We are up early this morning and all because of a misunderstanding in a conversation we had yesterday. Adam had noted that he managed to deal better with his day when he was up that half hour earlier, as we forgot to reset the alarm after the hospital visit. I thoroughly understood, as I used to be the same, if I was up with plenty of time to potter around getting dressed, doing my makeup and even some housework, well my day went well. Yesterday’s mistake appeared when I said “Well set your alarm for 7 am then”, he thought that I meant the main alarm in the bedroom. It was just his mobile I was thinking about, so the alarm sounded and up I got, not too happily at first. I think he missed the fact that if I were to be up every morning at 7am, I would have to go to bed at 8:30pm every night, something I am not going to do. I don’t hear his mobile thanks to my earplugs, so he can get up when that sounds and I can sleep on until 7:30. After all, I used to be up every morning at 4:00 am on work days and did so without waking him for years. So I don’t see why it can’t work the other way round. It has been one of the things I have been wondering about for a long time, what happens when my ten and a half hours sleep at night stops being enough. It’s bad enough chopping my evening in half as I do at the moment, but the whole idea of going to bed even earlier, well that just feels so wrong. For some reason, Adam has always required a rather massive kick up the backside to make sure he is up in the morning. I used phone him from the office, acting as his third alarm to ensure he was up for his work. Getting up at 7:30 doesn’t just suit me, it means we both know he is up and on the move. But I know the day will come that I will need more sleep, just as it has crept up from just five hours a night to where it is now, it will increase again. What happens then, as Adam really needs to keep working, and we can’t afford for him to lose the job he has. It’s odd how the things that are important to us when our health takes over. I, of course, didn’t want Adam to lose his job even when I was working, but it wasn’t half as important as now and not just for the money. His being out at work means so much more now as he needs to be around other people, and we do need that break from each other as well. We both know the time will come when my health demands that his role as a carer will step up, for now that chance for him to be part of the outside world is majorly important.

I suspect if we all sat and thought about it, there isn’t a single thing in our lives even our values, which haven’t been changed by our health, from the tiny to the major. It sometimes feels as though it has taken over everything, and I do mean everything. Just looking at the paragraph above, there is a list of things there that have an entirely different importance applied to them now than they did eight years ago. I suspect that would probably be the same for almost every paragraph that I have ever written in this blog, change after change after change. Things that used to be important, now not valued at all and things that I didn’t even notice before are now so important that if they go wrong it feels like the end of the world. I just thought of one small but equally major thing that is a perfect example. I drink nothing but caffeine free diet coke. Should for some odd reason this isn’t delivered, or we run out, you wouldn’t believe how wound up and how personally I take it. I know that my emotional center is out of kilter, and part of that feeling is down to that, but that is just a part. I honestly now place a higher value on a bottle of coke than I do on the rest of the food, not having it is like someone cutting my throat. The whole idea of having to drink anything else, well it is almost unbearable, a few years ago, I wouldn’t have batted an eyelash. As I said, I know part of that is down to the damage to the lesions on my brain, but I think there is something far stronger behind the value I apply to different things these days.

I first spotted it when I was first unable to manage to eat large quantities of foods a few years ago. At that point as I was still working in the companies offices, grazing as I do now, wasn’t an option. So I had small high protein and calorie shakes that I could sip, but I only liked a few flavours and utterly hated the orange ones. Occasionally, the orange ones would be delivered, and I felt myself for the first time being upset by something that didn’t actually matter that much. It was something that I just couldn’t get my head around as I had never had that kind of petty reaction before, so I set about analysing it. I don’t remember how long it took, but I did find the reason; I believe it was because I for the first time had realised just how much of my life had already gone. I had only had my wheelchair for a short while and at first I saw it as an enormous boon to my life, that was until I discovered the reality of the outside world. A world designed by the able-bodied on a day when they switched off their brains, totally inaccessible. The ultimate truth of my illness was beginning to hit home; everything was slowly slipping away from me, and I had less and less. Everyone else still had full and active lives, they went out for dinner, clubbing, the movies and were free to go anywhere, but what did I have, orange protein shakes. The more my health was boxing me in, the more importance I was putting on the small things that I could do, or could have. Soon I was going to have even less and less so the little I had, had to be right. On the surface, I was more than aware that it made me sound and look like a petulant child, but was it really asking too much that what I had to eat was at least palatable. My values were becoming self-centered, and I didn’t like it at all. I by nature had never been self-centered, I was the person who thought of everyone else first, yet here I was becoming locked into looking inwards only.

It took a long time for me to understand what was behind it all, but the core reason what simple, I was feeling cheated. Something had stolen my life, and what I had left, well I deserved to have what I liked and what I wanted. At first it wasn’t a conscious decision but these days there is a large dose of choice thrown in there too. My brain had made a decision for me, and it was right, it just came out wrong. Having a hissy fit doesn’t help anyone, sometimes when you don’t have full control over your emotions those hissy fits appear when the truth is much simpler. My life is so much more intense now like and dislike aren’t strong enough words for anything. When every second counts, a second doing something I don’t like is like, spend hours doing something I once hated. If I am going to do something, well it has to be something I enjoy, having to do it out of requirement means nothing to me. Take having a shower, I know everyone has to wash. But the water causes me pain, and the whole process is exhausting, is it any surprise that my brain ditches even the notion of doing such a thing? Food, drink, showers, sleeping, activities and sleep, all have a value they never had before.

I like everyone else who is chronically ill, just didn’t realise the actual impact. I know I have said before that I had these steps I thought I would go through. From able-bodied to walking stick, from walking stick to a wheelchair user, from wheelchair to housebound and housebound to bedbound. That is how I think most would see their course of progression, but we totally miss out the smaller things, which are in truth, just as big, like food or clothing. I have just sat here for a few moments, desperately trying to find something in my life that my PRMS hasn’t changed. I can’t think of a single one, none of us expects that when diagnosed and I would happily bet money on that one. I know I never foresaw a future where I would have difficulty just eating what I would expect a five-year-old to, or that sex would be just a distant memory. But that is just the way it is, I can’t change that, I could either drive myself insane worrying about it or trying to change it back or I can accept it. I know all lives change as time passes, but there is an enormous difference between going with the flow of society and finding yourself with no choice but to do as your body tells you. It’s easy to see why some compare it to being in jail, but there is one huge difference, most criminals get probation, we’re stuck here forever. Sorry, I couldn’t resist saying that it honestly isn’t how I see it at all.

Values and life might change, but one thing doesn’t, right and wrong. I can’t help my surface reaction, any more than I can control my inner feelings. But I still know what is right, and that’s the greatest value anything can have and not just what is right for me.

Read my blog from 2 years ago today – 24/05/13 – Word after word

I have to start this morning with a bit of great news, Jon, Teressa’s husband had been given his residency visa, so he can now stay here forever! I am so glad that all those legal processes are known over, and they can get on with their lives as any couple should be allowed to do. With his visa now confirmed he can now……..