Hi Everyone!
I got up yesterday morning feeling a little better and with some energy to do a couple of things. It didn't last though. By 2pm I was so tired. It's almost as if something just suddenly sucked the life out of me! I thought the bit of energy was great and that I can just ignore the pain for a while. Unfortunately that theory went down the drain.
I'm almost scared to feel good, or at least to say I feel good. I could get up feeling well and the next moment I'm flat on my back! Think I would rather not say anything at all. If you tell people you feel good in the morning they sort of expect you to feel the same way by the afternoon or even the next day. That's the way it is supposed to be with 'normal' people. Even though I would like to see myself as a very 'normal' person, and someone who can do anything, I have to come to the conclusion that I am 'normal' no more...
Yes, I said it. There is nothing 'normal' about me anymore. I had to make peace with the fact that I can't do what I used to do. The problem is that there are so many can't do's and so little can do's. I have no more control over the way I feel physically. It sucks! It sucks in a big way! I just hate being out of control. Where I used to tell my body what to do, now my body tells me what to do! That alone freaks me out!
Having an invisible illness is really so difficult. I don't think that the 'normal' people can really understand what it is like to have fibromyalgia. I sometimes don't understand it myself. How can I possibly feel so ill but look so well? (Other than the major black rings under my eyes!) Surely there must be something, some test, that can prove to everyone how I feel! I know I sound a bit silly, but if I had something on the outside that could tell people who I see exactly how I feel and what I have, it would really help.
It really is a pity that fibromyalgia is such an unknown disease! At the moment I am losing hope. Know I shouldn't, but I just don't know what to do anymore. The medication I'm taking is not working and everyone is telling me things like: if you take this supplement you will definitely feel better, then the next one comes with their miracle cure for tiredness. Now I don't know what to do. I can't try everything as I don't have the money. If I don't try it then I might miss out on something that could make me feel better. In the back of my mind my head is telling me that there is no cure, because if there was then all of us writing these blogs, looking for answers, would have known about it!
I will keep looking for answers as I'm not ready at this stage to give up completely. Surely someone will find a cure, and help us all. Until then I will hang on to the little bit of life in me and give in to my body's demands!
Happy blogging!
It's a process of acceptance and figuring it out over time. For me, it was harder to keep chasing the "miracle cure" than it is to carry on with how I am.
ReplyDeleteThere are lots of people who have a difficult time accepting that this is their new normal. It's different for everyone, but just be gentle with yourself and mindful of your expectations. I call it expectation management- if you don't adjust them you will be in a perpetual state of angst.
Just do what you can when you can. That's all.
We all walk this path together, just give yourself permission to adjust.