Well hello depression

I have always been on the depressive side of manic depressive and even during the times when I rapid cycle so many times a day that I lose count there was always the certainty that when the cycling stopped that I would stop in depression and not mania.

Depression, while a disgusting and debilitating experience, has always been familiar to me. I never recognise the onset of it but once I do I know how to handle it. I have a check list of things to do until I see my GP. I see my GP at least once every three weeks so I never have long to wait. People often envy my frequent visits to the GP but try being so ill that they’re seeing you often to keep you alive – it’s nothing to envy.

For the past two years or so I have been hypomanic. Hypomania is mania without psychosis. I have never had a full blown pyschotic episode but I have had episodes that are so close that I’ve felt the cold breath of psychosis on the back of my neck.

I hate being  manic. The management of my illness is centred around being in control. I can’t control depression but I can manage it if I’m prepared to lose sleep and look like a mess.

Over the past week or so I’ve seen my sleeping pattern change. It is a paradox that when I am manic I sleep soundly and when I’m depressed I get insomnia in a big way.

I have felt lethargic over the past few days. There have been bursts of  energy and enjoyment but today I just want to curl up into a ball and live in the airing cupboard for a few years. I sent a message to my best friend last night saying that I couldn’t find any positive things about the day, that I wanted to get monstrously drunk (I’ve been in recovery for 26 years) and that the safest thing I could do was to go to bed.

This morning I sent him a message saying that it had dawned upon me that I was actually was depressed. It had taken me two days to get to that point but I got there in the end.

Depression is a violent drag away from all that is enjoyable and worth living for but the feeling is much better than the relentless optimism (and the lack of empathy that came along with it) for the past two years.

If I spend the next few days, or weeks, or months crying and feeling like nothing counts anymore I’ll be happy in a weird kind of way but anything is better that the relentless mania and all the chaos and indignity that comes with it.

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.

Equality and the doctor’s receptionist

This isn’t a terribly coherent post, I just really need to rant or else I’d be tempted to lamp somebody.

I’m a bit angry and I’ve really, really, really bit my tongue hard during a phone conversation I had about half an hour ago.

I have this pain in my left breast and it’s not in one particular part so for a couple of weeks I’ve been thinking nothing of it but it won’t go away and it doesn’t feel muscular so I rang my GP’s surgery to get an appointment.

It’s constantly drummed into us by health professionals that it’s important to get bumps, lumps and twinges checked out when they’re in your breasts (and testicles for men of course) and so that’s why I was ringing.

My GP is on holiday and he’s not back until the day I go away so there’s no way he could ring me back and give me some reassurance or let me pop over and get checked out.

I have two choices it seems – I either ring up at 8.30 tomorrow and see if I win the appointment lottery or I talk to the on call doctor today and be treated like an emergency. I can’t ring up tomorrow because my memory is shot to pieces and if I’m out with the dog I have nothing to make a note on and will have no idea of what time I’m supposed to be there if I’m lucky enough to get an appointment. If.

I asked for a note to be put on my doctor’s screen so when he gets back he can see it because I’m going to have to talk to him about it as, since he’s my key doctor, he looks after the whole of me not just the mental health bit.

This confused the receptionist big time because she wasn’t convinced that she could leave a note for my doctor and ask an on call doctor to ring me. I persuaded her that since the system for appointments etc. was inadequate and that I don’t fit into the options open to me then I needed my GP to get the message and, whether this pain is an emergency or not, I need to talk to somebody about it.

Then the defensive language came – you know the stuff. “I’m just doing my job.” “I can’t change the rules.” “I’m treating everybody equally.”

I wanted to scream at her. The system doesn’t treat everybody equally – it doesn’t leave room for people like me who have complex problems and live alone but it will give priority to physically disabled people but if the disability isn’t obvious then we’re expected to sit in the corner and play with the crayons.

I asked her to feed back that the system is inflexible and inadequate and that I’m sure I’m not the only person that feels that way. Surprise, surprise – I’m not the only one. Will she feed it back? No, because that would be mean going to someone she feels is powerful (and therefore gets to hide behind their power) and acknowledging that an imperfect and inadequate system may seem to promote equality but it actually discriminates.

There is a glass ceiling when it comes to disability and those of us with mental health problems or invisible and/or undiagnosed (I’m trying to handle the news that there may be something wrong with my brain too) hit that ceiling quite early on. It’s as if we’ve brought it on ourselves and that any anger we feel is either a result of our mental health or ingratitude when really it’s more about a desire not to be treated like a pile of shit.

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.

The deterioration of self…

I feel as though I’m disappearing quickly and all that is left to see and feel is mania (though one day I’m sure that mania will be replaced by depression). It’s quite a dramatic thing to think and say but it is by no means the statement of a drama queen.

Last week I went away off to London/Kent for a few days with my wonderful dog who came to live with me as a rescue last year. About 6 weeks after he arrived I made a similar journey with him and he coped admirably but last week was totally different. His first visit was made whilst he was still timid and not sure of who I was or that this was his new life and last week he was brimming with confidence, playfulness and a need to demonstrate that I was his mum. It was exhausting.

On the way back home we got to Paddington station early so he could calm down and sit in the waiting room peacefully instead of the hour in Hyde Park that I’d planned. It would have been fun but he’d have been so hyped up it would have been nearly impossible for him to sit still on the train. While we were waiting for our train the sad news filtered through that there had been a death on the tracks just outside of Reading and that meant changes to the journey. We got on an earlier train and that meant a 40 minute journey at the other end by bus before a 20 minute walk home – small changes compared to somebody losing their life but the impact on me was bigger than I expected.

I found myself sat on the train crying which, being in a chronic period of mania, is unheard of these days. I felt confused and unable to cope with getting off the train, walking 100 yards and getting on the rail replacement bus. It felt as though I was facing an arduous journey. Luckily I was able to talk to the train manager and show him my railcard that states I’m disabled and he made sure I got to my bus safely.

Almost a week later I’m still exhausted. After talking to my GP this morning it’s obvious that my ability to cope with small changes has disappeared; I can no longer cope with small changes in my routine. Five years ago I’d wake up really early and go off out for day to who knows where and not think about the impact on myself – I could cope with change. Even without a dog in tow I couldn’t do that now.

I had forgotten that I had an appointment with my doctor today until I got a text reminding me. It has thrown out my plans for the day because it was a small change. It has shifted my day by about 45 minutes but my brain tells me that I can’t have the day I’d planned because the timing has changed. I get a physical feeling on one side of my head as I try to reason with myself that I can still do the things that I’d planned but it doesn’t work.

It’s acknowledged that this isn’t me, this is bipolar disorder – I want to do the things that the illness is telling me that I can’t. A friend reminded me this morning that we all have limitations and that we can’t always do the things we want or need to because we can’t get our head round them and that’s true, I’m not special or unique in that way. I struggle a little more perhaps because the illness gets in the way. It’s hard going from being a spontaneous and chaotic person to somebody who is no less chaotic but is less able to embrace it.

People often say that it’s the little things that count and in my case it’s the little things that count against me.