say the list.

This year I had to be reassessed and, no matter how much I told myself that I’d get the same result again, I was still terrified in case I was put into the Work Related Group even though my illness had deteriorated.

On both occasions my doctor has written letters of support and written starkly of how I would be unlikely to survive being forced back into work. In short he was saying I’d kill myself because I wouldn’t be able to cope.

I’m not dreading the next assessment quite so much because it’s highly unlikely I won’t get the result I need but I am hoping it’s at least 2.5 years ago.

I cried a lot the day I got the letter and I cried even more the next day. On the third day I was hit by rebound stress. All the feeling and crappy feelings that I’d been holding on to for a couple of months sprung back on me and hit me squarely in the face. I had a very miserable few days and yes, more tears but now there is a sense of calm. I don’t wake up every morning wondering if this will be the day I get the judgement that may not go my way.

This week has been the Balloon Fiesta and it’s been a lovely weekend. The only thing that mars it is the two firework displays they have. My dog is terrified of loud noises and he barks until they stop and needs a great deal of comfort but we get there.

The balloons were fantastic as usual and I’ve taken hundreds of photos yet again. It’s surprising how many photos turn out looking exactly the same when it comes to balloons – or maybe it isn’t.

Anyway, this past week has been stressful and I’ve had to try very hard to get through it but that’s the thing, if I keep trying I eventually get there.

I’m going to talk, are you listening?

A few weeks ago I got a letter through the door telling me I was due for an ESA reassessment. Part of me dreaded looking at the form and so I didn’t for a few days and allowed myself to feel panicked and because I allowed that feeling it passed. When I looked at it I was reminded that it was actually far simpler form than I remembered it to be. Don’t get me wrong, it’s a difficult form to fill in because you have to spill your guts out on to the pages but the form, to me at least, is simple. Or maybe that’s because way back in the day when I worked for DHSS you needed a degree just to open the envelope let alone fill it in.

I talked to my doctor about the supporting letter that I’d need and gave him photocopies of the pages of the form that I’d filled in. (I’ve now posted it and as I write this I’m panicking in case I’ve missed something important out – like my name and address and yes, I have just checked my copy to make sure that I have put it on there.) I digress.

I read the supporting letter that my GP wrote for me this morning before I had it copied and it had me in tears from the the first few lines. I choose the words I used to describe the effects that bipolar disorder has upon me and my life but I cannot choose the words that my GP chooses and it’s those that bring the stark reality of my illness and life into far too a sharp focus.

“She is significantly disabled by her condition.”

“When I first knew her she was particularly unstable, and I had real worries that she would commit suicide…with extremely vivid suicidal fantasies and a degree of derealisation and impulsivity.”

“She experiences very marked irritability that she manages by avoiding interaction with others unless it is very carefully planned and time limited.”

“She is certainly very intelligent, resourceful and insightful however, she copes only by carefully controlling the scope of her life and by reducing as far as she can activities that could result in loss of choice or control.”

“I continue to see her once or twice a month as she always teeters on the edge of instability. Her regular contact with the surgery has been helpful but it does also demonstrate how fragile she is.”

“She only just manages to cope with the necessary activities of daily living.”

“I would strongly recommend that she is not pushed in the direction of work, and that she is allowed to maintain the freedom necessary to make the hour by hour choices that enable her to cope with what is a very unpredictable and exhausting illness.”

Forms are simple, letters are easy to write but coping with the way it spells out your painful life letter isn’t.

So let’s stop with the Time to Change, Time to Talk, Heads Together fuckwitted mentality and really learn what life is really like for those who cope with the kind of shit that I live with every single bloody day.  Instead of harping on about how you’d like to help ask somebody to show you what they have put on the form to prove that they’re in the grip of a mental illness that they can’t escape from. Perhaps then things may change, people may really talk and, miracle of miracles, they may even begin to listen.

Stop the world, I want to get off

I’m waiting to see a psychiatrist again. My GP requested a referral and we’re both hoping I’ll get to see my last consultant mainly because he’s amazing at his job but also because I saw him for about 10 years and we developed a mutual language so it would be easy to talk to him. I can go in and tell him I feel well fucked up and he’ll know what I mean. Priceless.

I’m ultradian cycling (though at this point it’s only one change every 12 hours or so) and this started on Thursday. It was odds on it was going to start – EU Referendum, opportunity to write about it for a website and staying up all night to listen to the results – it was never going to end well. Politics leave a lot of people cold but I love it. I’m not eloquent about the subject but I know what I believe in and that passion, like all the others that inflame me, burn me out with mania and turn me into ashes with depression.

I’m fed up with the in-house mud slinging of those within the Labour Party re Jeremy Corbyn. He was voted leader by people who know that, despite the leadership and Tory Lites of recent years, the Party was born in red brick houses and not red brick universities. If he is deposed then the Labour Party membership will drop overnight.

I’m not at all surprised at the antics of the Conservative Party (has anybody found George Osbourne in their shed yet?) and the desperate please of the Liberal Democrats is rather sad but have any of the shit stirrers thought about what this is doing to me and all the other vulnerable people who have elected them, voted in the referendum and left feeling scared at the uncertain future that has been created?

I’m in that tiny section of people who are considered so ill I was put in the support section of ESA for life (without a face to face assessment) because the risk of me committing suicide if I was forced back to work is too high for them to take the chance. This means that my income is guaranteed but I am not invulnerable to rising prices, higher utility bills and I cannot tell myself to worry about life in the UK because it is something to worry about.

Anyway I’ve been so manic that I can’t get the words in my sentences in the right order and today I’ve dipped into depression and couldn’t care less if my words are in the right order or not. I’ve decided to focus instead on a day out in London I’m having on Thursday and if I burn out then so be it.

Meanwhile the country is being fucked roughly by the people we have trusted it to. Bastards.

I’m still a sick pigeon…

I’m halfway through the process of becoming free of medication specifically to treat manic depression/bipolar disorder and it’s interesting to say the least.

After 20+ of instability and medication regimes so overwhelming (33 pills a day at one point) and distressing I decided this year to try to stop taking medication. I will still take medication periodically specifically to treat anxiety as it can fuel mania and also pills for insomnia as that drives me to hallucinations at times but none specifically to treat bipolar disorder.

I went through a Work Capability Assessment (WCA) this year and, without a face to face assessment, was put into the support group for Employment Support Allowance (ESA). This now gives me the time and energy that I’ve wasted fretting about what would happen if I had to fight my corner to work on self-management of bipolar disorder. I have, for the first time in my life, time I can devote to me and me alone.

Part of this time and energy is spent baking which is both therapeutic and money saving. It doesn’t always get done as, well managed or not, bipolar disorder will always steal far more of my life than I am willing for it to take. I can sit around in my pyjamas and edit photos all day if I want (or need) to and I can sleep without waking up in a panicky state just in case I’m told I’m well enough to return to work.

I’m doing well so far but recently I’ve been rapid cycling and I was worried that it was the result of reducing the medication I take. I’d been through nightmares as a symptom of the withdrawal, deep exhaustion as my brain freed itself from the drug and I was more than a little worried that those experiences would all be for nothing. Becoming medication free is the holy grail and I am close to touching it so I knew I had to talk to my GP about it and take note of what he said even if it was an instruction to increase the dosage of the drug I was trying to give up.

A long talk with him yesterday has put my mind at ease and all is back on track. The rapid cycling isn’t considered out of my normal range. I’m still able to assess my behaviour and respond accordingly and I’m aware of what is right and what is wrong. My big warning sign is irritability and it can often be out of control but I am able to rein it in at least a little so on I go.

I am not cured and I still live with the effects of a deeply destructive illness. I may become medication free but I cannot reasonably expect that to continue for my lifetime. I have time, energy and space to self-manage but I am still a very sick pigeon and there is no cure but I’m going to be a sick pigeon without medication and that makes me smile.

Leaving the medication behind…

A few years ago I was so seriously disorientated by my mental health problems I was forgetting to top up my electricity and gas meters, forgetting to cook food that I’d bought and was deteriorating rapidly. There wasn’t an obvious reason for this decline, it’s just the way it is sometimes when you have serious mental health issues. I rang my two closest friends and we agreed that the way forward was Lasting Power of Attorney (LPA) and, as one of them is an independent financial adviser, my finances and my handling of them improved no end.

Last year I decided that the way forward for me was to stop seeing my doctor quite so often and this followed on quite naturally from my self-discharge from my consultant psychiatrist. Both doctors have been fabulous and neither of them fit into the imagined boxes that people shove them into. They’ve both convinced me over the years that just because I’ve been diagnosed with bipolar disorder it doesn’t mean that I have to behave in the stereotypical ways and this is because neither of them fit the stereotypes of their jobs.

Last year I went through the Work Capability Assessment (WCA) for Employment and Support Allowance (ESA) and I was lucky enough to be judged to be put straight into the support group for life without having to have a face to face assessment. This means that not only is it accepted that the way I am is as good as it gets it also means that one enlightened person in the system realised that it would do more harm than good in dragging me in for assessment. I think the fact that I am at risk of suicide if I’m forced back into work helps.

Also last year I successfully stopped taking lithium after 20 years. I had been diagnosed with an underactive thyroid and lithium will only make things worse, I hadn’t been anywhere near compliant with doses for a long time so my GP and I decided that the time was right for me to stop taking it. All’s well that ends well.

I have no major money problems any more, I have a good relationship with my GP and I’m no longer in such dire need that I have to see a consultant psychiatrist anymore and as a result I have the time and space I need to have to manage myself and my illness. I can rest when I need to, I can divert my manic energy into doing positive things and know that when I crash I can take the time I need to isolate myself and recover as much as possible. I have become stable within an instability – far from stable but much better at managing it.

So this week I’m sitting down with my GP to talk about stopping taking the last remaining medication for stabilising my moods. It’s a drug used for managing epilepsy (believed to be on the same spectrum as bipolar disorder but a variable distance apart) and so it’s not quite the gamble it was when I stopped taking lithium. I will agree to start taking it again if the gamble doesn’t pay off but I’m very hopeful that it will.

I am never going to be well but I am managing well. I’m sat writing this at my dining table (two large cats have taken over the bureau so no chance of using that) swigging from a “sharing” bottle of diet coke and eating cheese & biscuits. I’m almost dressed but not quite (jeans yet to go on) and my teeth need brushing but I’m doing something that is useful for me.

My “recovery” will never become meaningful remission but that’s ok because I’m now at a point where I know how to cope and I know that it’s more than ok in the times that I can’t cope.

And that’s the point – we eventually get to the point where we can stand up on our spindly little bambi legs and walk. I’m walking.

 

On being outwardly competent…

I finished filling in the WCA form earlier this week and had only to sign it once I’d picked the supporting letter from my GP up from his surgery. I’m proud of the way I handled the form filling process. It was stressful, depressing and anxiety inducing but I did it in my own time and at my own pace. It was harder because it proved impossible to get help from an “expert” or charity to do it. Mental health charities couldn’t (or wouldn’t) help, CAB has a turn up and see policy which is destructive for those with mental health problems and the only other people who may, and I stress the word may, have helped were two bus rides away in each direction. So that left me in a position where, had I not already suffered at the hands of the discriminators, I certainly would be feeling that I had now.

The opening paragraph of the letter that my GP wrote spoke of the me 12 years ago. I lived in a world where I planned suicide to the point I had different plans for different seasons. I would not contemplate using a method in the winter if I had deemed it a way to die in the summer and vice versa. I was reminded of how I’d talked about this to my GP and rationalised how one method was a “good one for cold weather” because there would be momentary heat of a kind in the final moments. I have struggled long and hard to leave that part of my life behind but, if I’m totally honest, suicidal thoughts are always a little too close for comfort.

It was hard reading the line that the stability of my moods is as good as it’s going to get. The disruptive and multiple daily cycles are never going to ease. I will wake in the night as I move from depressed to manic for the rest of my life. I will never know how it feels to wake in the morning and have stability through an entire day. Even at my most stable I have never had a day where I didn’t experience at least one change of mood.

It hurts that I am described as being easily stressed, not because I am inadequate but because I am easily overwhelmed. It’s a way of saying that I’m not built for life and that life is certainly not built for me. On the outside I look like any other person but on the inside I’m unimaginable to most people and this is what frightens people so much about poor mental health. It is unimaginable, unfathomable and terrifying. Try living with it and see how scary that lack of understanding really makes it.

He writes that my current state of “relative stability” would be a nightmare for most people but for me it’s a significant achievement. That makes me so sad and I’m in tears just thinking about it. I work so hard to get within the normal range of moods and never get there. I have never had those normal range of moods having experienced my first depressive episode aged 11 and developing diagnosable Bipolar Disorder by the time I was 16. My normality is a huge struggle.

If you’re expecting a line here to say I carry on with my life, my interests and hobbies in spite of Bipolar Disorder then you’re wrong. It is pointless trying to live to spite something or someone as all it does is open a gateway to resentment. Resentment is pointless: everybody recognises what is going on but, like peeing down your leg, you’re the only one that feels it and you’re the one that has to clear up the mess.

What I do is live. I do it as well as I can which is actually quite a low level but I’m happy most of the time. I write, I take photos, I have a small menagerie of animals and all this gives me a structure to my day which is really good for me. I don’t have a “purpose” in my life to pursue because it’s a full time job just being me getting through the days and get through them I do.

I was advised to approach the WCA form carefully and to remind myself that I was talking about my worst times and not my best times. The fact is that I can have my best times and my worst times in the same day. There is little difference and it stings that I can’t describe that with any fluency to anybody. It’s truly a foreign experience.

What has come out of the form filling experience for me is that people mean well but they often miss. They think they understand but if I don’t how can they? I have an incredible GP who has been so patient and considerate with me at times when I would have slapped me. I have a small but wonderful circle of friends who just love me and would even if I wasn’t a basket case.

It’s been difficult seeing where I was, where I am now and knowing that I could find my way back there quickly. Life is uncertain at the moment but I’m doing what I can to make the road a little more walkable and, as my Health & Welfare and Finance LPAs are registered then I know that if I can’t make major decisions should my mind really mess up then someone else is willing to do that for me.

I’m not brave really but I don’t know how not to fight and that is my salvation.

I’m feeling abandoned…

The advice for everybody when it comes to filling in the ESA form is to get expert help. This morning I rang the experts to be told that they don’t/won’t/can’t help. So I have to ask myself what are the mental health charities for if they don’t help you fight the things that could kill you? One local branch of a national network has “adjusted” research figures to get the stats they want, had a “manager” who stole from clients when he wasn’t making sexually suggestive comments to them and, as I’ve found out today, doesn’t help people in need. Why are they getting funding exactly?

If there was ever a day I felt the lowest of the low then today is it. Kicked in the teeth whilst lying in the gutter.

The next step…

The ESA form arrived late last week. I had one of those psychic moments and when I heard the letter box rattle I knew that this was it. I’m wasn’t sure at the time if I was calm about, numb or immersed in planning for some mental health training I was delivering that morning but I out put the envelope to one side unopened and continued with the pressing needs of the day.

I opened the form when I got home. You can only deal with fear if you face it and a quick look at it confirmed that it wasn’t designed for people with mental health problems and I needed to talk to my LPA guys and my GP first. They were supportive and with lots of practical advice: take it slowly, take lots of breaks, drink lots of tea, cuddle the cats. My GP has pledged a letter of supportive evidence from the outset as he believes that I’m unemployable.

Today I start to make the notes that will become my evidence for the form. I’m going to have to confront some big truths about myself and for me that’s the hardest part. It’s not so much about what I have become but about the disinhibition that Bipolar Disorder displays about me. It is exaggerated but it is still a me I don’t care for and neither does anybody else.

So, support team in place, tea bags a plenty and cats close by today is the day I start to do this. If you think of me today please think more kindly of me than I will end up doing of myself.