Tiny Glimmers

36-2017-01-08-13-54-23-1One of the questions that constantly goes through my head at the moment is “When will life get back to normal?” I keep wondering when I will get to the point when I just wake up and get on with life and it will feel anything other than totally crazy or surreal or weird. I wonder what it’ll be like to wake up without my heart racing and feeling sick and disorientated and really rather odd.

Then I realise there will be no going back to normal. Only forward to a new normal. My perception of myself and the world is so changed that life will never be the same again. This is not to say that it might not be better than it was before in many ways, and possibly worse in others, but what is absolutely certain is that the old “normal” is gone and I need to find a new one.

I wonder how long this process will take. I know I need to rest, but I am already getting very very bored. My whole life has been spent working absolutely as hard as I possibly could at absolutely everything I could manage – and it has made me very very ill. I know I have to learn to stop. I know I need to regulate how much I do, take things gently, and learn how to protect myself from the demands of the world. I am becoming aware of just how hard I’ve worked all my life and the terrible price I’ve paid in terms of health, trauma, and so on.

But, and this is a big but, I don’t want to spend the rest of my life on the sofa watching daytime TV. I might have a very broken mind and a very damaged mind, but I also have an exceedingly lively and curious and enthusiastic one, and an extremely hungry brain that basically likes life best when it can be an information hoover!

So I am having to learn balance. Which is quite tricky for me, because balance is not one of my greatest skills. I tend to be a bit of an “all or nothing” sort of person. If it’s worth doing something, then it’s worth doing it to the absolute maximum, otherwise I might as well not bother.

Last week was, given all the problems with the assessment process, very difficult. I am also still extremely burnt out, currently very disabled by the whole thing, and finding the whole living business exceedingly tricky. But, since I’ve been in burnout before, I know that it is likely that things will improve. I was very very sick in the autumn of 2001, but did manage to get married in the summer of 2002. I’m looking at that timescale now and wondering how fast I’ll be able to get back to some sort of reasonable functionality.

Obviously, there are differences. I am now 15 years older, and therefore have less energy than I did and am now dealing with the menopause as well, but I’m also fitter from running, which will help. I’m more damaged than I was and have lost more functionality, particularly as far as speech and executive function is concerned, and having burnt out again, might be more permanently impaired (from what I’ve read about autistic burnout), so I might never get back to the same level again, but I now KNOW that I’m autistic so I can build a new life using appropriate strategies and might, at the very least, stop any more damage being done. Back in 2001 I had the assistance of medication (which I don’t at the moment – any medication that might be beneficial is waiting until after formal diagnosis for discussion), but I have now found out how much various forms of stimming (I promise I’ll write a proper blog post about that sometime) can benefit me and help me cope with life and I’ve learnt to listen to what my body needs in a way I never previously did.

So I wonder how long it’ll be before I can really get on with my life again, and, as I lie on the sofa under my blanket bashing myself against a cushion for hours at a time, I wonder how long this episode of burnout will last and whether there’s anything I can do to expedite the process. I have heard talk of those who have been through this sort of thing taking several years to recover fully! I’m not massively keen on that timescale – I know that it might take a year or so to really get settled with everything and process the mess in my head, but I’d really rather like to be at least basically functional a bit sooner than that if I can.

When I look back to September and October I realise just how bad I was at that time and I know I have improved considerably since then. I’m now fully out publicly as an autistic, which has helped so so much as I now no longer have to deal with the strain of any sort of masking or hiding. I’m still envious of those who have their formal diagnoses, but I’m no longer sitting on my hands when people discuss anything related to autism, desperately wanting to shout “ME TOO, ME TOO,” and being completely paralysed by the fact that I’m still hiding my identity behind a mask. That has helped A LOT!

The last few days have also seen some tiny glimmers of hope as far as a few bits of “normal” are concerned. I’m typing this on a Sunday afternoon. On Friday I played my viola for a while, not a proper practice session, but just enough to remember that I could still do it. Yesterday I managed to do a bit of admin – I went through the assorted jobs lists on scraps of paper and sorted the tasks into levels of urgency and wrote them out in some sort of sensible order, categorizing them into related areas so it’s easy to see what I hope to get done. I also made a list of all the people I need to contact regarding concerts, and so on, a list of races that I’m still entered for, and a calendar template so I can start the process of deciding which gigs to accept and which I must decline, which races in the future I might actually be able to do, and which I will have to miss.

Even getting to the stage of being able to think about playing music, going for a run, doing any maths or science, sorting out my calendar, is, at this stage, a massive step forward. From an ordinary life point of view it really doesn’t sound like much, but from where I’ve been and where I still am, it’s huge. A tiny glimmer of light, but in a very dark world it makes a lot of difference.

And today I managed to get out of the flat for the first time in over a week – the first time in 2017 that I’ve actually seen the outside world at all. We went into town, parked up, and had coffee. The coffee shop was way too busy and noisy for me to sit in, so my husband went in and bought the coffee for takeaway while I stood outside bashing my back repeatedly against a pole which carried a sign about when, and for how long, parking was permitted on the street. We drank the coffee outside, then bought some cheese and a few groceries (again, I stood outside on the street, twirling my fingers, while he paid), got in the car, and came home. It wasn’t a long trip, but it was a successful one, and I am reminded that the world outside exists. I’m now feeling very agitated and queasy and will probably crash out later, but that’s part of the deal so I might as well accept it.

Small those these things are, I’m glad that I’ve managed to do something these last few days. Yes, I’ve lost words, yes, I’ve had to do massive amounts of stimming to cope, yes, I’ve been struggling to eat, but I have at least had a bit of hope that the rest of my life won’t be restricted to staring at the TV and playing solitaire on the iPad.

I want to save my maths degree and the book project, I want to participate in some of these gigs and continue to improve my playing, I want to get out there with my running shoes on and do marathons and ultras again, and I want to find that new “normal” life and not be quite so incapacitated as I currently am. The motivation is there, even though I’m still very very unwell and every bit of progress takes a mammoth amount of willpower and effort.

I’ve made an extremely tiny jobs list for the week ahead. It feels like progress. At least I now know what I need to do, which might be the first step on the way to actually doing it.

Tiny glimmers in the darkness…

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