Just a step

I am sure that right now in the head offices of Twitter there are some very smug programmers walking around patting themselves on the back, personally, I change that to a rather large knife in their back. Once again they have changed things without great thought! Try clicking on a tiny little number when your hand shakes and jumps all the time, hitting the background takes you away from the page and you have to reload and scroll forever to get back to where you were!! Arghhhh I have taken a whole hour longer just because of their bright idea to get to this point today, but it’s done, all I can hope for is that just like has happened in the past, they will keep tweaking it over the next few days and weeks. Rant over!

Despite my best attempts at bring down my cigarettes and switching more the E-cig has slipped somewhat in the last week or so, I know the reason for it and it is down once more to my MS. With all the problems that I am having typing with my stuttering fingers, along with the sudden uplift in numbers I am dealing with on twitter, I am always running out of time at the minute. I know that on the surface won’t make sense, but a cigarette is lighter than the E version and I can sit happily puffing on my real cig while still working, I can’t with the E one, I have to stop and it take up yet more time. It maybe just makes the difference of a few minutes per hour, but those few minutes are becoming important and now also expensive. I guess I am just going to have to put up with losing time and now that I know why I am doing it, I have documented it, I just have to change it. It’s strange how just telling someone else, takes the excuse away, it looks like a case of the E-cig back in my life, big style.

I never thought that I would find the lack of time the biggest issue I have with my health, but it is really the hardest thing to manage at the moment. It is as though my health is finding every way it can to stop me doing things, not so much physically, but because everything is taking me longer and longer. It doesn’t matter if it is just walking around the house or working on my PC everything is getting slower and slower, just as I have reached a point where if anything I need more time not less. I have only 11 hours each day in which to do everything I need to, including relaxing, with everything from walking to fetch a glass of coke, to even changing channel on the TV happing at just that slightly slower pace, even though I am doing the same every day as I did the day before, it is just all taking so much longer, life is moving into slow motion. More and more I am feeling as though I am become old before my time, as I am sure that is how it would appear to a stranger. If you were here in my home shadowing my for a day, I know without a doubt you would become frustrated by trying to do things at my pace, I get frustrated with it and I have lived through all the changes to get to this point.

Even thought I avoid mirrors, I know for a fact that I now very rarely for some reason walk in a truly upright position. I am not sure why but I am slowly hunching forward, I understand why I shuffle and walk with a somewhat strange gait, all perfectly understandable because of the tightening of muscles and the constant pain, but hunching as well, has taken a lot more thought to work out. I have done my usual internet scan to see if there is a connection, but I can find nothing. Then it struck me, it seems like almost every day now that I have a step up of some sort of pain or some symptom that is draining on me. Pain is far more than just a sensation, it drains you in a way that unless you have lived with it is really hard to understand. It eats away at your energy, just as it eats away at you ability to do things, I know it is part of the reason I am slowing down, as when you have pain, even those few steps from one side of the room to the other, you find yourself guarding, being unconsciously careful about every movement. With the pain and discomfort I have around my diaphragm I guess that I am leaning forward in the hope that I don’t make it worse, I’m not doing it on purpose, but out of fear. It doesn’t matter whether I am sitting, lying down or standing, I am always aware of the pain and always aware that I could make it worse because I have done so in the past. It is one of the reasons why I said I feel as though I have aged before my time, as it reminds me very much of the way that someone in their 80’s not their 50’s act. At least, that is one really great thing about being housebound, no one can see me.

If I had a wish right now, well it would be to just get back the spring in my step, I don’t expect to ever move like I did, or to be pain free, but I do miss having just that little bit of freedom to at least take a few steps which showed I am alive, not hinting strongly that I am in fact long past my best.

 

Please read my blog from 2 years ago today – 08/04/12 – A problem, a moan and a fact

I am generally very good at remembering to take my medicines at the time I am supposed to, well, to be honest, my body will remind me to quite forcefully if I should forget. There is one exception and I am supposed to take it in the morning every second day, it’s part of the treatment for my now dysfunctional bowel. I think even people with good memories would have a problem with this one, but with my brain, there isn’t a chance that I will manage. I have loads of so-called coping strategies that I have tried ever since my memory started to live a life of its own, but none are full proof and all are forgettable. There is one big problem with every system that the designers seem to have forgotten themselves and here it is. If you are busy at the time the…..

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