I think I have broken through the worst of this phase of uncontrolled muscle tightening, I sat last night on the settee without constantly having to put my arms into stupid positions in a hope of stretching the muscle to the point they would give in. It was totally motionless, I still did it occasionally but that was the big thing it was occasional not constant. So far the morning hasn’t been too bad other than my right shoulder and underarm, they still are driving my fractionally mad, but I am not complaining, after the last few days, I have nothing to complain about. Pushing my dose of Gabapentin seems to have done the trick, I am going to keep it at the higher level today and maybe tomorrow then see what happens, it doesn’t scare me to bring the dose down as I have the answer, so I can test to my hearts content. Even though things are that bit better I am no longer trying to fool myself that things aren’t getting worse and that I am not in the midst of a flare. I have come to the conclusion that I will never just accept what is happening and that to the day I die, I will still be questioning what is happening to me without the slightest chance of doing what would be logical, to accept it and treat it as such.
I was pleased today to find in the comments to my blog a person who made me feel just that little less alone in all of this. I get so much support that is beyond words when it comes to making me feel better and giving me strength to go on, but there at times and topics where I am screaming inside, “Someone out there must know what I am talking about, someone has to be going through this too”, but there is no response, no feedback and I continue alone. Today though at last one other person on this planet said they to find themselves with seeping sores that they don’t know are there because they can’t feel them, that they just appear where skin touches skin and dealing with them is hard and horrid. Thank you and thank you again! I know I make things worse for myself when it come to sores like that as I truly don’t want to ask for the help I need from Adam when it comes to getting dry after a shower. Adam hasn’t seen me naked now for about 9 years and I am so embarrassed by the way my body is, that I don’t want him to see me, I have instead worked on ways of making sure I am as dry as I can be. By the time I have managed to undress and wash myself, I am exhausted, drying myself can be some days a truly huge problem. Just now it isn’t too hard as the weather is good and the house is warm, so I simply pat myself down as well as I can and use kitchen towel in the areas I know sores can appear, letting them blot the moisture of me, once as dry as I can get, I then let the air dry the rest of me, before I try to get dressed. I know because he has offered over and over again to help me, that all I would have to do is ask and Adam would be there, but I can’t get past my stupid embarrassment. His help wouldn’t be the full answer, though, just as in the comment, I too have a problem that sweat will build where skin meets skin and that alone can cause the skin to break down, which when you can’t feel it, well is a problem, one I haven’t found the answer to yet.
Just a week ago I was stressing myself out about the visit from the MS Support worker, now I guess with all that has been happening, I have something to talk to him about. On the other hand, though I can’t help wondering just how much of this happened because I was stressed out, one of those questions that I doubt there is a way of actually answering, as who really knows. The more I think about it though I now know that this all started prior the letter but skyrocketed after it. I am thinking of asking them not to write to me in future, but instead to just phone me on the day they are coming that way I don’t have this long time to twist myself into a state, hopefully as they deal with just people with MS they will understand my situation, so why do I think they will find it all very strange, maybe because that is the normal reaction I get from everyone else.
There is one other thing that I have found myself doing more and more, wearing my glasses here at my PC. I had a pair made just for this very use just over a year ago, but when they arrived I didn’t really find them a great help, so they have just sat on my desk doing nothing but gathering dust. I don’t really know what made me reach for them, but I think it was because I was feeling somewhat nauseous, something else I haven’t really suffered from for a long while. I used to find that I couldn’t deal with motion, things like sitting in the taxi and seeing things passing me by, or just sitting in my wheelchair being pushed, was enough to make me feel sick. A couple of weeks ago just moving my cursor or scrolling up and down a page was having the same effect, I had it explained to me while ago and if my memory serves me correctly, it had something to do with the fact that my vision being screwed up in my right eye due to macular degeneration, something they found when doing all the test for my MS. Because of all the pain I have been in recently due to the muscles tightening in my legs, I had played around to find a position at my desk that helped a little, but the downside is that I now see the TV out of the side of my right eye, the TV is giving me motion sickness, add in the what is happening on my PC screen and there is the reason for my nausea. I put my glasses on as although they don’t help with the TV movement, they do sharpen up the PC screen and means I reduce the fuzziness. Unfortunately, they don’t help with the left eye at all, a victim of MS. I can only guess that somewhere in my brain I was working this all out without real conscious thought, reaching for my glasses just happened and I am glad that it did.
Eyesight is something most of us take for granted, I had known for a long time there was something wrong with my right eye but normal eye tests didn’t find the issue. It was the more in depth test at the hospital that showed up the macular degeneration, something most people don’t have to deal with until old age, mine is down to my smoking, something most smokers don’t know can happen and once the damage is done, there is nothing that will fix it or even stop it, it will only get worse. It takes screws up your central vision, by firstly developing blind spots, but it also fuzzes out the rest of it. My peripheral vision is clear but it is unnatural to see that way and as things pass from clear to blind to fuzzed and so on, well it’s the same effect as motion sickness, all without moving an inch. My left eye has taken many hits from my MS, the worst about a year before I last left the house, I woke up one day with the plan of going to work to find I couldn’t see clearly at all, in fact if something was further than 6 inches away it was a total fuzz. I worked from home for two days, both of them with my nose almost touching the screen, convinced at first that it would never return to normal. I was as scared as hell, I really thought that was it, that I was never going to see clearly again, but it slowly returned until it was clear enough for me to return to life. MS can make you blind, it isn’t common but it happens, more common is pain in the eye and the loss I just described, optic neuritis is the inflammation of the optic nerve and it is normal for it to only be one eye at a time. I have been lucky so far for it to always repair itself, but with my MS being progressive, I many not be as lucky again.
Please read my blog from 2 years ago today – 27/06/12 – Teaching the young
Two Rooms Plus Utilities 