March 8, 2005
Chronic Fatigue Syndrome is Du-u-ull
Oh how I hate having a chronic condition. Yes, it’s great because it’s not going to kill me, but I’m never going to be free of it. Or at least that is how it feels. When I was diagnosed about five years ago my neurologist said that in about two years I would be totally clear and never have to worry about it again. Oh how I wish that were the case.
Yesterday when I got into work I felt awful. I felt so down, I just wanted to go back to bed and stay there and wake up in the summer. It has been suggested to me on a number of occasions that hibernating would be an excellent plan. Slowly the day improved and I felt the black cloud over my head receded.
My friend R invited me to a party on Saturday night. I really want to go, but at the moment I find myself really tired at weekends. It seems that I can either go to work and rest all weekend, or go to parties at the weekend and not go to work. Much as the latter is preferable, I have to be practical. I want to go to the party. I feel like Cinderella. Part of me wants to take the risk and go, but part of me can see me on Monday morning dragging myself out of bed feeling like death.
Today I was feeling quite a lot better than yesterday thankfully. After lunch I was sent out on a job on the other side of my small rural town. What follows is the conversation I had:
T: So, you can go on your bike.
Me: I’ll walk
T: It’s too far to walk, you need to cycle.
(I actually considered lying at this point and saying my bike is broken, but plumped for honesty)
Me: I can’t cycle at the moment, my energy levels aren’t good enough yet.
T: (displays puzzled look) ok
Me: I’m quite happy to walk, I’m quite capable of walking, I just can’t cycle at the moment.
No one seems to get the fact that it doesn’t just get better and go away. It’s always there, hovering over me like the afore mentioned cloud. In everything I do I have to consider how I am feeling emotionally and physically. Sometimes it’s almost non-existent, but sometimes it takes over completely and I have to surrender. Coping with CFS on a day to day basis is something that at times I barely notice. But if I dissect my life, I can see that every single day there are small things I do to maintain my health. It’s such hard work.
Now, after that rant, I’m going to slump on the sofa and watch TV. I have a headache. Typical!
Posted by Sleepy Sal on March 8, 2005 11:47 AM