Most helpful book about M.E./CFS I've ever read

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Hi - I"ve had M.E. for 21 years. Was diagnosed with it after having glandular fever and never fully recovering. Tried going back to work part time but couldn"t manage it so was paid off on ill grounds and am now managing the condition the best I can. I recently found a book on M.E./CFS which is the best book about the subject I've ever read. It isn't just doctors quoting statistics, etc like a lot of other books, it is more like a self help guide written by people who really understand how you feel. I have tried some of the suggestions in the book and think it is helping a bit. The book is called Fighting Fatigue by Sue Pemberton and Catherine Berry. Just wanted to share this hoping that someone else might find it helps them too.

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  • Posted

    Thanks will have a look at it.  l dont know whats going on the last few days, few answering any posts, just masses of new posts from people with problems.  Maybe a lot are having a bad week, my own not great, but rally a bit in evening, anyway will def look at the book, thanks for sharing.
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    • Posted

      Hi -  I'm not great this week either. My husband sprained his ankle last week so ended up trying to more than normal and feel shattered now. Really do recommend this book. It is broken up into small chunks so you can read a bit at a time and has a lot of small tasks you can write down. It makes you question yourself with things like 'how do you rest?' If you just have a lie down to try and rest feeling annoyed that you can't do anything you are not really resting you are wasting energy feeling annoyed. If you lie down and listen to a relaxtion CD instead you are doing something positive and will feel much more rested afterwards. The book has bits like 'the tortoise and the hare' If you rush and try and do everything at once (like me!!) you might not manage to finish the task and will feel exhausted afterwards whereas if you were more like the tortoise and took your time doing a task with small breaks you are more likely to finish it and not feel so tired afterwards even if it takes longer. The book also has an excellent chapter on dealing with others which I never find easy as most people don't really understand about M.E.

       

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    • Posted

      must be a bad week for many, so few on, none of regulars, lve felt more tired and down myself this last few days, and you sound as if you know me, re reading small bits at a time. that about sums up my reading abiiity, from one who used to be able read a lot, with a good book in one night, now my concentration abysmal.  Also right about the bad feeling at falling asleep again, 2 or 3 times today, so annoying, and l,m sure that doesnt help with peace of mind, and yes l always liked everything finishing yesterday, would work till 2am to finish, l obviously cant now but still try to get on with it,. As for others, well, often dont go there, as many dont want to know or believe, if your family do thats good. Just told a girl on another cfs thread who was asking about reading up on cfs to refer to your thread.  Sat here now eyes sore and tired, l have on a couple of occassional dropped off sat at keyboard, desktop, like a toddler, head drops low then jerk awake, Any tips to help are worth reading up on, so will def look it up online, thanks
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    • Posted

      Can totally understand that. I call it my cotton wool head - can"t concentrate for long, forget words and forget how to do things I've done loads of times. It can be embarassing if you are speaking to people who don't undestand as you just feel stupid. I planned to have a lie down for 20 minutes this afternoon to rest before I made the tea and fell asleep. Woke up over an hour later when hubby came home and I hadn't even started the tea then I couldn't think what I was doing when I was making it even though I've made it loads of times!  Am off for hot bath now to relax my sore muscles!! 
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    • Posted

      lol, its good to know were not on our own witht he bizarre or eccentric behaviour,  at least we can laught at it some of the times. My best one was going for xray, usual in cubicle back opening gown on robe over it, in for xray lomin chat, back to cubicle to get dressed, passing others waiting, in cubicle hands up to take robe off, oh no, no robe on, left in xray room, so picturing myself walking past waiting people in my back opening gown, ooops, must have been a good day, as l,d a fit of giggles over it as l peered out to look at expressions on  waiting faces, blank, some days lol, other days despair, have a good night. 
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    • Posted

      Lynne for tired and sore eyes I use Witch Hazel water dabbed on them. It's excellent! And I drink Eye Bright herbs in a tea.
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    • Posted

      hi Thanks Georgia, my George Harrison secret child, stop being silly lynne, lol even at myself,  Thanks for the tip, will try that, l know you use a lot of herbal remedies, do you use anything to help with sleep, or have you used Chines herbalists. When looking up Elaine,s book online came across a site that does hair testing, not cheap, but states they scan hair strands for all manner of things, pathogens, toxins, chemicals, do a l5min phone consultation and extensive email results, usually it is herbs and vits supplaments they say were lacking in or need, Wondered if anyone has tried it, if its of worth.  Thanks for tip on eye problems, hope your doing ok.
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    • Posted

      Lol, here came the sun then it went away again! Nothing wrong with a bit of silliness, in fact I think it should be compulsary! cheesygrin

      I use Valerian tincture before I go to sleep at night and it works really well.

      I had the hair strand testing done in my old town and it gave me a list of the things my body's allergic to. I cut them out but it was near the beginning of my ME and nothing really helped me then. I've improved some of my symptoms with herbs since then. A Chinese herbalist advised Ginseng but it cost an absolute fortune buying it from him. I buy it from my herbal supplier now. I'm using an energising combination of herbs at the moment, Ginseng, Damiana and Kola nuts. I feel lifted and a little more like I'm alive. Waking up in the morning feeling like getting on with my day.

      I'm having a fairly good day. I find that if I keep thinking positively it helps a lot with dealing with the illness. Not always easy of course!

      I hope you're managing ok?

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    • Posted

      hi l knew chinese herbs  cost a fortune, l,d a friend who got some herb tea, cost aboout 28pound, the strand test they advertise is 56pounds, but its all trial at a cost and error, or not if your lucky. Will check out the energising mix. glad its helped you. My day wasnt too bad,usual tiredness on waking for a couple of hours, with a nap, but afternoon okish, went out for an hour, which was okish. Now l feel really tired, if l  were to sit back on sofa l,d be away, and too late for that, so have to try sit upright and  try to keep awake.  Not much silliness tonight, you even need a bit of energy for that. Going to have a quick look on ebay, Thanks, take care, daughter of George, in spirit at least. 
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    • Posted

      I have a sleep in the afternoons and in the evenings I have to play games to keep myself sitting up and awake. I'm always in bed and if I watch programmes I feel like I want to lie down and if I do I go to sleep. It's ridiculous isn't it, sitting up being hard work!

      Exhausted now; I've stayed awake too late! 

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    • Posted

      lol, Even more ridiculous when l,m sat here typing at 3am, what a perverse condition, its either lol at the ridiculousness, or boo oo, thatll come later, take care x
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  • Posted

    Hi Elaine. I got so fed up with resting I walked my dog for an hour this morning. So far early evening I don,t feel any diffferent what will I be like tomorrow who knows. I just feel I might have been over protective. I feel rotten and I don't want to feel any worse but how do you know if you don;t try
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    • Posted

      Hi - I managed two 15 mins walks today so am really pleased. I have a really old dog - 14 year old golden retriever I used to manage to walk for 30 - 40 mins most days but he is really struggling now and can only manage plodding out front of house so am spending a lot of time standing outside with him which I think is making me more tired than a normal walk plus it's very stressful looking after an old dog as you worry about them all the time. Was getting up during the night all winter putting the fire on for him to keep him warm as didn't think he'd make it through the winter but he's still here and bright in the house! Think that is why I've had a relapse and have lost all the fitness I build up. Used to only be able to walk for 10 mins without sitting down but very slowly built up my walking over a few years. Well done for walking for an hour - you might pay for it for a few days but at least you did it and enjoyed it at the time. If I really want to do something I save up my energy, try and do it and accept that I'm going to be tired for a while afterwards. If you don't push yourself sometimes -- you'd never do anything. It's good to have goals!! I've been feelin awful last couple of weeks but feel a bit better today but am going to be sensible and pace myself next week.  
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