Monday, 22 November 2010

You know you've got ME/CFS when.......

I'm not one for inspiration, I seem to drift along in my world and miss all sorts of shareable, blog-able stuff. Or Maybe, it doesn't even happen to me, I dunno!
But I got a tweet (twitter speak for the uninitiated!) today, and I quote,

'You know you've got ME when..... you eat your cereal with a large spoon cos it takes less energy'.

This got me thinking about the little quirks that have crept into my life and become almost habitual since becoming ill, the kind of thing the doctors never warn you about!
I have to say I often let my cup of tea go almost cold, so I can drink it in just one 'mug-lift'. I also shuffle about the bedroom, herding dirty laundry (socks are especially tricky critters!) with my feet so I only have to bend down once to pick it up. Mmm, sorry for the slightly grubby picture of domesticity, but such is my life!!

I walk around accompanied by a kind of wind-chime sound when I'm out of the house as I have to attach my car keys, house keys and work i.d. to my person, so that I don't lose them! Goodness only knows what would happen if I fell in the lake.....sink like a stone I expect!

I'm certain these aren't the only things that I'll think of, and will probably add later, but please let me know of any little things you do now, that make life a little easier.

You know you've got ME/CFS when .............


  1. I like your sock herding technique!

    You know you've got ME when you swear blind you never said such and such but everyone else in the room remembers you saying it - and it was only half an hour ago. Or when you feel thirsty and discover the cup of tea you made is cold because you forgot about it just after you made it.

    You know you've got ME when you've got a route worked out to swing from wall to wall and between pieces of furniture to aid staying upright but you're not a drunk or a monkey. And when you're in a strange house it takes a few moments to figure out how to make a journey from one room to the next like doing a ski slalom.

    I'm a portable pharamacy with pain killers, migraine tablets & tummy medicine on my person or in my bag at all times - just in case.

    I also wear hoodies almost constantly (unless I'm going someplace smart) in case I'm suddenly a bit cold or I get a blinding headache and need to hide. And I only wear hoodies with zips so I don't need to lift my arms to get it on. Also I usually have a scarf/wrap with me for warmth if required or for drapping over face to avoid people germs or bright lights if I get a migraine and I no longer care if I look like a mad woman!

  2. YES!
    I forgot the route making and thought processes involved in just getting around people and things!

    I love your description of the hoodies and wraps... I can add sunglasses to that, I always have sunglasses about my person. I get the looks also!

    I always have a few earplugs too, the nice yellow squidgy ones that fall out of your pocket/handbag/car door and bounce about embarassingly before settling right in the middle of the floor, for all to see!

    Oh, and the shooting stick-you know, with the tiny uncomfortable seat on the top, the one you'd only use if you were desperate for a sit down-that'll be me then!

    Thanks for 'coming clean' Rachel, it's great to realise we aren't alone, and gives all a bit of a giggle in the process-and we could all do with that hey?!!!?

    take care

  3. ok..... get out of my head!!! seriously! haha..

    last night about 7pm I was running the water for a bath. we have one of those taps where the hot and cold come out of the same spout (?!). So the water is too hot, and i'm turning the cold OFF thinking "why is this so hot? owww why is it burning my hand? why is this getting hotter arghhhh"........ 10 seconds later.... OH turn HOT tap off if you want it to be less hot... doh! and i thought.... god you know you've got ME when you do something stupid like that hahaha!

    Seriously! And then i thought, i'd ask everyone on twitter what there's was and we could put them all together in a BLOG POST!!!!! hahahahaha. but of course i forgot until i saw this.. adn you know you've got ME when you forget everything haha. xxxxx

  4. Kitty,
    Hee Hee! Sounds like a traumatic bathtime!

    I once wanted to paint the inside of my back door to match the kitchen. I spent time and much energy doing so, and waited a couple of hours for it to dry. It was only when I closed the door that it dawned on me I had opened the door and painted the OUTSIDE!

    URGH! (slaps forehead!)

    I could go on.....
    Seriously Kitty, thankyou for sharing, it helps!

  5. Darren, a Twitter friend said -

    "mine is-you know you've got #mecfs when one pot cooking is all you do apart from blending everything into a soup."

  6. .....when you pay for something in a shop, and as the assistant hands you your change - you forgot what you bought!


  7. And, one last one from me........
    You know you've got ME/CFS when you can no longer cope with the normal noises in the house without losing balance, coordination and cognitive function. Brain is buzzing but my head is full of concrete and I cant think.

  8. seen on Twitter....
    I knew it was a bad night when I wiped my glasses with a cloth then went to put the cloth on my face and hand hubby my glasses!


Any comments?