I sat last night with Adam and watched a documentary about the Nomads in Siberia. Just as I have felt all my life as I saw those amazing landscapes and skies, there was that pang that screamed I want to go. I doubt if I sat and thought about it for an entire week that I could think of a more unsuitable place in the world for someone like me to go. It’s not just Siberia that I long to see, I would settle for Greenland or possibly Iceland. Basically, anywhere that holds that wild bleak snow covered miles where only the hardiest can survive. No, I don’t fancy myself as a wild woman, far from it. The whole idea of eating raw reindeer liver fills me with horror, but I would rather that, then lie on a beach and toast.

As yesterday progressed I had slowly gone downhill, right tot he point that during the last half hour I no longer knew how to even sit. I found myself with my fists placed on the settee cushions, pushing my upper body as far as I could towards the ceiling without standing. I was desperately trying to release the pressure and pain within my body by just lifting its weight. It wasn’t just the pain I was trying to beat, I was equally trying to find the space that would let my lungs find some air. To say I was feeling rotten was putting it mildly and I truly wished that I had just given in earlier and gone to my bed. Getting used to the fact that just because a programme was originally shown on a normal TV channel, doesn’t mean you can’t watch it whenever you want, even in sections should you choose, still often escapes me. I know that without a doubt if there is a decade to be housebound in, this is it, which I’m not too sure is a good thing. I truly appreciate that I wasn’t a housebound adult in the distant past. Finding not just things you could do, but could have afforded to do, must have been a nightmare. Even the most well off families must have wondered what on earth to do with someone like me. The poor, well they would have been forced into the workhouse. Most of the poor didn’t do ill, they worked or they died. The problem with the fact that being housebound now isn’t such a bad way to live is it takes the pressure off anyone for finding a way to get us out of here. As humans demand more and more for the world to be at their fingertips, unwittingly to date they have also been making life better for those of us who can’t access it any other way.

I know when people think of such things like disability aids, they don’t think about things like TV’s, microwaves and all the rest of our everyday gadgets. All too often it is those things made especially for us that are first in their minds, wheelchair, walkers, hoists and things like that. Those items have their uses, but for me, the ones that have made the biggest impact on my life had been far more mainstream and I’m quite sure that most would say the same. Imagine spending a day in the house of the 1940’s, how well would you manage? I had a quite laugh to myself the other day, Adam had ordered a new smartphone as his points meant he could upgrade for free. What he bought made me really laugh but mainly because he knew without a doubt that I was going to have a dig. For years, I have complained about the size of buttons, screens and so on, at just how difficult they were to use with poor dexterity. His new phone is bigger than his last, he claimed the smaller screne was hard to use due to fat fingers, well that was his excuse. He made this over exaggerated effort to show the difference in size and the difference it was going to make for him, whilst not looking at me as he knew what I would say. He was totally right but I avoided saying “I told you so”. I just think he has grown up and realise squinting at micro anything is just stupid. Even now though, I think the designers of all these things are missing a trick, as for pennies they honestly could open up an entire new market by simply making a few adjustments which would mean the disabled could use them too. Changes so tiny, that I doubt the rest of the world would even really notice.

Last night, bed was a total joy, the normality of pain shooting through the roof wth that switch to horizontal had vanished for some reason. Don’t get me wrong, it wasn’t painless, just nowhere near what I expected. That’s one of the oddities of chronic pain, finding out that you are still in pain can be a joy if the expected levels are out. I never thought I would ever find myself being happy to be in pain, but I am sure there are a lot out there who totally understand where that statement comes from. All yesterday and from the second I woke today, I knew that I was suffering without even moving. When your brain is engulfed in white noise and an oppressive pressure that all you want is to shut it up and stop the pain, there is little more annoying, nor a better clue that your body is just waiting to join in. I lay this morning for a few seconds, wondering if I could avoid things getting worse and knowing that was just a dream. Even then I already knew that I felt worse today than I did yesterday. The deep cough that rearranged but didn’t clear the contents of my lungs was my second clue, quickly followed by a cascade of others. I hadn’t been awake for 30 seconds and already I just wanted to go back to sleep.

Today is another curl up and forget the world exists day. Everything is still acheing and there is now true pain in the back of my lungs, the booster pills both last night and today though has delt with that. I truly have to have a shower today. I was going to have it on Friday, but I felt rotten then and it felt as thought a shower would kill me. I know it wouldn’t have, but that was how I felt. So wrapped up in my bodies problems that the thought of caring for it seemed not just wrong but absurd. Why should I care for something that so clearly didn’t care for me? Two days on and you don’t know how much I wish I had just done what I should have back then.

Read my blog from 2 years ago today – 14/06/13 – Nutters unite

It feels like a really strange day today, you know one of those days where everything just feels slightly wrong, not that you can put your finger on it, no that would be expecting too much. Life doesn’t supply clear answers, it prefers to……