Tuesday, July 27, 2010

CFS likes to Fool You

So my body said April Fool's again. You know those few minutes or even hours (last night in my case) where you think, wow, I actually feel a little well, not quite as tired, not quite as much pain, maybe just maybe and then...................HELLO it smacks you in the face to remind you it hasn't gone anywhere the next morning. You gotta love an illness with a sense of humor.

This is like a bad relationship, taking from you, pulling from you and then giving you "just enough" to hold on and have some hope - to yank it away again.

I should be used to it I suppose, IC acts in the same manner. However, it is different. The pain with IC is horrible, no doubt about it. But CFS (and maybe FM - I still can't truly tell what is what in my body yet) robs so much more. Your energy is so much more important to run your body then you ever could have known. You are reminded daily how hard it is to do something as easy as getting dressed. A shower? What a joke, that's reserved for days that you don't have much else to do at all. Waking up, who knew getting out of bed could require more energy then weeding a flower bed (not like I'm doing that anymore either - LOL).

I understand why it's so hard for our family and friends to understand, how could they? How can you possibly explain how much energy it takes to put on a bra (sorry guys), or to take a shower, or to fix a sandwich. There are no words. Even the "flu" speech doesn't accurately cover it.

In other news, I had a neighbor call yesterday and ask if I could have Lyme disease. I tried to explain that it had been mentioned quite often to me but never by a doctor and I honestly don't know why. Of course, I have mentioned and was told by the "infectious disease jerk" that I definately did not have Lyme. Basis for that definate opinion - no frigging clue.


  1. Hi Dawn, I've had CFS for 20 years and was diagnosed with FM 7 years ago, IC 7 years ago. Even after being sick with CFS for 20 years, when I go through a spell where I feel really well and then I go back into a flare I feel like I'm a first time sicky all over again. You never get used to that awful feeling no matter how long you have been sick, unfortunately. You do learn how to cope with it better but it is always hard. Best of luck to you.

  2. Thanks for taking the time to comment Sandy! I'm so sorry you have suffered with all of these for so long - I read your posts often and always appreciate your "experience" and honesty.

    First time sicky is a perfect phrase - thanks again!

  3. I completely understand what you mean - I can begin to feel just minutely better and then a tiny bit more and it's so easy to think I'm coming out of this bad spell but usually less than a day later I'm lying in bed wishing I was dead.

    Big hugs and hope it stops jerking you around (well, we can still hope can't we?)

  4. The ups and downs and not knowing from moment to moment if you're "well" enough to do stuff is the hardest part of this illness for me. Thanks for stopping by my blog....I'm now a "follower" of yours :)