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.

The kitchen, stress, dog, stress, cats, stress

I think it’s fair to say that, reading from the title of this particular blog post, you can guess I’ve had a stressful day.

The old kitchen got stripped out this morning and it’s going to take about two weeks to become the new one. The council have a contractor to do them and each step has to be done in turn before the next team can come in and do their bit.

My kitchen was supposed to be ripped out yesterday but, as I was in London yesterday, they had to delay it a day. This meant that the plumber coming this morning to fit a temporary sink unit had to do it this afternoon.

Today has been very cold and so I couldn’t take Ogden out for the whole time that they were working (about 4 hours in total) so there’s been a lot of barking and whining and begging me to stop the noise.

The contractor claims that they can’t say when the team will be coming round only whether or not there will be some activity in the kitchen that day and where on the list I’ll be. They can’t give me a time because they don’t know how long previous jobs will take. They can’t tell me what time it won’t be before (that should be an easy one) so that I can go out and get some fresh air or some shopping so that when they do arrive I can concentrate on getting Ogden into a stress free atmosphere. Of course not because THAT WOULD BE HELPFUL.

They’re gone until Monday and then it’s asbestos day which means we really are better off out of the flat so I’m hoping it’s not going to rain.

On Tuesday Ogden is having his toe amputated so you can guarantee that is the one day that they will not work on the kitchen. He’s going to be away from home until mid-afternoon so there’d be no barking or stress or me getting the headache from hell so Sod’s Law it will be.

I was beginning to doubt the wisdom of me being away immediately prior to the work on the kitchen starting but I’m glad I did because when Ogden is barking and there’s a racket going on in the kitchen I can be sat, in my mind at least, beside a roaring fire in a pub in Chislehurst.

Desperate and deranged

I have had three days of hell. I know people describe days as “hell-like” a lot but when the hell is in your own mind and conspiring against you it really is bloody hellish.

I’ve tried to get across to my GP and a psychiatrist that I’ve been manic for over a year now and it began when I tried to reduce the medication I take. I do this from time to time as do a lot of people with mental health problems because the medication is seventy different kinds of foulness.

I became unstable last year, I don’t remember too much about the event that convinced me that I was manic but a friend does and described my behaviour as “out of character”. This concerned me and it was enough to get me back to my GP and back on proper drug doses again. I didn’t level out and there had to be a chat to my former consultant so that the dose could go up and I still haven’t levelled out.

There was a visit to a psychiatrist who told me he didn’t believe that I was hypomanic because of my behaviour (which is an exaggeration of my normal range of behaviour and mania distorts behaviour) and sent me off for a CT scan on my brain that came back all clear.

I had resigned myself to there being something wrong with my brain and there being some other explanation for my current run of weirdness but I think, in a way, I was really resurrecting an old hope that I didn’t have bipolar disorder after all. Heaven knows what I wanted it to be but some days anything would be better that the bipolar label.

On Tuesday my head exploded. I had an extreme manic episode of the kind I haven’t had for a few years. My mind races so fast that eventually I can’t speak and I want to die just to stop the pain. If anybody ever tells you that mania is purely a physical thing then don’t believe them – I still have the headache and it’s Thursday evening. I managed to talk to a doctor and the two guys who hold Lasting Power of Attorney for me and I don’t think I made much sense to any of them.

I felt desperate and by the time I saw a GP on Tuesday evening I was exhausted and I’m still pretty tired. As you age mania burdens you physically in ways that it doesn’t when you’re younger; the wild energy eats away at your body and soul destroying your mind for at least a while. It is devastating.

Yesterday I spoke to a triage nurse on the phone and I was at the desperate and begging stage. All I wanted was to be both unconscious and yet well at the same time. Mania has me wanting to live with the same kind of savageness that makes me want to die.

I’ve slept and as my energy has became more usable I’ve been able to cook without setting myself or the flat on fire and because my energy was usable last week at least home is largely clean and tidy. Except for the bathroom, I’m never manic enough to want to clean the bathroom.

Today I saw a psychiatric nurse who came to see me in my own home to do an assessment. He’s confident I don’t need hospital or sectioning and that a medication review is the way forward but it’s not going to be as quick as I want it to be. There was a team meeting this afternoon where I will have been a topic of discussion and someone will write to me and tell me what will happen. So any solution is at least a week away from starting and it’s going to be a long time to wait.

I’m angry that I can’t have a quicker solution but when mental health services have been stripped to the bone (and they weren’t exactly fleshy bodies to begin with) then the government decides to graciously sling some money at them that doesn’t even get to fund people like me it’s a pointless anger.

There is no safety net you know, it’s just two pieces of string knotted in the middle – the emperor’s new clothes of medicine.

One thing at a time, living without chocolate & being less manic

I have this great friend who acts as my soundboard and does this kind of motivation coach  (I know, it sounds awful) thing with me. After a five or six years of not being in touch I rang him because my life was in mess and I wanted to talk about somebody taking over my finances and we eventually set up a registered Lasting Power of Attorney.

Once that set up he got me to look at the way I spent money, what I spent it on, how many times a week I visited a cash point, how often I used a debit card and it opened my eyes to just how messy things had got.

Coins & notes

He then suggested that I opened an ISA and began saving. I was skeptical about doing that because I have a low income and didn’t think that there was room in my budget for saving but, as it was issued as a sort of challenge, I took it up. I started with a tiny amount and eventually built it up so that I have a bit of fall back money now and I no longer worry about money.

I’ve always had a problem in keeping things tidy around home. My head is so chaotic that I find it difficult just to keep things less oppressive and dreamed of having an uncluttered flat. A psychiatric nurse I once saw for Cognitive Behaviour Therapy said I had to set targets. He suggested that I should do hoovering once a week at a time when I couldn’t see the floor. I don’t think he got the idea that living in chaos needs very  small steps to get out of that chaos.

Once I no longer had anxiety about money I found that my mind was freed a little and I could assess what level of chaos I could live with and was encouraged to not exceed that level. I don’t often exceed that level these days, if at all, and it’s freed up time to let me bake my own bread and, when I can get my head together, cook fabulous food.

As mentioned in a previous blog I’ve had an appointment with a consultant psychiatrist who thought that what I’d assumed is an extreme escalation of bipolar disorder could actually be brain damage (I can date the change in behaviour quite accurately) and I’m waiting for a CT scan.

The consultant asked me if I had high cholesterol levels (6.2 – 6.8 typical but has been as high as 7.1) and if I take statins and I think he was hinting that there may have been a mini stroke. That consultation changed things for me.

I haven’t had chocolate or crisps since that day and as I’m losing my sweet tooth I can’t bear the taste of diet coke (overwhelmingly sweet!) and I’m now losing my taste for diet lemonade. I’m not even drinking low sugar squash, tea or coffee very much and so I’m drinking loads of water. (Try leaving a glass by the sink and instead of boiling the kettle pour a glass of water – it’s good for your body.) My cholesterol levels, measured after three weeks without chocolate or crisps came out as 5.1!

I’m less manic than I was. I think this is partly because I know the extreme behaviour isn’t necessarily bipolar related and I’m learning how to temper it. As a result I’m not feeding the mania and perhaps some of it was sugar fuelled – who knows?

There’s a little bit of a weight loss – 7lbs – but a long way to go. It’s a small start but a start anyway.

The moral of the story is (and I will repeat this often and regularly) is start on any part of your life that you want to change and concentrate on that. Sooner or later there will be time and energy to look at another area of your life. Some changes will come as a consequence of the first change but things will change. Baby steps are still steps and life, hopefully, will improve.

The biggest lesson I’ve learned is that the people in the know (the medics, the psychiatrists etc., the professionals) don’t always know how to enable you to move your life forward. Being advised to take small steps is great advice but backed up with the idea that to concentrate on just one area of your life is better.

Now excuse me, I’m off to do hoovering for the second time this week.

Decisions, decisions, decisions

I’m not good at doing nothing. I have to be doing something and the art of doing nothing has become about mindfulness – I’ve been practising proper mindfulness for over 10 years not this concentrate on your breathing crap that people sell as mindfulness. Mindfulness isn’t doing nothing of course, you’re actually acutely aware of yourself (if you’re doing it properly) and not in a trance.

I don’t get bored and it’s so long since I was bored I can’t remember what it feels like. The decisions I’m facing are what I should stop doing and what I should be doing.

The community work has to go of course, some other fool can chase the non-existent glory but my voluntary work will stay since it’s simple to do though how it will continue is one of the things that has to be decided. Whatever is decided, those changes will take a few weeks to kick in.

How I run my home is going to have to be assessed. If the results of the CT scan are not too good then I’m going to have to consider, and seriously consider, help from an outside source. I don’t do having help and my independence is a very conveniently placed wall that all the idiots in the world can’t climb. It is my saviour and I refuse to be pushed into thinking that it’s a burden.

There will still be trips away and there’s no reason why they should stop. I travel in Britain on a disabled travel cards so I’m still going to be able to go in style with a massive discount. I will have to consider their length and frequency though, that’s massively important.

image

I’m also going to have to think about food properly. I can’t go on with the chaos even though it’s incredibly difficult for me to not be chaotic and fractured when I’m in the kitchen on the days that I don’t cope.  I think it’s time to stop telling everybody I know about food and ask to see a dietician. I need to start being sensible.

It’s easy to sit and tell myself these things but they’re much harder to put into practice.The level of chaos in my head varies wildly from day to day or from morning to afternoon to evening so good intentions at breakfast can end up in despair and tears by bedtime.

I think I should start with making lists and if it’s as far as I get and no further then that has to be ok.