Having M.E. sucks great big hairy donkey bollocks.
I do make a conscious effort not to moan about it in general – to anyone. If I’m honest I try really hard not to even think about it.
But I’ve had a long chat about it today and so many things are buzzing around in my mind I need to put it down somewhere, I’ve kinda lost track of my blog being that place the last few days – weeks even, I get so engrossed in the lives of others that I’ve not had to really think about mine, except in a general way.
So today, this is all about me.
I always write on the fly so I hope it doesn’t turn too maudlin even if it is a whinge, but this is in lieu of someone being here to talk with about it all.
I can’t talk to anyone about it really, I get too upset and give up trying to explain myself – even when I think its important.
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.
Aminatta noticed straight away, but she’s known me longer than anyone. ugh… The tales that girl could tell…
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.
Talking to Ben (the acupuncture guy) today has helped a bit. I feel a little more positive, I don’t know if it’s because of the session or because I’m finally doing something constructive myself to combat this – either way it’s a good thing.
He seems to think I could have had this longer than the 6 months I’ve been off work with it, my history of giving up on things is an indication apparently, I’ve always gone through ‘phases’ of feeling fed up and tired and it takes me forever to shake off an illness.
At those points I’ve usually just got a new job or left my course or moved house – this time my physical situation became so bad I needed to seek medical help instead of just blaming it on whatever stresses were in my life at the time and trying to change them.
I’m inclined to agree when looking at it from that perspective, makes me sound better anyhow lol
I think if I can do something to remedy my horrendous financial situation I’ll feel even more positive – it’s just whenever I start talking about this to anyone I can’t help thinking about how it’s fucked everything up for me and I get all stressed out and depressed.
I had a large sum in savings and was looking forward to finally buying a place of my own that no bastard ex could take off me, I had a pretty good income, no overdraft and the only debt was one loan – of under £1000.
Now, within just 6 months, I have NO savings and I’m constantly worried I’m going to go past my overdraft limit of £1000 through the financial commitments I made within my previous income – this was especially true when I was trying to sort out housing benefit and the landlord put the rent up… It just sux.
Didn’t stop me going out and getting seasons 3+4 on dvd of SG-1 to add to my collection though.
Winning money ROCKS!
*mental note, take them off the wishlist.
Basically, I came out of the clinic feeling positive and slightly more awake than when I’d gone in, after the horrendous journey home (Swinton to Newton Heath is a pisser of a journey on public transport) I felt like a wrung out dishcloth and more depressed than ever because my house is a shit tip.
I’m now going to have a Dark angel and SG-1 marathon followed by a hot bath and a decent tea.
That should kick the self-pity back into touch, I may even attempt to do some cleaning then – but I doubt it.