Yesterday’s activity and constant interruptions were a perfect recipe for my body to find a way of making me suffer, it wasn’t anything major, just that all my limbs decided that they quite simply weren’t going to work properly. I spent the second half of the day feeling like I was the most useless object on earth, there wasn’t a spare drop of energy or strength in them, just smoking or having a drink was something that felt like I was asking my arms to lift a 10stone weight, not something light and normal. It is another one of those odd feelings, your mind is telling you everything is normal and working, then you try to do something and suddenly you find that it’s not, every time I stood up, I wasn’t sure if my legs would hold, they did, but that feeling is very off-putting and is in itself actually debilitating. When you know from experience just what can go wrong, because it has happened many times before, you start to mistrust your entire body, that mistrust then grows and becomes a block that isn’t always easy to get past. In some ways, it is like learning to do everything again, over and over. Our minds have far more power over our physical ability to do anything than we actually believe until we find ourselves either scared or put off doing something, just because it went wrong in the past.
Oddly, I have never really feared falling over until the last year or so, well why would anyone, as we just get up again, possibly with a scare of some sort to show what went wrong, but we get up and we go on. I suppose my childhood loves of both ice skating and horse riding cured me of any fear of hitting the ground, it’s impossible to learn to do either proficiently without discovering the downside of human flight. It has been several years since I was able to just fall followed by simply standing again, for several years I found that I had to crawl to somewhere that I could climb up, slowly getting myself back to my feet. When I fell a few years ago and found to my horror that I had lost so much strength in my arms that I could no longer crawl, well the fear appeared. I still don’t fear the actual fall, but I do fear being stuck on the floor unable to find a way of getting back to my feet with ease or without assistance. These days if I hit the ground, well I have to resort to a form of commando crawl, usually after first removing my pyjama trouser, commando crawling doesn’t work with them on as they just slip down and once over my feet, they stop me from getting any grip and I land up using energy I don’t have, fighting with them, rather than getting off the floor. On days like yesterday and today when my arms and legs feel drained all the time, well I honestly don’t think with or without trousers I would be able to crawl anywhere, it means that the fear in my head is even bigger. Clearly, every time I stand up I have to get past that fear and as I know where the danger points are, well I take greater care at each and every one of them and should I feel that something is wrong, I stop dead and hold onto or lean against something until I feel able to continue. I can’t give you figures as to what the odds are of making any journey successfully, but the figures actually don’t matter once that fear appears, there is no point telling yourself to stop being silly as it the odds say this or that, once it’s there, it’s there to stay.
Brains are at the same time the most wonderful and most annoying things that we have, without them life would be impossible, but they too can make life almost as impossible without our permission. As I said yesterday, just like we can’t unlearn all those things we were taught in our childhood and have learned through experience, we can’t undo any of what we have learned painfully through illness either. There is an amazingly hard battle that our minds go through with every step of the downwards process of chronic illness, one of the hardest are those we have learnt through pain. As babies, we learn that pain is bad and that anything that causes pain has to be avoided, once we have burnt our fingers once, we don’t do it again in a hurry. So imagine what it is like to find that everything you do, including just sitting or lying down is painful, what does that teach us? You can’t go through life being scared of everything, yes I do have a new scale of fear and I have learned that pain has to be lived with, regardless what I once believed, pain can’t be avoided and has to be ignored. Life is a constant mental battle, you fight all the time with both what you have learned about life in general, our personal feeling and the basic animal instincts of what just should be avoided. It means I land up just like I did yesterday, not wanting to let my health getting in the way of others, trying not to cause myself pain or to exhaust myself and having to accept that the final result will be I will fail at all three, it just a matter of what degree I will fail in all of them. That sounds sort of bleak, but trust me it’s not quite as bleak as it sounds, you have to take all these things and twist them around, putting a bit of spin on it does no harm, in fact it can do a lot of good. Spin is something I learned when I was working, when you are responsible for company reporting, directors often want to find the good in bad results so I became quite proficient at it. These days, well take yesterday, I could have punished myself for every tiny bit that went wrong, for not being able to do more to help the delivery man do his job, for the pain I landed up in and the fatigue I created in my arms and legs, twist it and the picture is very different. I did assist the poor guy, I moved and lifted more than I should without dropping or breaking anything, yes it caused me pain, but I didn’t let it stop me and without being stupid about it, well I did well. Shopping day is always tiring, but I did well, I did more than normal and I wasn’t that bad that I had to go straight to bed, so I achieved a lot. Spin isn’t lying to yourself or anyone else, it just finding the good that is always there, something that never does any of us anything but good.
I just spoke to my doctor and he is now going to send me out yet another type of laxative, plus some suppositories. We once again had the discussion about the fact there is nothing low enough down for me to pass, but he hopes they will stimulate my bowel. I told him about the pain I was in the other night and he wasn’t surprised at all by it and said that constipation as I already knew can cause all of it, which doesn’t help me any. Once again, I asked him about how long this would go on and he once again went over the fact that my bowel has been shut down by my PRMS and all we can do is keep trying until something works. Two months without clearing my bowels and four weeks without passing anything of any volume just isn’t right, but he really isn’t that concerned, I just wish that I could share his lack of concern, maybe I have to find the spin on this one as well, somethings just need a little more work than others.
Please read my blog from 2 years ago today – 18/02/13 – Imprisonment
Adam is on holiday today, but I am still on my own. He has taken what I know is a much-needed break for him and gone to see his Mum who lives about 40 miles away. Because of the distance he doesn’t really see her that much, having said that, I have never known someone who once they have left the family home, who has spent so much time talking on the phone or texting each other. Our families are so different………