Saturday, March 27, 2010

Feel like Sisyphus? Well guess what, some people do recover!


I had my first meeting with a psychologist the other day. She has been appointed as part of my ‘care team’. I didn’t really get all that much out of it and I’m not sure that I will given the fact that psychologically I am doing pretty good. The interesting thing though was that she herself had suffered from CFS for 6 years and had recovered. I am mentioning this because it struck me that I had never spoken to anyone who had ever recovered. There is all this talk that some people do get better, but where are they??

All the people who blog etc are still unwell and some have been unwell for many many years. Being in touch with the chronically unwell made me forget that people do in fact get better. I guess the thing is that people who do recover no longer have a reason to blog and so they disappear from our view. The concept of recovery almost seemed like a myth to me but my new psychologist was living proof. Oddly enough, I instantly had my guard up and assumed either she had never had CFS severely or else she had been misdiagnosed. I quizzed her and it seems she was very ill, bed ridden for years, unable to even read. So there you go, we shouldn’t lose sight of the fact that we can recover … it really does happen for some people!!!!

Does anyone else know of people who have recovered? It would be cool to share some of that hope :)

P.S. Thats was Sisyphus, not Syphilis .... hahahaha

8 comments:

  1. I know of one person who recovered after 8 years of being housebound, and I have a friend who ebbs and flows with ME - he's had it for the best part of 20 years. But - a couple of years back he managed to cycle to Spain!

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  2. Yep, I know a friend of a friend who had it and is now completely ok. And my Occupational Therapist for ME, she had it too and is fine. I'm sure recovery is possible.

    It would be great to recover and give something back by continuing to blog. But I wonder if one is so grateful and so busy with one's new life that it is almost too hard to do?

    Thanks for helping to keep hope alive today!

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  3. You're right. We do lose sight of the fact that people recovery or the condition subsides sufficiently that you can get on with life. I've had M.E. for over 30 years and had periods where I was O.K. to get on with jobs, courses, social life and other periods where it was a terrible struggle or impossible.

    I know of at least three people who were properly diagnosed, bed bound etc and have recovered. One of them only began to get better after 20+ years last summer and is about to do an 8 mile midnight walk for charity.

    Your post is a good and welcome reminder not to give up hope.

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  4. Great to know! I wonder what they did? I think it's really good that you have a 'care team', and that the psychologist has also had the illness.

    Think of how more rewarding post ME life must be compared to those who have never experienced chronic illness. They must wake up every day and say, ahhhh, no pains, no headache, I can do things today!

    Our first year university classics seminar got a kick out of the myth of the Sisyphus... haha...

    D.

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  5. I appreciate the reminder, too. It's easy for the chronicness of this disease to cloud that view.

    I've heard that CBT is good for helping you identify your limitations so you can pace within them. I imagine it's helpful working through the emotional aspects, too. You'll have to let us know if it's helpful to you. In the states, it's not an automatic part of our treatment, and I'm curious to know if it's worth looking into.

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  6. My sister has had ME since she was 11. She is now 30. She has been very ill at times but also has had times where she has worked (more than) full time and had a social life on top! These days she is only mildly affected, works part-time (when not travelling in australia) and seems relatively stable despite some really stressful times over the last few years. I have been ill with it since 1999 but have never been more than about 50% of what i would call normal. The fact that she is doing so well does give me hope but i also am aware that the course of our illnesses have been very different... so what i am saying is she has got "better" if not 100%, and that certainly does happen, which is a comfort to me and i hope i am wrong in thinking we are so different!

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  7. Lee - Like you, when I hear someone has recovered form CFS, I first wonder whether they were accurately diagnosed!

    It's great to hear all these stories of recovery, but my question in WHY?? What did the trick? What treatments helped? Or was it just random chance?

    By the way, I saw a psychologist for the first 5 years of my illness, and she helped me immensely. Her adult son also has CFS, so she totally understood. She helped me adjust to my new life.

    Thanks for the uplifting stories - let's hope we'll all be there someday!

    Sue

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  8. I *love* to hear stories about people who have recovered. It reminds me that my hope is not futile.

    How did they recover? Why? Which treatments did they agree to? Which medicines did they take? Did they immediately surrender to complete rest? These are questions that I would like to hear the answers to.

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