There’s often the question posed when someone has to deal with chronic illness, one that appears after some time has passed, which is, Who am I?
In this case, I feel that everything that I have ever identified myself with has been taken from me. The list covers everything that I’ve enjoyed – leaving me to ask that very question… because now I don’t know if I could even begin to answer that question anymore.
The worst thing is the lack of focus… if you don’t count the singing, that is. Focus has been the driving force in my life – from reading incessantly to obsessively playing games, tinkering with computers, writing music, and – yes – singing. And that’s the top 5 of quite a long list. It was never great since the fibromyalgia reared his pain-creating head – however, since moving to the Snowdonia area, it’s vanished. Permanently. And with it, everything that is what I see as being a key part of “me”.
The thing that hurts most (… if you don’t count the singing…) is the reading. I can’t read anything anymore – not books, magazines, online articles… even listening to audiobooks isn’t possible. My filled Kindle is going unused, my stuffed Audible apps go unheard, my magazines pile up ignored, and all break my heart because I have loved reading almost since before I could walk and now I can’t. Each time I attempt to do so, I have no recollection of what I’ve read. Instead of reading I skim over the words and take none in.
With focus, my curiosity has gone. This used to be my favourite thing – reading, playing, singing, travelling, driving, listening, studying… just learning was my favourite thing to do… and focus was the main tool for that. Maybe it’s because I can not longer move, so I can no longer explore. Perhaps it’s purely biological – not enough sleep basically messes with your mind rendering concentration, sense and memory almost useless. Or it’s the medication… but I do imagine it’s all of the above and then some. How to change it and get it all back…? That is the question.
I did appreciate what I had at the time, but still… I didn’t quite realise how much I was going to miss it all until it was gone. It’s disconcerting and frustrating. It makes me feel sad and lost. I want them back, and I’ve been trying lots of ideas as to how to manage that, but it’s not working. Particularly with sleep, which I seem to be getting less and less of now.
I used to be quick, intelligent, curious, focused, multi-faceted and even at my previous worst I found things easier than I do now. It’s even taken me quite literally hours to write this short blog, due to fatigue, loss of focus, pain, and lack of any ability to concentrate my thoughts into something vaguely coherent. Because of this I’m left continuously bored and upset, not to mention annoyed because there’s so many things that could be done and I cannot undertake any of them.
I would like it back – all of it. I would like to ease the hyper-vigilance, stress, hyper-anxiety, fatigue and exhaustion, insomnia… but it’s a vicious circle when all you can’t do the very things to help you relaxed because you are far to anxiety-ridden to be well enough to do them. So I can’t really relax. And so on… I see the world only through my mind, my ideas, the data that learning and reading offers – without those things, the world makes even less sense than it usually does, which in turn makes the stress even worse.
I hope that some of the ideas implemented might work – if not individually, then in tandem. I could then perhaps I could get back to me.
Or at least to sleep.