# What Recovery Means to Me



## Susan Purry (Nov 6, 2001)

I was wondering what our different ideas of recovery are. Whether recovery means returning to the sort of life and sort of health pre-Fibromyalgia or CFS. Whether we want to return to that life. Whether recovery means totaly recovery, or being well enough to do most of what we want (working, studying, socialising, bringing up a family, having relationships). What does recovery mean to you? Here is an article: *What Recovery Means to MeBy JoWynn Johns* from: http://cfidsselfhelp.org/artcl_success_jwj2.htm Some excerpts:


> quote:If recovery means returning to the way of life I had before CFS, I have not recovered. But in other and to me equally significant ways, I have recovered...always hoping that I could return to a fully active, productive life. But gradually my objectives changed. After feeling miserable for such a long time, I decided my goal should be just to feel better. Gradually, I came to accept the idea that perhaps I never could go back to my old life. I began to let go of my goal of recovery as I had understood it, and to replace it with the idea of restoring quality of life through building a different kind of life than the one I had known before CFS...I didnï¿½t give up hope. I didnï¿½t resign myself to a life of suffering. I believed that I could find a way to live happily and relatively comfortably, and that is what I redirected my efforts toward discovering...Though I am living a limited life as compared with my pre-CFS life, CFS no longer controls me. I am controlling my CFS.... While it is not the life I once had, I have recovered a satisfying life, a 100% enjoyable life. The word "recovery" means to regain or restore, and I have recovered a high quality of life...By giving up the need to have what I used to have, by giving up the idea of recovery as return to a past way of living, I have created a good life. This is my recovery.


I found that article very interesting.


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## Nikki (Jul 11, 2000)

Susan and other sufferers,I wish i could understand fully what it is that you through. I can't imagine what it must be like to sufferf rom CFS. I stuggle enough with general tiredness related to my IBS.I read this article and i liked it a lot. In some ways this can relate to IBS also. I sometimes with it could be possible to go back to life before IBS, because like CFS (though not in the same way) it is also very restrictive. You guys are all so strong. I don't know how you manage.I have a lot of respect for you.((((Susan))))


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## M&M (Jan 20, 2002)

Susan, Thanks for posting that article, I really enjoyed it. I am guilty of attributing "recovery" to a "return to life pre-CFS". And I am working on realizing how self defeating and incorrect that is. I think recovery should have more to do with "controlling your CFS, not letting your CFS control you" - as the author mentioned in the article. I also think that maintaining a positive attitude is an important part of recovery. I look forward to reading other posts on this thread, and will gladly accept a hug from Spliff, and give one back (((Spliff))). And, another hug to my fellow CFS/fibro sufferers (((HUGS))) ~Mrs. Mason


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## Susan Purry (Nov 6, 2001)

Spliff, you're right, that article could apply to most chronic illnesses. So could the other thread I posted about different stages of illness - did you read that one?


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## Nikki (Jul 11, 2000)

Not yet, will do







read article and thought it was very good. So true as well. I will have to give my friend a kick toget her to come here.Thanks again suse.


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## weener (Aug 15, 2000)

Thank you Susan for the wonderful article. The writer of this article said it perfectly. Personally, I realize that I will probably never be the same as I was 16 years ago, but I have accepted to some degree that I must live the best way I can. One of the most difficult things for me to do is "live in my envelope". When I have a good day, I tend to overdo it. For me "recovery" would mean going back to my life before fm (before the fatigue, pain & various symptoms). I guess I feel as though I haven't recovered, but I've "accepted" the challenges of fm. After 16 years, I realize what is needed to make me feel better and it was many of things the author wrote about. Compared to 16 years ago (when I spent 20 hours a day in bed) I guess I have made a somewhat recovery. I take one day at a time and find joy in the simplest things in life. I love listening to the birds in the morning and looking at the sky. Illness has changed my prospective on life.


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## squrts (Aug 14, 2000)

i never had a life before fm,i always was different and always have suffered.some peace of mind would go a long way,i might call that recovery.


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## Susan Purry (Nov 6, 2001)

Denny, I think Peace of Mind (which may mean different things to different people) would be a great marker of 'recovery'. 'Recovery' to me means getting into the sort of remission I was in inbetween the last 2 remissions of M.E/CFS, when I was about 80% recovered. I was well enough to study about three-quarters time, see friends a couple of times a week, go on holiday even, maybe do some light exercise once a week. I could contemplate going into part-time work at least, maybe even full-time in a non-physically demanding job. I'd love to be that well again, even though at that level I still couldn't do all the things my friends were doing - but I had enough energy to do most of what I enjoyed and needed to do. That's what recovery is to me. I think I have accepted that I will never be just like my healthy friends, that I'll always have a degree of CFS. Now, I'd settle for any improvement whatsoever, and be happy with that. But that wouldn't be recovery for me. Maybe what I think is important for me, isn't recovery, but acceptance of the illness, accommodating my life and expectations to the illness, and putting meaning and value into life despite the CFS. Enjoying myself despite of things!Keep positive people!


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## Guest (Jun 23, 2002)

Great article, Susan. I haven't set long term goals for ages. Not realistic for me. I would say I plan more than anything. CFS requires alot of planning! Being sure there has been enough rest before an event. Scheduling your day so you CAN HAVE A DAY! So on and so forth....... When I gave up trying to fight my illness, my illness quit fighting me. I do believe that we can control our CFS, but there are those times that we loose, but we can't give in. When I hear people say they have "recovered" from CFS it makes me angry. I think it gives the impression that CFS can be "cured", and it can't. No matter how good you end up feeling and the activity level goes way up to allow full time work etc, there ARE STILL BOUNDARIES. I have heard so many stories of "recovery" only to be told later that those same people rebounded and ended up in worse shape than ever before, they pushed way over the limit and paid dearly for it. CFS has taught me to appreciate the little things in life, like just looking forward to reading a book, watching a beautiful sunset or just spending a little time with a friend. Wow! What a ramble







Anyway, with the right attitude we can find tremendous amounts of joy in our lives....is it recovery? I prefer to think of it as serenity. DeeDee


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## Guest (Jun 23, 2002)

What a wonderful article! Thank you again, Susan. What does recovery mean to me?It means many different things. It means being able to get up from a sitting position and not feel as if my legs are going to crumble underneath me in pain. It means being able to get through an entire day without feeling as if I need to collapse or without having to take a nap as soon as I get home from work.It means being able to work without feeling as if I need to fall asleep on my desk.It means being able to take a walk with my husband in the evening and not feel as if my hips are going to pop out of their joints in pain with every step. It means being able to stretch during dance technique without groaning in pain and breathing heavily (don't want anyone to get the wrong idea there....







)It means being able to stand through an hour on risers during a choir performance without having to sit on the riser.It means being able to get up in the morning and actually feel rested instead of irritable, tired and in pain.One of these days I may not be able to work anymore so I need to be thinking about what I will do.The only thing that keeps me going is my own stubborness, I think ... ? .... and the fact that if I give in..... nobody likes a whiner.I keep dancing because the day I can't dance... will be the day I start teaching it....














(and my technique is really bad..... )


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## squrts (Aug 14, 2000)

ok susan.we must have been having alot of gloomy weather that day.gloomy weather and depression dont go together at all.and even though im depressed today i can carry on with sunshine and my garden.positivity will be the word for me this summer,thanks.







recovery to me means having sex without getting pooped out half way through.it means being able to get most the weeds out of my garden.it means going to all the family gatherings,missing out on seaworld today,oh well,maybe i can get to thoses weeds instead.it means supporting my wife as well as she supports me!


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## squrts (Aug 14, 2000)

funny thing,i feel a little better after writing that post


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## squrts (Aug 14, 2000)

is the sex thing a misunderstanding of the question?well,i think i got it mostly right.


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## Susan Purry (Nov 6, 2001)

Whatever recovery is to you Denny, *is* recovery. If you see what I mean!


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