At the very second I think our bed looks really silly, the cause was a stupid half hour a couple of weeks ago when Adam came to bed at around 5 am and woke me because he kept pulling the Duvet off me, I made no secret that I was pulling it back and had even checked where the edge of the Duvet was and had pulled any spare across me to his side of the bed. As soon as I started to settle again, the gentle tugging little tugs began again, not a straight forward pull but a series of tiny tugs, I don’t know if I wasn’t meant to feel them or what but after the fourth round of my tucking the duvet behind my shoulder to close the gap down the middle and it being tugged free again, I lost it. It might have been the middle of the night but I was angry and he knew it. Like most couples around the world we have had small spats over covers at many points in the past but this one really got to me, maybe because of this new important that every second of sleep has grown into, but this one got to me. Adams uncle had died a few months ago and he had received a small but unexpected amount of money, money that we hadn’t made up our minds what to spend it on, suddenly we had the answer, a king size duvet for our double bed. It had been something that I refused to even think about in the past as well it just looks so silly, swamping the bed in this huge duvet, yes I had seen it before and I didn’t want a silly looking bed, we now have a silly looking bed. It seems that there is nothing sacred any longer, my health is slowly taking over every aspect of our lives, even the appearance of our bed.

I am still sticking my heels in as deeply as ever to the whole idea of changing our home when it comes to disabled adaptations, we have no grab bars or anything else that could even be seen as an adapted just for my disabilities. The closest it gets is my perching stool and as ugly as it is, it is needed as I just can’t stand long enough in our kitchen even to make my lunch or to take my meds. I am sure though that like everything else if I wasn’t so pig-headed about it, I might actually start to find them helpful, but I can’t get my head past how it looks and what it would mean. I still see it as the final surrender, that moment when I have to put my hands up and say, I am disabled and there is nothing left that I can do by myself, without assistance even if that assistance is an object rather than a person. I suspect we all have that red line that crossing will be the most painful thing to do, that one thing that screams I have lost. I, unfortunately, have rather a long list of them, from grab bars, to changing the layout of the house so that if I fall it won’t be onto a pile of crystal glass and the worst most terrible thing I can think of, is a commode in the bedroom. To me, that is the day that they might as well take me outside and shoot me (and I do mean outside as it would make a terrible mess of my carpets) as I can’t and don’t want to even think about what else goes hand in hand with someone needing such a thing.

I believe that it is nothing more than the human state, that stops us from imagining ourselves in such a state of poor health, just as most of us can’t imagine ourselves as a truly old person, we are all immortals in our own minds, but chronic illness often forces us to, whether or not we want to. It is one of those cruel things about being ill, we are faced not just with our own mortality, something that is hard enough on its own, but we are also forced into seeing ourselves as an invalid, in the traditional use of the word. The person who lies in bed, unable to do anything, even reading a book takes too much energy, all we can do is lie there, being fed and cared for and it’s a difficult thing to imagine in any way as to how it would feel. Yes, I can conjure up this romantic picture of lying there with my hair perfectly brushed and laid out around me and I’m dressed in a victorian nightdress for some odd reason, but how it would feel, that I can’t get my head around at all as I just get this scream of NO coming back at me and the closer I get to the image the louder that NO seem to get. I can only guess that it is part of the same thing that makes us believe that in our heads that we are always a teenager, despite the fact that our bodies bear no resemblance to the one we had then, our minds just aren’t laid out in a way that allows us to even imagine ourselves as any less than we are at this moment.

It is so counter-intuitive to everything that we do in our minds when we think of the word future. The future is always a bright and breezy place to be, it is a place filled with flowers, fun, and fineries, it isn’t a bleak and black monster, as our dreams of the future are alway just that dreams, not nightmares. From those first dreams we form in childhood, they are always of things being better, of improving our lot and even now I still have those dreams, but the difference now is there is this horrid thing called reality that can’t be ignored. Try as I might, it always appears and stands there scolding me and telling me to stop being so silly as those airy fairy dreams, just can’t happen, no matter what I might want to think.

Chronic illness is an insidious worm, slowly munching everything that comes within range and like anything that never stops eating, it just gets bigger and bigger. We can wish as much as we like that it was a caterpillar, but it never turns into a chrysalis and it will never have beautiful wings that will fly it away from us, we’re stuck listening to its munching. Self-preservation is our only defense and maybe it is that that is screaming NO, maybe we aren’t supposed to be able to get past it because we simply wouldn’t be able to cope if we could. I believe that what we imagine is always worse than it turns out to be, imagination has no limits, but our bodies and our reality does. To date, there isn’t a single thing that has turned out to be as bad as I once imagined that it would, I suspect that that will be the truth of our futures, we can’t imagine it because if we did, we would scare ourselves too much to ever get there. All we can do is keep going until we find out for ourselves, we might all have our own ideas about things like living wills, something I am very in favour of, but the truth is that writing one is guess work, based on what we have seen and what we can imagine, when you can’t imagine what you are left with is the truth and none of us know that until we are there.

No matter what reality says, I can’t let go of my dreams and I don’t think that is a bad thing as without them all I would have left would be my nightmares and no one wants to live within those. Dreams aren’t that silly, even if they are formed inside a silly looking bed.

Read my blog from 2 years ago today – 17/05/13 – This is my place

A dull drizzly start to another weekend in Glasgow. I know most people think Glasgow is always covered in drizzle but take it from a non-Glaswegian, it isn’t, well not any worse than it was when I lived in Plymouth. Your relationship with the weather really does change once you have no need to actually go out in it. I never was one for sitting around in the sun, I was actually totally……