I feel I should make some important points
- The book is almost 25 years old, and there's been a lot of research into CFS and greater understanding of the problem in that time. [much of it by Trudie C alder herself] so some of her comments are possibly outdated.
- Her ideas about CBT [cognitive behaviour therapy] are not universally accepted - in fact Richard had noted this in the margin
- Online reviews vary between "This book has been my saviour" to "Despite my lack of energy, I still managed to hurl this awful book across the room"
I am ambivalent. Richard kindly lent it because he had found some parts helpful [he didn't specify which ] and I would agree with that. I am grateful for his thoughtfulness, and appreciated the opportunity to read something which had short, manageable chapters, and lots of practical tips.
I recognise that my situation is not extreme, I'm not bed-bound, or in pain. Many CFS sufferers cannot even lift their arm and brush their hair. I imagine folk like that might resent the chatty "come on, you can beat this" approach in the book.
I did find the passages about pacing myself, and not feeling guilt over unfinished tasks to be useful - but some of the ideas about sleep patterns didn't work at all for me.
So whilst I am happy to identify the book, please don't take that as a *****star recommendation. It may not be right at all - or it may be just what you need.
If you think you are suffering with any degree of CFS, do see your GP. And do not give up hope. And if someone you love is struggling with this, please be patient, don't expect Instant recovery. Help them to say no to things.
As I continue to tell people, the love of friends and family is so important. Kind comments and patience and understanding are wonderful. Other people I know and love are much sicker than I am right now. They, and their carers, are the ones who need most support.
Apparently, it takes a longer time to recover from fatigue than one anticipates. It happened to me, after the cancer treatments. Even now, although it's been several years after the treatments ended, I still find my energy levels are way below what they used to be. I still tire easily. According to my doctors, regular exercise will help to build up stamina; 30 minutes of walking a day, is what they recommend.
ReplyDeleteThank you Bless - it is good to read your blog and know you are slowly regaining strength. I know you too are surrounded by loving friends and family, which helps so much.
DeleteI have found that learning to say NO when I need to and pacing myself has made the biggest difference in being able to not just cope but to live pretty much as I want.
ReplyDeleteSetting boundaries - whether it's work, volunteering, housework or even fun things with friends - is critical.
While I understand what you say about the chatty"come on you can do this" attitude I also believe that in the beginning you do have to force yourself a wee bit. When my rheumatologist set out a walking program for me I thought she was crazy - I could barely get out of bed without a supreme effort - but she was right. Start very slowly - but do something every day. If you don't it only gets worse. Everyone needs to find the balance that works for them but I truly believe it is a matter of "use it or lose it". Please take care of yourself.
"Start slow, increase things gradually" does seem to be the way forward. I am glad to read that this is working for you
DeleteI now have antiphospholipid syndrome, pernicious anaemia and Parkinson's Disease. CFS can be a symptom of all these conditions and I am exhausted much of the time. It is difficult to accept. But Michael J Fox points out that acceptance is not resignation but understanding it is what it is and that there has got to be a way through it. As with most things in life, people can not truly understand unless they have experienced it themselves. I have found strategies which help me physically but also which have given me peace of mind to accept and move forward. I think books, medical advice etc can be both help and hindrance. We need to keep an open mind and try all things possible and be patient when offered trite "you can do this" type comments!I wish you well and a speedy recovery. x
ReplyDeleteSo sorry to read of your health issues, much more serious than mine. The final sentence of your helpful comments is great. It sums up a wise attitude - have an open mind, be prepared to try things - and be patient with trite comments!
DeleteI may have some serious "medical labels" but chronic fatigue is challenging no matter why you have it 😊 I understand how poorly you are feeling on a bad day. Rest up and say no when you have to, kick your heels up and have fun whenever you can. x
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