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Saturday, 27 July 2013

Delayed Payback

One of the worst things about living with M.E. isn’t the pain and exhaustion I get from doing anything (physically/mentally/emotional), but the fact that these symptoms don’t always come straight away.  This is something that is the hardest to explain to others.

The problem with this is that I can end up doing even more when I think I haven’t been too badly affected by living my life, and so it can build up until suddenly I am bedbound and screaming in pain. Yes, this is an extreme example but it has happened to me in the past.

On Tuesday I was able to go to the cinema with my sister – this is one of the things I miss, and so a very big deal for me – but the really awful symptoms didn’t hit until Thursday, causing my sister to say ‘but you didn’t do anything yesterday’ which was sort of true, though I had spent longer on the laptop than I knew I should have.  I do seem to be getting better at resisting the urge to do everything at once when I have a ‘good’ day, but it is still a struggle for me.


marigold said...

It's frustrating to hold back when you feel well, isn't it? Like you I'm much better at pacing myself than I used to be, but I still get it wrong at times and to a certain extent I've accepted that I always will make mistakes. There are too many variables to get it right every time and doing too little for too long is as damaging as occasionally overdoing it. I think I need to test my boundaries sometimes to know if I'm making progress.

marigold said...

P.S. I hope you enjoyed the film!

Sophie Juliette said...

Oh lovely I completely feel your pain on this. It is just so difficult to try to explain to people who have never suffered from anything what the consequences of things can be!

Next year I'm living with some uni friends and I think they will get a big shock... At the moment I go out with them once or twice a week but what they don't realise is that when I go out I spend the next day in bed!!

Hope you're doing okay at the moment :)

Sand said...

(((Hugs))) understand completely and utterly and its one of the biggest challenges about fatigue. Wishing you lots of luck and a speedy learning process ;)

hayleyeszti said...

I haven't been to the cinema in years! God knows how the loud speakers and uncomfortable chairs would effect me. I'm glad you got to go - what did you watch?

Unknown said...

Thank you so much for your comments - it is a lesson that I'm sure I will have to learn and relearn and will probably never get quite right.

marigold - I definitely feel that if I didn't occasionally try for more then I would never know if I was making progress or making myself worse by not doing enough.

Sophie - I completely understand what you mean. When we go out with friends we put on an act of being 'normal' and 'well' as that's the way we feel comfortable doing it, and we don't want our disabilities effecting our good times as well. But the truth is we have to pay for those times of faking it, and it is only those who live with us that really see the consequences.

And for those of you interested - we saw Monsters University which was definitely worth it.