Thursday, August 5, 2010
These 4 Walls
My thoughts are a bit scattered today, most days in fact hahaha!
Firstly I went and saw the POTS specialist a few days ago. He didn’t really have a lot to ad to what I already knew and what my regular Dr had said. He did confirm the diagnosis without making me do the icky tilt table test which is good, I was dreading the thought of having to do that. For anyone who doesn’t know about it they basically strap you to a table and tilt it upright as though you are standing. They leave you there until either you pass out or you reach 45 minutes. Either outcome sounds awful for someone with CFS. Anyway back to the point ….. the specialist basically said I should continue with the Saline infusions if that is helping (it is helping), I could also try FlorineF with salt and water which would also work well with the Saline infusions. If that doesn’t help then I could try drugs like Mitodrine, which helps some people but is expensive here in Australia. At this point in time I have decided to just stick with the Saline for a few more weeks and then re-evaluate. I am feeling significantly better than I did in my previous post.
Something else I am noticing is a real increase in weakness in my legs. I am not sure if it’s just because of the CFS or if it is genuine muscle weakness because I am spending so much time laying down that my muscles are wasting. I am tempted to try doing some kind of minor leg exercise to strengthen the muscles but I am really scared of causing another crash.
What does everyone else think about this??
In the same vein as the leg situation I think my brain and general zest for life seem to be diminishing. Again I wonder if it is because of lack of stimulation or if it is directly due to the illness? I do feel like I need to find a way to get out of my 4 walls more often. It’s difficult because many days I am just to ill and on the days when I think I might be able to manage it I am either just to scared in case the POTS stuff happens and I get dizzy or it just seems to difficult. To get out I need help from someone else and that means asking someone to be my babysitter. Mmmmmm ….. what to do, what to do??
I am also feeling very frustrated at the moment. I have a huge list of projects that I want to work on but I can’t seem to gather myself to start anything. By the time I have a shower and get breakfast I am pretty much done until lunchtime and then standing to make lunch exhausts me and so the day goes on ….. AAAAAHHHHHH ……. Frustrating, hahahahah!