Monday, 14 June 2010

Views from Shoshi's Settee - M.E.

After all that busy, busy, busy, making cards recently, I'm totally exhausted today. I've been what my hubby calls "floppy" all day, and have hardly stirred from the settee. I didn't wake up until late this morning and didn't actually get up till around 11 a.m., and then slept again on the settee this afternoon for an hour or so.

This is the dreaded "payback" after a person with M.E. has overdone things. It's one of the cruellest aspects of this illness - it's very unpredictable, because the "post-exertional malaise" can be delayed up to several days after one has overdone things, or it can come almost immediately. You just never know... Also it's uncertain how long it will go on. With me it's usually over after a day or so (depending on how much and for how long I've overdone things) but with some people, even a minor amount of overdoing things can send them into a relapse that might put them in bed for a month.

I've felt very weak, had more muscle twitches than usual, and have felt utterly drained of any energy to the point when even lying down and breathing makes one feel tired. I've had a headache most of the day and my temperature regulation has been poor - rather like having flu but without the sneezing and runny nose. Although it hasn't been too bad today, I sometimes suffer from hyperacusis when I'm like this - the slightest sound is unpleasant and makes me jump out of my skin!

I'm hoping that I shall feel better tomorrow, because it's my dad's birthday and I want us to drive over and see him, and I've also got to do some food shopping. There's a whole heap of things waiting to be done as well, but I shall just have to get to those when I can.

One of the most important things I've learnt through having M.E. is that however bad I'm feeling physically, it's important to give thanks for all the good things in my life, and to keep cheerful and remember things could be a whole lot worse! I have so much to be thankful for, and it's rare for me not to be in good spirits, although I do let frustration get the better of me on occasion.

Fighting this disease is the worst thing you can do - it just makes everything much worse! The best thing to do is to go with the flow, listen to your body, rest when you need to, pace yourself when you're feeling better enough to do things, and accept your limitations. I know that I am unwell, disabled and need a lot of help, but I am still "me" even if it's "me with M.E." and the M.E. isn't what defines me as a person. It's part of my life, but not the most important part!

The most important part is the people and relationships in my life: God and my relationship with Him through Jesus, my wonderful hubby, my parents, my friends, including those I've met online, and also a sense of humour and a bubbly, up-beat personality, my creativity and appreciation of beauty in all its forms, our kitties, the beautiful place where we live, the fact that we have enough when so many people have so little, and bright hope for the future.


  1. Hi Shoshi,
    Thanks for your warming comment on my blog. Terribly sorry to hear you have M.E. My friend had it for years only recently got 'cured'. I will find out the way she did it because she tried everything.
    I had Candida which I am over now so I can fully sympathize with your day today, been there, done that. Luckily all I am left with now is alot of food intolerances.
    Making cards is a low energy pursuit and a psychological booster, at least if ones brain is functioning!
    I'm going to have a good look round your blog now.
    Thanks for following X
    Hope you have an 'up' day soon.

  2. Dear Jan,

    Thanks so much for your lovely comments! I'm sure I shall feel better tomorrow... As you say, card-making is a pretty low energy pursuit and it's rare that I haven't got the energy to do anything.

    There are loads of weird and wacky "cures" for M.E. out there, most of which are not as benevolent as they seem! If someone has genuine M.E. there is no cure. You can go into remission (as I did for many years) but even if you seem a lot better, it still affects your life. It's mostly a case of management, and a good attitude.

    Hope you enjoy my blog! I'm fairly new to all this (blogging, papercrafts etc.) but am getting totally obsessed! It's wonderful!

  3. Dear Shoshi,
    My friend Anna in the UK suffered for 20 years with ME, diagnosed ME. Heres what she told me recently:
    "Various things helped a little, like the candida diet, various suppliments etc, but I only recovered completely last year after doing the Lightning Process"
    The Lightening Process details can be found by googling it. All avenues are worth exploring. How long she will 'recover' for is anyone's guess, any interlude is better than none though. I thought I'd pass the info on as I am a great believer in the sharing of information.

    I too am new to blogging, I never realised blogs could be so useful and interesting, more often than not better than the normal 'web' stuff.

  4. Thanks, Jan. I've investigated the Lightning Process and am not impressed - as far as I can see, it's basically very expensive positive thinking wrapped up in mumbo jumbo and the only effect it has is to empty your bank balance. I've heard stories of people supposedly with ME making a miraculous recovery but there's usually another side to things like this, and what I have discovered - and after much discussion with others in the ME community - it's not something I'm prepared to involve myself in.

    Thanks for trying to help, anyway.

    Kindest regards,


Thank you for your comments! They are much appreciated. Spammers, please be aware that I read and moderate ALL comments, and yours will be deleted before publication, so please don't bother!

Related Posts Plugin for WordPress, Blogger...