Limitations, six (now seven) and three

One thing has become very clear this past week or so and that is my previous limitations have changed. My ability to do stuff, whatever the stuff is, has lessened of late and I have to accept this. It may be a temporary thing or it may be a permanent thing but, either way, I have to deal with it.

I have a list that has guided my way of living for around 20 years. They were given to me by a consultant psychiatrist to try as an “experiment” because he knew damn well that if he told me it was a good set of guidelines to live by then I wouldn’t do them. The whole of our professional relationship was, it seems, based on a series of dares on his part and challenges to his thinking on my part but that is another story.

The list he gave me goes, in no particular order

  • Be Safe
  • Eat
  • Sleep
  • Medication
  • Meditation
  • Mindfulness

The first one happens automatically if I do the other five and most days I manage to do them all. Not necessarily well but I do them and that’s a big achievement.

I now have to add “Know Your Limitations” to the list and it’s incredibly difficult. I’m the person who worked 16 hour days without batting an eyelid, the one who could walk 25 miles without much of a sweat and not a blister to be seen, the one who faced down thugs in the pub I ran when my husband hid, quite literally, under the counter and I am now a person of limitations.

There is, luckily, no puzzling over where to start. I have this very sensible friend who has also been my kind of life coach for the past 10 years. He’s really good at it and has no knowledge of how poor mental health works so his suggestions are entirely practical and, for the most part, workable.

He has had me writing a daily ToDo list for a long time. I’ll write tomorrow’s list tonight and I know what I need to do so my list will look like this –

  • Turn the washing machine on
  • Hang the laundry up when the wash finishes
  • Have a nice bowl of fruit salad sat on the step with Ogden

The trick, and it’s a trick worth learning, is to write only three things on a ToDo list and make the final one a nice one. Never put a thing that you do routinely on a ToDo list; those things don’t need to go on one and they just make a list longer. Rarely will I be unable to finish a list with only three things on it. Notice I’ve broken down my laundry into two of the things and the third one is a treat. I will complete that list tomorrow and, here’s the really good bit, everything I do after that will be extra and we all know how good doing extra things feels.

The burn, and there is a burn now, is that I’ll have to limit the extra things. In order to work out how long things will take me and how important they are I’ll have to write them down because that gives me a sense of reality and not some random things running around my mind bumping into one another.

The guidelines will be my list of seven and how I’ll execute them will be the list of three. Tonight I need to do something that will help me eat properly tomorrow so I’m going to wash and slice the potatoes I harvested this morning. I’ll also slice the onion I harvested yesterday and they’ll form a meal. Preparation is a good thing as long as it doesn’t wear me out. I’ll cook sous vide tomorrow so I’ll eat well with a minimum of fuss.

So what else can I do to make things better? I’m going to spend less time on Twitter. I’m finding it quite hard going at the moment so it’s a welcome break and there’s lots of politics on my Facebook so I’ll get my fix there. I’m going to stop watching soaps – they’re moving wallpaper and light on the mind but they take up time I can be using to do something relaxing and, as I’m relaxing more I’m reading more and that makes me happy. There will be days when I can’t read but those are the days that Ogden will get longer walks and then he’ll be even happier.

Changes, my life is full of changes. Bipolar disorder rules my life with the incessant changes it throws at me and management of it is dodging, ducking, diving and changing at a rate I can’t cope with but accepting my limitations are part of that change, at least for the time being, gives me time and space to be safe and that’s good, really good.

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.

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.

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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.

Eric, executive functions and exhaustion

I had an appointment with a consultant psychiatrist this afternoon. Eric and I go way back – 15 years – and he was the first consultant I saw when it became obvious that the brand of bipolar I have was way too much for junior doctors to get their heads round. He hadn’t been in Bristol long and so we were both experiencing new things. We got along great and I was discharged about a year of his care.

After it became obvious that, after a year or so of mania, I just wasn’t going to get any better my GP made a request for me to see a consultant and, in particular, the one I’d seen for about 10 years. That wasn’t possible so I had to wait and see who I was going to get an appointment with and just how much experience they had.

Today I saw Eric and there was a short period of happy catching up before we began the consultation. I trust Eric implicitly and found it very easy to be open, to disclose things that I feared and to cry when it all got a bit too much. He’s a kind person and he knows how to elicit the information he needs without stressing the person too much.

The consultation lasted an hour and I talked, asked questions, forgot what I was talking about, cried, became afraid and anxious and, eventually settled into a state of acceptance.

He thinks that the problems I’ve been facing for the past year or so are coincidental to me easing back on medication last year and not a result of them and that they are about my executive functions. He asked me about my cholesterol levels and if I took statins or had been offered them. It’s not a big leap to think that he was thinking along the lines that I’d had a mini stroke but he wasn’t saying that I had. This is where the fear and anxiety kicked in because I know the link between high cholesterol and strokes and I don’t exactly have low cholesterol levels. On the other hand it could be something else that is interfering with my executive functions and so we have to begin the process to find that now.

This is where I stopped being afraid and anxious and became logical and calm. I am going to have a CT scan and I like CT scans. If you close your eyes as your head is scanned it feels as though you’re drifting gently along on a stream and it’s five minutes of peace and mindfulness that feels a lot longer. I had one about five years ago and it was returned as normal so we will know if there is a problem with my brain straight away.

Tonight I’m exhausted but I need to write this down. I’ve spoken to my sister to tell her what’s happening, sent texts to the people I needed to text and now I’ve satisfied the need to get all this out of my head so in an hour I can take a sleeping pill and get a good nine hours sleep. Apart from a short visit from someone tomorrow whilst Ogden is out I have a day to relax and just be.

Whether this turns out to be my bizarre version of bipolar disorder evolving into something even more bizarre or it is the result of a mini stroke or something different all together then worrying about it isn’t going to make much difference. Logical me has to remind anxious me of that when I do get jumpy.

So off to bed and go with the knowledge that, one way or another, I’m not right in the head.

Shredding, shredding, shredding

As you may guess by the title of this post I’ve been shredding a lot lately and doing even more decluttering around home than I thought was possible. I’m not the kind of person that holds on to possessions but they can always be just a little more organised.

I used to live in chaos because I never used to know where to start to stop the chaos. If something is so hugely overwhelming that you have no idea what to do it consumes you almost entirely but start somewhere you must.

I actually began some years ago by listening to a good friend who holds Lasting Power of Attorney (LPA) for me and is also a financial adviser. He took a good look at my income and my outgoings and showed me where I could be saving money and, more importantly, how to save for a rainy day. I now have my rainy day money and I manage my financial affairs, for the most part at least, quite well.

Once I stopped worrying about money I could concentrate on other things and the flat became tidier (though it will always be tatty) and I am able to feel more in control. These past few days have been about shredding old paper work that was from my last job and now that it’s gone all the file boxes can be used for storing my things. It’s lovely to see them all stacked up neatly and almost everything has a place and is in it.

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I’ve gotten rid of a chair that was beginning to really bug me this week and have been able to move my tallboy (more of a medium boy actually) into my store room and get my dining table out again so I have more space and I like the look of it. This is an incentive to keep the level of domestic chaos down considerably.

I’m getting a new kitchen installed – hopefully before the end of the year – and I can buy more cupboard space than they are obliged to give me so I’m already planning that in my head.

All this will give me the time and (literally) the space to manage my health and I’ll be able to do it at my pace without the nagging of the things that need to be done dancing around in my head. Now all I have to do is work out a way to get the laundry pile down to a manageable level. Anybody got a box of matches they don’t want?