Back in 2005 I was getting to grips with ME/CFS and how it had changed my life, things were pretty bleak:
How ME/CFS can get you
Basically this thing has taken over my life. I’ve gone from being the kind of person who’s always on the go and never stops, to being the kind of person who never even gets close to starting.
To be honest I’ve gotten to the stage of not wanting to do things because I’m afraid of setting it off.
If I have a bad day – it’s a really bad day, by not exerting myself in any way I can avoid bad days.
If I feel even the slightest bit tired, I’ll just stay sat on my arse doing nothing – not even the dishes. And I hate it. I hate this weak whingy little piece of useless nothing I’m turning into.
It’s frustrating, depressing and at times feels completely hopeless – it’s even worse after a couple of good days, when I feel positive and do things normally without even thinking about it, if I have a bad day then it sets me right back for weeks mentally.
I don’t like to go out alone anymore, it’s not so bad going to a place where I’m meeting up with people, but I won’t go to town alone. I can’t stand crowds anymore, they stress me out – I used to work as a bouncer in a nightclub environment ffs, crowds never bothered me in the slightest…
This whole thing… It’s just rotten, I feel like a complete hypochondriac everytime I mention something aching or such and such a thing isn’t ‘right’ because just lately that’s everything. I try and act ‘normal’ but I hurt all over pretty much constantly – it’s usually just a dull ache, a nagging pain that I can put to the back of my mind and ‘ignore’ but sometimes it flares up in 1 or 2 places, on a bad day it flares up everywhere.
When I’m talking to people it’s like there’s a fog between me and them, I get what they’re saying and I can act like a rational person, but I’m not ‘myself’, I know it – but very few people I hang with these days have known me long enough to see the difference. On a bad day I couldn’t hold a conversation with a goldfish.
Basically, it’s a memory thing more than anything else, it plays tricks on me – only little things, but they mount up. For example, I’ll get a text message and in my mind I’ve not only replied but possibly had an actual conversation with that person – a few weeks later, I’ll get another text asking if I’m still speaking to ’em because I never replied to the first one.
It’s all stupid petty little things like that but it’s in every aspect of my life and they’re whittling away at my self-confidence, my ability to be me and just get on with things.
Stef actually said the other day that I shouldn’t stop doing things because of this, I should do them anyway and if I have a ‘sleepy fit’ just go with it.
I’d like to do that, I really would.
But I have a real mental block – I’m almost terrified of bringing one on – it’s stupid, I agree with what he said 100% but I can’t seem to put it into practice. Instead I just shy away from doing anything – including housework, and then hate myself for being a ‘lazy cow’.
I’m just glad he’s here to push me and ‘bully’ me into doing constructive stuff, I may complain and act all hard done by – but I do appreciate the fact that he cares enough to do it.
Stef is still with me, we have a beautiful daughter and I not only leave the house but I’m studying, meeting people and I can now just ‘go with it’ if I have a sleepy fit because I know it’s not the end of the world.
Life is good, even with ME/CFS.