Avoiding life

I’m running on avoidance this week. That means I am doing everything and anything that I can think of, just to avoid doing anything. It that makes sense to you, then welcome to the avoidance club. It is probably one of the most stupid of human states, that exist. It would quite simply be easier, to just do what we either have to, or to just declare we aren’t going to do it. But, no, we flit from this to that, and back again. Looking at web pages that hold no value, or even interest, rather than close it down, and if not do what we need to, at least, do something of value. Granted, avoidance isn’t actually dangerous, well not unless you happen to find yourself in the kitchen. Yep, that is where it can get truly dangerous, to our waistline, especially, at this time of year. Those nice little treats, the things we can only and do only buy in the run up to Christmas, have somehow snuck themselves, already, into our cupboards. It was bad enough before, but now, well now not only, can you take a nice healthy handful of nuts, but you can cram a lebkuchen or mini mince pie into your mouth and quietly, roll away. We kid ourselves that’s “it’s just one, it won’t do any harm”, but that’s five already and it’s not even lunchtime. Avoidance, in November and December, can turn, truly deadly.

So what is it, that we in the avoidance club, are working so hard to avoid? Nothing, absolutely nothing, well nothing of importance. That’s the whole reason, it’s so stupid. All we’re working on avoiding, is the normal, the mundane and the everyday. When you have PRMS, or any of it’s cousins, routine, is essential. It’s the thing that keeps the worst effects of our health at bay. That stops those wild spikes, those spasms and the pain we don’t want to feel. But routine, well it’s routine and occasionally, somewhat boring. I know all that could be read and taken in different ways, but no I’m not bored with life. I bored with the things I have to do to live it. Right now, I’m bored with every single little bit of it. I’m bored with getting up to the alarm clock & sleeping when the clock says it’s time. Of spending more than half my day asleep and of that time always feeling wasted. Of never having enough sleep, and always wanting more. Of eating the right things at the right time, because my guts can’t take it if I don’t. Of the frequent spells where I consume more medication daily, than I dare in food. Of sitting each and every day at my computer trying to fill my day, because I can’t have a job. Of the people who can’t see past my disabilities to see my abilities. Of the stairs that trap me, making the outside world inaccessible. Of the body that even when assisted can’t take the pressures of being outside even for a few hours. Of the fatigue that stops me for dressing, putting on my makeup and never being able to feel feminine. Of the pain that won’t let me care for me, far less my home. Of seeing dust and not having the strength to clean it away. Of not being able to at least walk to the kitchen, to stuff my mouth with what I shouldn’t be eating. Of having to use a wheelchair that causes me nothing but pain. Of all the problems that life in a chair brings with it. Of having only friends who I have to type to, as there is no one here in my reality. Of a reality so false, so manufactured, that nothing is unexpected, changed or exciting. Of not being able to deal with the unknown, as the fear of being lost is too great. Of being alone all the time. Of being too tired, too fatigued and unable to handle people around me. Of a brain that can’t keep up with conversation. Of a mouth that slurs and stutters my words. Of muscles that twitch and jump when not required, always in an embarrassing fashion that never stops. Of a bladder, that doesn’t understand the most basic thing it was created for. Of a house that doesn’t let me move freely when that bladder or its friend the bowels demand. Of having to maintain balance, while juggling everything that life is and it isn’t. Of being caught in a life so alien, that if an outsider was forced to live it, they would class is as being in prison in hell. Of all of that and a million things more. So as stupid as it might sound, despite routine being my saviour, it is also my jailer and my only escape is avoidance, as dangerous as it is.

Even in the midst of avoidance, you have to obey as many of the rules of life, as possible. You can bend a few, stretch the odd one, but drop any and the price is too high to contemplate. I often wonder if half the truth of fatigue is down to never being able to drop a single ball, as it won’t smash into the ground, but into your soul. There are just so many rules, far more can’t dos, than cans and even fewer possibles than impossibles. Is it any surprise that we at times, we just get bored of being the juggler. I remember when life was easy, you got up and you did what you wanted. Before someone says, well I have to work and I don’t want to do that, well I’ll swap with you any day, you can leave your job and find a new one, I can’t. No job I ever did, was as hard as living like this. So as I said, you got up and you did what you wanted, when did I last do that. I get up and want to go back to bed, but I can’t, if I lay there any longer, it would be bedtime again. 11 hours of being awake, 8 hours that can be intensely boring, regardless what I do, what order I do things in, they are always the same. Can you imagine spending 4 years, day in, day out, doing absolutely nothing different from the day before and I do mean nothing. Even long periods where every meal is identical every day. You could lay it out in three columns, each bowl, each plate identical, for months. Weekends, birthdays, even Christmas, don’t really exist, as my days, they have to be kept the same, otherwise I pay for it. The movie “Groundhog Day” has nothing on my life, he at least realised there was a way out, there is none from mine.

Most of the time, I’m happy, more than happy, I’m content with my life. Trust me, content, is far harder, to achieve than happy. Then days like this appear, where I want to smash it all into pieces, and refuse to do it any longer. Days when I want to stand up and shout at it, do your worst, I am so bored with all of this, let me out! It isn’t that I am bored of writing, of chatting on twitter or spending time with Adam, I guess that what I could really do with is a holiday, but how do you take a holiday from life. I can’t go anywhere, I can’t pretend that my life is anything but what it is. So I picked on something I could do, I can avoid. I can take my routine, and for just a couple of days, I can file off the edges, smooth off some of those “todo’s”, sit with a slouch rather than constantly check my posture. Be comfortable, rather than watchful, just stop being the goody-goody my health has made me. Eat, if not all of the bad things I’d like to, one or two of them here or there. Just chill a little, kick back and be a slob. For a day, maybe two at the most, it doesn’t hurt, as long as it doesn’t become a regular wheeze, it doesn’t hurt too much. It all sounds so easy, but remember, one eye always has to be watching and one ear listening, just, in case.


Please read my blog from 2 years ago today – 19/11/2013 – Surprises

I couldn’t believe that when Adam came home at lunch time yesterday he picked up a letter that had arrived during the morning. I knew from the envelope that it was from the hospital, something…..

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