Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Does anyone else find that? You have a bit of a remission and when you relapse, it's a struggle to have to let go of it all again. I think this most recent one has been the worst because even though it was not a huge improvement, it lasted quite a long time - several weeks. I was gradually managing to catch up on some of the things that had not been done since I moved into this house 3 years ago - as in properly sorting and putting away things from the move.
It went on long enough for that dreaded spectre, hope, to raise it's head. It might sound odd to refer to hope in such a way. Certainly it is usually viewed as a positive thing, at least in western tradition. In the last few years though, I have learned to appreciate the eastern take on it. Letting go of hope has been a necessary part of coping with what my life has become because of the level of my chronic fatigue.
Then along comes a remission which lasts long enough for me to wonder if this isn't the start of a permanent recovery. Hope rears it's head. I started to flag a bit and eased off, but it wasn't enough. I'm way back down again now, only a step, maybe two, above my worst. Hope has to be quashed, exiled, forgotten and I am struggling to go back to accepting my diminished capacity.
Yet when it comes down to it, I cannot survive without hope. I am just not a fatalistic person, whether by nature or upbringing. If I didn't have that hope that some time in the future I might recover enough to at least care for myself properly, or that a cure (or even just a treatment) might be found, I would have given up long ago.
So at the moment I'm struggling, feeling much worse for the fact that for a while I was a bit better.
We should expect the crashes because we've had too many to count. However ,when we truly believe we are recovering when we're in a remission, we don't expect a crash and don't want another one ever again. It's a bitch of an illness. Feels like a damn curse sometimes. Sorry if I'm sounding negative.
I have just been through the same as you. For several weeks I felt some improvement. I was telling myself and everyone around me that I was definitely recovering. I felt it and I believed it. Of course I never really had one normal energy day, but still there was a noticeable improvement. Enough for me to believe that I was recovering. What happened? I guess a little extra push and a little extra stress and BANG !! I ended up bedridden again. I was sobbing and deeply disappointed.
I never get used to it. I hear you cmiat and I truly feel for you. We do have to hold onto hope and just keep doing our best and remember we are not alone. Love to you. xoxo
I sure know what you mean about 'hope'. It used to torment me. Then several years I gave up on hope. I had tried everything and nothing worked. It was actually more peaceful.
Now I have hope again (with mixed emotions). Finally after years, a doctor listened to me about low oxygen, ordered a sleep study, and guess what??? My oxygen falls a lot when I sleep. I am going to get nighttime oxygen! I am trying to not have too much hope for a positive improvement.
I am also going to see a CFS specialist!!! oh oh oh, be still my heart! I have never been able to get to a specialist before. And my doctors did not believe in CFS. I have been on my own for almost 40 years. Now....... Again I am trying not to get my hopes too high. But maybe.......
This disease so terrible, not only the physical but just as bad is the emotional part. To have hope be frightening, to be part of this curse.