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I didn’t expect it to happen, but yesterday actually worked out far better than I could have expected. So, OK, I was beating myself up for the first half of it, but once I got past the point of not being able to function, because of the clock. I actually made it work. Lunchtime arrived as always, just after 1 pm, despite the fact, I started my day a whole hour later than usual. I made it, to the right point in my day, at exactly the right time. It actually felt really good, something I had planned out, thought about and pondered over, worked first time. No, my energy levels weren’t suddenly boosted, but that would have been expecting just a little too much. That I know is going to take time, hopefully, not as long as it took to reach permanent exhaustion, but time. The real test will be when we reach next Saturday, will I have managed to get that so longed for extra sleep, and will Adam have managed to get out of the house on time daily, without me sitting in the background reminding him the clock is ticking?

I know that it’s a huge hope, but if I can make the new system work for us both, I actually think it should change a lot more than just sleep. When you spend your entire time tired, worn out to the point that you no longer really function as a person, more existing as an automaton, just going through the motions, well, you become lost. If I am honest, I have been lost for a very long time now. There have been glimpses of me, the odd flash here and there, but the rest has been more like living as a shadow. Illness does that to you, it doesn’t just steal your health, it steals everything about you. I know I am never going to be the bright, active, bubbly person I once was. I’m never going to stick on a CD and dancing until I drop, as I’d drop on the third beat, which would kind of defeat the purpose and also be cheating. All I want is to be able to put life back into my voice and my mind. Sometimes, it can truly feel as though I am no longer me, but that, I have worked out, is a state of mind, more than a fact.

All of us have this image, this montage of all our best bits, we are seeing what is actually a mythical creature that never existed, but we tell ourselves, that is us, and it’s who we were and should be forever. Pick away at the edges, and all its component parts, start to fall apart. They belong to different ages, different phases of our life, they were never, all there at any one single time. I want to be somewhere in my 30’s again, with the perfect unmarked body I had when I was 16, but with the tone and energy I when I was a DJ. I want the hair, I had when I was 34, the zest for life I found when I was 28, and the innocence I still had when I was 18 and every speck of knowledge that I have right now. The talents that were stifled when I was in my 20’s and so much more that it would take my hours to list. None of them, all ever belonged in the same time, she is my mythical creature, who never existed and therefore, there is no way, she can ever exist again. So that voice inside me, that is still screaming, “I want to be me”, is asking for more than the impossible, as in many ways, I don’t even know now, who I am. The last 14 years of my life, have been so locked up in my health, that me, is someone I don’t really know, I just don’t want to be her. “My life was never meant to be this way”, I guess, ill or healthy we all say that, silently inside to ourselves. When Adam and I first married, we had such plans, our lives were going to be so good. This was supposed to be our first home, the place where we set out together, learned how to put together a home and then to sell it, and moved on to bigger and better places to live. We had our lives, everything worked out, right through to that cottage in Arran, the place that would be our final home, an early retirment together. It didn’t work that way. Two room plus utilities, our first and our only ever home. I suppose, we all once thought we would be superstars, bright lights that would burn a trail, taking with us and leaving behind us, nothing but happiness to those who follow. Not sat in a wheelchair, locked inside a home that we love, but would do anything to be able to leave. I have long since given up the wish to be well, to be fit and healthy. I’ve accepted what has happened, and that it can’t be changed, but is it really too much to ask, just to have a little more life, in my life.

I try hard not to dwell, on what I didn’t have time to do, before the door closed, or the plans I once thought, would come to fruition within them. Looking backwards is a trial, one that should be avoided, unless it’s on only the happiest of days. Those days, which regardless of health, would always have shone, the ones that make me smile and always make me happy. Forwards became the only direction I would let my legs, and now my wheels to take me, but some way along that path, I feel I got lost. I am more than someone to be fed with tablets, kept topped up with fluids and occasionally fed. I know I’m a person, but who, I’m no longer sure. I once had so many tags that spoke of me, words that I happily used to describe me, but most have now fallen off, dropped along the way and thanks to my health, I can’t reach to pick up again. That’s what chronic illness does, it steals, it strips away and shreds our lives into such fine pieces, that we can’t put them back together, leaving us only questions, always without answers. We can rebuild, put together a new life, over and over again, but it is only a matter of time, before, it’s all shredded once more. Each rebuild gets harder, each has fewer pieces, as we don’t want to make those mistakes again. We have to build within our strength, within our diminished energy levels and our dwindling abilities. No matter what we do, we find ourselves back here again, asking the same questions and desperately seeking for who we are and what we’re good for.

As long as there is a smile, that glimmer of happiness, we know there is a purpose, a reason that we keep trying to live. Maybe, we shouldn’t be asking or searching for who we were, rather who we are. Maybe, there is more than one reason, why, we can’t make our mythical creatures live. Maybe, we just need to accept who we are, like that person or not, it’s the only one we have, the only option open to us now, as all others, have been taken away. I’m not mythical, I’m human, and a sick one at that, but I can’t change that, this is what life dealt for me. God, I wish I had learned to play cards.


Please read my blog from 2 years ago today – 21/12/2013 – Amputation hurts

I seem to be having trouble with sitting again this morning, there just isn’t a position that will let me sit for any great length of time. It is always the simplest things that seem to make life difficult or uncomfortable……