Staying upright

Just before I woke from my afternoon nap, strangely I remember dreaming, I know we all dream but I don’t normally remember them. I was back at work, in the office and feeling so ill that I was about to take time off, nothing odd you might think in that, well there is, I never took one single day off work unless I was physically in hospital, for the whole 13 years I worked for my last company. When I woke, guess what I felt terrible, but that is actually how I have been feeling for the last few days, I guess my brain was screaming at me in the only way it could to tell me to stop and just accept things aren’t as good as they could be. When you are ill and live your life on a graduated scale that starts at where most would say things are bad and just gets worse, it is hard to accept that there are still spells that come along when your body is screaming at you and you actually do have to listen. It is so easy to just keep going as you still have this stupid voice in your head that sarcastically say “well what is the worst thing that can happen, I could make myself ill”. I knew yesterday morning when I woke up so tired that walking was an interesting experience, that I had already been pushing myself beyond where I should have slowed down days ago. Having spent nearly all of my life working on and doing what everyone else did, because no one could tell me what was wrong, means that I really don’t find it easy to slow down, I still have that sarcastic voice mocking me over and over and telling me to just get on with it, as what other real choice is there. These days, well I don’t really do that much in comparison to the past but like most things it is all relevant, I can still do too much, just as I used to. Too much these days is just spending too long writing, or trying to come up with new tweets, in the past it might have been coming home from work and starting to spring clean the kitchen, as I said all relevant. Learning, remembering and actually doing what you should, never gets any easier, in fact, I would say it gets harder as I already feel somewhat pathetic over how little I can actually do these days.

Your brain never quite gets used to the changes you are forced to make to your everyday life, regardless of how slowly those changes happen, they are always too fast. The only gauge you have is to pay attention to just how tired you are feeling and how intense the muscle fatigue is, yes that gnawing pain does have a purpose other than making us miserable, it is a measure that you have to listen to as if you don’t slow down or stop, trust me it will find a way of making you. This morning there isn’t a single part of me that isn’t complaining, so today and for the next few days, I am going to have to accept that I need to slow down and I need to do what I haven’t been for the last week or so, making sure that I go to bed at the right time, those 5 to 15 minute extensions that have been happening, have to stop as does clipping a few minutes here or there off my afternoon nap. I know it sounds like such a tiny thing, it is only a few minutes, what harm can they really do, but to me they make a world of difference. Yes, life does get petty and picky but that is just the way PRMS has made it and I can’t full around with it any longer, it always wins.

When Adam is at home there is always a cable that runs from under the settee in front of my desk to the coffee table, it is the LAN for his laptop, no I won’t have WIFI, but it is something that Adam is paranoid about and he is constantly reminding me that it is there, just in case I trip over it. It isn’t actually a true trip danger, as the cable is meters in length and even when I do catch my foot in it there isn’t the slightest chance that it could cause me to fall as the cable moves freely with me, but this doesn’t stop him from reminding me every time I stand up that it is there. Yesterday despite all of that I caught my foot in it and as it does it simply settled on my ankle and I stopped to release it, without any damage to myself or anything in the room, as I said no real trip hazard. It wasn’t until I was in the kitchen that I realized that although I have explained it isn’t a real danger, I hadn’t explained why him constantly telling me it is there is totally irrelevant to everything. As mad as it sound, I have developed the ability to fall over, trip over or into, things that I not only know are there but I can actually see, it seems to have nothing to do with what so ever my brain is aware of, if my body or my brain are going to do something stupid, they will. I discovered it a few years ago when I cut myself on something that I was looking at, aware of and even mentally trying not to harm myself on, then I did. In that case, it was a sudden spasm in my hand that caused the problem and to be fair, most accidents I have are due more to my body than my brain, although occasionally it does feel like some kind of conspiracy. On the odd occasion that I have caught my foot on the cable it has been because my foot has dropped, something it does a lot, it’s almost as though the muscles give up and can’t hold it clear of the floor as it should, at it’s worst I have heard and felt it drag across the floor which when you brain has given the correct message, comes as a bit of a shock. I will admit there are occasions that I forget things, I’m not stupid enough to trust my brain, but I knew the cable was there yesterday, I hadn’t forgotten.

It’s hard to accept that both your body and brain are out to get you, that if one gets it right, the other will do it’s damnedest to get it wrong, in truth, it’s surprising more things don’t go wrong. I know without a doubt that living in a flat that is overfilled with furniture actually works to my advantage on that one. Big open spaces are my danger areas, the reason you will see many people with any form of MS walking close to walls, we love walls, they stop us from falling, as does furniture you can hold onto or fall into. Combine pure balance, bad memory, poor eyesight and spasms and you have the perfect recipe for things going wrong, probably the reason my body discovered fatigue as it keeps me sat on my backside and safe. Joking aside, I have managed to be housebound for 8 years without breaking a single bone or cutting myself that badly that I have needed medical attention, in my book, that pretty good odds when it comes to the future even if that future is only ever counted as today.

 

Please read my blog from 2 years ago today – 1/03/13 – Admissions

I had no excuse last night but I once again retreated to my horizontal heaven at about 8:20, Adam was in the kitchen washing the glasses that had piled up, I won’t put them in the dishwasher as it seems to destroy them regardless what they claim on the packet. I knew he would be there for about another half hour, so I took…..

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