relapse

[bright]

Hi everyone

I'm new and I have been reading your messages, alot of you sound worse than me, so I hope I don't sound like a spoilt brat wanting to talk about relapses.

I was diagnosed with M.E./CFS 3 years ago and haven't been able to work.  I am a female, 27 years old, from New Zealand.

However in 2003, I was able to part time study to become a primary school teacher.  This year I have relapsed and haven't been able to go into college at all.  I have servere muscle pain, headaches and bad fatigue.

I would love to get to know you all, please write me your stories, especially any relapse details e.g. the disappointment, pushing yourself too hard, all rest vs. no rest vs. forced rest!, any light at the end of the tunnel...

Thanks,

brightbundle.

[littlesue]

Hi Brightbundle (I like your name!)

I hate to hear that you had a relapse after doing so well. Over the course of the two years since I've been diagnosed with CFS, I have had numerous relapses. I went from working Full-time to Part-time, then freelance....then I started missing even the freelance work due to excessive fatigue. It seems that I could work for about 2 weeks at a time and then my body just crashed for another two weeks. About 4 months ago, I decided to stop working alltogether to see if I could get better. I believed the stress from my job had a connection to my fatigue. (Not to mention the fact that my co-workers thought I was crazy....you know, one day I was fine, and the next day I would call in sick. It was embarrassing.) Leaving my job definitely took some of the pressure off and I've been more focused on finding real solutions. Anyway, I believe that any kind of stress is detrimental to those of us with CFS/FM. Af far as rest goes, my philosophy is: If you feel like doing something - try it! If your body is telling you to rest - rest... It may sound simplistic, but for me it helps. When I'm really feeling exhausted I don't push myself physically, I try to take my mind off of things by reading a good book or watching a funny movie. For me, this type of rest is probably more helpful than just laying in bed.

One of my current fears is that I will get back to work again and have another relapse? Do you have this fear as well?

Hope this helps.

Sue

ps. Thanks for replying to my message.

[brynn]

Hi bright and sue, and anyone else interested,

I have a complicated medical situation, where CFS is just a small part of the picture.  Because of limitations imposed by other symptoms, I can't push myself hard enough to cause a relapse of fatigue.  But chronic pain being my worst symptom, I well know the disappointment and psychological impact of a relapse of pain.  It's absolutely devastating, and the more I have improved since the last relapse, the less I can tolerate it.  But the one thing that is as certain as the occurrence of future relapses, is that I will pull out of this one.

After a certain point, in the progression of my combined illnesses, maybe a few years into it, I found I could no longer bear the disappointment of a relapse.  Of course, I felt that way, to a certain extent, (and still feel) with each relapse.  But there came a point where I lost the will to pursue the hopes and dreams, which I had so carefully maintained, since becoming ill.  At this point, it was not so much the disappointment, or the loss, which is hard enough to deal with by itself, with each relapse; but I could not continue to renew my hopes and dreams, did not have the will to renew them, as I recovered from each relapse.

If I had my own family, or husband, or even a close family of friends; or the beginnings of a career or project that I felt passionate about, like a mission in life or something; I think I could still manage to hold out hope and renew it after each relapse.  But sadly, tragically, for the kind of effort it was taking to survive, I had very little in the way of hopes and dreams, to anticipate or even to work towards, for which making the effort was worth. :-(

Suicidal?  Oh yes, I can't say for how long it was a daily thought.  Neither can I say why it never happened...  But fortunately, recently, I've made an important transformation.  I went through a period of grieving for the hopes and dreams that I lost.  In the middle of that, I realized that I could still have hopes and dreams, if I kind of "adjusted" them.  So I set out to ponder what kind of hopes and dreams would be worthy of the effort it takes me to survive. 

It has been both surprising, and surprisingly rewarding!  And I'll leave it at that.  I'm still in the process of "adjusting", and learning what reasonable hopes and dreams are worth living through the pain.

I realize this message might be hard to understand, but I've reread it many times, and can't come up with any other words to express what I want to say about what relapses are to me.  So, from my heart to the internet....here it is!