Monday, July 12, 2010
This is better, but that is worse ....
It’s kind of the middle of the year so I thought I would just review how I am going in a general way. Firstly I can say that in the last 6 months my symptoms have been constantly changing. The thing that was initially my biggest problem was malaise, I’d wake up with it and go to bed with it. Every muscle in my body was just sore and icky. Now the malaise is really only present the day after I have done something. It doesn’t take much to trigger it off, if I do some laundry, wash up dishes and walk to the mail box all on the same day then I will usually have malaise the next day. I have seen a gradual but steady decrease in brain fog. I used to seem to just have it at a moderate level all day whereas now I only get it when my senses are assaulted, such as if I have a visitor who bombards me with questions etc. My level of muscle weakness I don’t think has really altered, I am pretty weak most of the time. Dizzyness/Orthostatic Intolerance has become my biggest issue. Initially I had random dizziness but I didn’t think it was major but now every time I stand up I feel very dizzy until I sit back down. I also get dizzy if I sit upright for more than 10-15 minutes, so I need to lounge with my feet up as much as possible. This issue makes it really hard to leave the house because being in a car means I can’t really get my feet up and being in a wheel chair is the same. Flu like symptoms were also something major for me 6 months ago but I only seem to have this on occasional days now. My sleep has generally improved but I do still get the odd night of scary night terrors, night sweats etc. My sensitivity to noise, light and movement is much much worse now. I am even finding that watching TV can be a problem. Sometime if the image on the TV moves suddenly I get instant motion sickness, it’s really bizarre! My body temperature seems to be regulating itself a little better now. It is still low but it’s consistent, previously it went from being very low to very high each day … it was just all over the place. My mood is still generally good, I have down days just like everyone else but it doesn’t happen all that often.
The things that have become worse I am assuming are just following the path of the disease and the things that are better I believe are mostly due to the medications I am using. I saw my Dr today and he has given me a prescription to get some Atenolol which is a beta blocker and when used in low dose it is supposed to help with the Orthostatic Intolerance. So fingers crossed. If I can get that under control I will be much more functional I think.
So I guess all in all I am doing OK. The big picture says I have not become worse over the last 6 months, but not significantly better either, just different. Different is OK! I think I am happy to just see changes occurring.
I’d be interested to know if other peoples symptoms wax and wane like mine have??