1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

Living with ME

Posted , 3 users are following.

alicia
alicia

Today the nice postie delivery man brought me my copy of this book by Dr Charles Shepherd from Amazon.

It's a big book, but what a great book. :D

I never knew someone had written a book all about me, I don't remember being interviewed for it. How come he knows so much about how things affect me? Oh yes, because he knows all about M.E.

Anyway, after that drivel, the upshot of it is that, having dipped into it like a box of choccies, I am delighted to discover that I am not going mad, neither have I imagined it all. It's all there in the book, everything I have been saying for quite some years. Very reassuring. :D

0 likes, 5 replies

5 Replies

  • katie.k.
    katie.k.

    Posted

    Yes, as a sufferer himself, he really understands how we feel, Alicia.

    I heard him speak last September at a local ME meeting - but I felt so poorly I had to leave half way through which was a pity - it was so cold in the meeting room which didn't exactly help, and the lights were too bright. And the speakers were too loud - apart from that it was fine!!! smile

    My favourite book is still the one by Dr Anne MacIntyre - also a sufferer called simply M.E. - I constantly refer to it for reassurance - and to remind myself, that I am not going completely round the bend. :roll:

  • Dale
    Dale

    Posted

    I found a book called The Perrin Technique by an osteopath bloke called would you believe Perrin! He does have a first name but it escapes me at the moment, like a lot of things lately!! :roll:

    He advocates a series of massages to bring about a CURE!!! :wizard:

    Wasn't too sure what to make of it. Anyone else heard about him?

    Dale xxx

  • katie.k.
    katie.k.

    Posted

    Hmm .... I like the sound of massage, Dale - but I can't really see how that can help. We could all end up spending hundreds of pounds trying out various 'cures'. Also, I find the effort of even having to think about making appointments for these various therapys is too much for my brain to think about. :?

    Alicia - hopefully your husband and sons can be encouraged to have a read of your book - and then perhaps they will be more understanding. smile

  • alicia
    alicia

    Posted

    Me too, but it is encouraging me to change the way I look at myself and my limitations.

    I am going to try and stop saying 'I suffer from ME' because that immediately puts me into the role of victim. I am going to say instead that 'I have ME and I am living with it'. Also I want to try and stop immediately thinking 'I can't' when I am asked to do anything like a family outing or a visit. I would prefer to think 'how can I do this?' and then look at what I need to make it happen and ask for help.

    I am sooo bad at asking for help, I just think everyone expects me to manage. :oops:

    My son came for dinner last week and I wanted to cook a proper meal. This is made harder because my husband is vegetarian and son is a carnivore. In the past I would start preparing the meal about 4 pm and fail to co ordinate it all and be in a right state by the time we ate that I wouldn't want my meal and I would be close to tears. This time I started at mid day and prepared one item at a time with a break in between. I also made hubby's and pre cooked it so it could just be reheated. As a result we had a nice family meal at 6. I wouldn't be able to spend 6 hours on a meal every day, or even every week, but it just shows that with the right planning and approach things I thought I couldn't do might actually be manageable. Especially if I swallow my pride and ask for help :D

  • katie.k.
    katie.k.

    Posted

    What you are saying, Alicia, is really sensible - from today I am going to say 'I have ME and I am learning to live with it.' (I just had to scroll down to see what you had said, because I had already forgotten it :roll: ) My brain can't seem to retain anything these days.

    On the rare occasion I have to produce a family meal, I too do it in stages and prepare the veg the day before and get crockery etc out of cupboards well before hand (that is the most tiring bit). I do cheat quite a lot too, especially with deseerts - we have a good Cookshop nearby! smile :magic:

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.