I don’t know how I got there or what made me do it but I woke this morning not on my left side, more twisted towards it, something that meant I had been for who knows how long putting pressure where it hasn’t been for months if not years. My arm was dead I couldn’t even switch off the alarm as it just didn’t reach, doing so with my right was almost as bad. The elevator brought me to an upright position where I became aware that my left ribcage was burning and unbearably screaming at me, I fought to get my pyjamas on and to prepare for the day at a much reduced pace. Each action was being hampered by a body taking revenge on me for a night time mistake, one I hadn’t done before and I hope I never do again. When I stood, I found my left leg was also involved in this madness, somewhere between dead, useless and on fire, but it carried my through to where I am sitting now. At last still and not making any demands on myself, I actually found I was also feeling physically ill, I seriously sat here for a while trying to decide if I had any other choice than to return to bed. It took about an hour for everything to settle, not go away just settle, my arm eventually recovered from what had not been a starvation of blood, if it had been it would have returned quickly, this was more as though the nerves had been crushed and had taken time to swell again. I would say that it was the same problem with my leg but in it’s case it didn’t just return, it returned and then started firing pain from my toes upwards, almost as though it was checking that it all still worked, it lasted for about 10 minutes, then shut up as fast as it started. A great start for the day, some days are better than others, I know that, but on mornings like this I can see all to easily just how some people would retreat to bed and just stay there for the day. I learned when I was still working that these things pass, days might start as thought you have spent the night in hell, but make the effort and struggle through the problems and pain, you will get there, so I keep trying and to date no matter how tempting to give in, the real answer has always been to keep going.

When I went to bed last night I had the intention that when I woke today I was going to start on the third routine I have let slip, to file my toe nails as I was shown by the chiropodist before putting on my socks, well I failed on that one, so it’s now shifted to tomorrow. I can believe the work that it takes these days just to maintain my body, especially after so many years of not taking care of it in any way. All of us just drift through life believing that our bodies are just fine and they really don’t need constant attention, those things we used to do occasionally, become things we have to do all the time. For some reason blitzing ourselves no longer works, we have to tweak little bit by little bit, dust off, clean, dry, put creams on, adjust and position constantly, everyday actions that have nothing any longer to do with our looks, but everything to do with our survival. Ignore one toe and well to not put too fine a point on it, you could actually loose it and even it’s friends! I don’t remember when I stopped being just normal, when I just got up, showered, fixed my hair, added a touch of make-up and went to do what the day demanded of me, it feels a long time ago. For sure I know that when I was a teenager wondering around wearing flared jeans, muslin shirts, Jesus sandals and an Afghan coat, I never once even thought what the snow was doing to my naked toes, or that in the future their care would fill my thoughts, rather than how I was going to get that Marc Bolan poster. It isn’t just illness that sweeps away life being simple, I think it comes to all of us with age, there will be a point in everyone’s life when just reaching their feet to cut their toenails will become impossible. It’s a time when we women will for the first time understand why so many people told us off for those wonderful heels we treasured and teetered on, for so many years, twisting those nails into shapes harder to cut and harder to even find, especially if like my they were born twisted already.

I know there is no way back to my body just being something that is there, something to dress up and to carry my mind around, with every step of illness your body starts to take over more of your life. Try as I might I can’t pin it down, but I can guess that it was around the point when my MS turned progressive, there was I know a point where every day had something in it that meant I didn’t make it through without my body taking over every thought. Each fall, each pain, each stutter, slowly pushed into my life as not oddities but normal, I can now do nothing without it telling me what I am doing, without it demanding my attention and reminding me over and over that I have no choice but to listen. You might reach out right now without looking a lift that glass or mug to take a sip, I reach out but always looking as otherwise my hand will miss, I check and check again that my hand is closed around it before I dare lift it, that lift is always edged with a need to squeeze tighter, just in case. Once at my lips I again push it firmly on my lip before I drink as otherwise, well it drips down my face instead of into my mouth. Everything is about my body and it can feel as though nothing is any longer about me. Somewhere between being a teenager, when everything in the entire world is about you, to now having to try and find a minute where there isn’t a demanding clamour from this self destructing pile, is hard. So many different lifestyles crushed into one life, heading towards what should be a time in my life when I can return to being me, will now never happen. Unfortunately chronic illness doesn’t take retirement, medically I know neither will I, but I never once thought that I wouldn’t even have a body that was simply mine and simply there.