Couldn’t have said it better myself

This letter says everything you need to know about ME/CFS

This portion I personally can relate to so much, it describes my problems perfectly:

He is hard to talk to sometimes because he forgets what he was saying in the middle of saying it, and cannot get it back. He cannot remember what the right word is to explain something, He mixes up words in his speech and sounds like he is backing talkwards. This may be funny on some occasions and we will laugh, because there is nothing else you can do, but it is very frustrating and he often says he feels “retarded and stupid” when this is all out of control.

and this part says it all:

They see him fiddling around with computers and wonder why he cannot or “will not” get a job. No one would take him for employment if he said: “Yes I can do the work, but what used to take me a few hours now takes me a few days, and I cannot guarantee you that I will even be able to do it without making mistakes, because my hands do not do what my brain tells them to do, and I could possibly fry your computer hardware accidentally and cost your company hundreds of dollars…oh and I have cognitive thinking problems so I may need someone to remind me constantly about what I am doing, because I can forget how to fry eggs at home, let alone remember what windows update/system restore/hardware instillation I was supposed to do next.”

To my brother who constantly calls me a lazy malingerer, to the people who keep telling me to ‘just push though it’ I wish I could make those people read this letter – but they won’t their minds are made up – and besides, I’m nothing like this man, they’d just see the parts where he is worse off than I am and so while they may make allowances for someone like him, I’m just lazy.

But to be honest I’m past caring, yes, it still hurts that I know people think that of me, but I know I’m trying as do the people who truly care for me so screw ’em.

Roll on seeing this back to work person, hopefully she can help me find something that won’t be affected by my difficulties.

In happier news, I only had one crash this weekend and I’m about to go shopping with la famiglia in Watford, this makes me a happy bunny, yesterday I ate my bodyweight in good food, played lawn bowls and generally had a good time – I even got to watch Kyle XY while everyone else was outside laughing it up at the music wars going on in all the gardens (it was just too loud out there for me, I couldn’t concentrate on anything and the strain of trying to was giving me a stinker of a headache.)

Right, Stef wants the pc so I’d best shift and get some breakfast – yey for food! it is truly the best invention ever, I could almost follow the beliefs of those around me and say ‘thanks be to god’ for it.. Lets just say, I’m open to the suggestion of a higher being.

4 thoughts on “Couldn’t have said it better myself

  1. Pingback: Rosevibe » Blog Archive » Back to work

  2. Nicholas Butler

    Push through it ? Hah those are the sort of people who have never really been ll or suffered from a debilitating illness. They are the sort of people who say to me “that astmha is in your head”, really ? well in that case i can just stop thinking about breathing then. And yes people do read your twitter posts.

    HA! I’ve never heard anyone say that asthma is in your head – but then that has a recognisable physical manifestation (which sucks the big one) and a tried and tested medical treatment (which means more crap to carry around with you) but it’s good to know that ‘microblogging’ does work *grin* Good to see you in my virtual home Nik 

  3. mojo shivers

    You are a testament for the amazing things people can do despite what everyone else thinks about them.

    *blush* I wouldn’t go that far m’love, I as human as the rest of you – and I complain REALLY well to boot. Well, maybe not ‘well’ but copiously 😉

  4. K. Restoule

    Push through it? What is wrong with some people. If you want, I’ll fly over and give those people a smack, and the the nasty Canadian will go home and you will not be responsable for my actions 🙂

    *kiss* I thank you most kindly good sir – but that will not be necessary. Instead I’ll just fly over there to escape once you’re settled into your new pad 😉 

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