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.