Tuesday, March 27, 2007

Work or death!

Well.. Maybe not anything quite so dramatic, but i've decided i'm sick of being sick and i'm sick of sitting on my arse and being skint!

I've spoken to the jobcentreplus people and they're arranging for an adviser to call me, in the hopes I can sort out either a training course or even (please god!) a job.

I've been sitting around waiting to be well enough to work and that hasn't happened, so instead i'm being pro-active, I'm going to try and find a job that works around me instead of it being the other way around.
Who knows - if i'm lucky they may be able to send me on a web-design course, or even offer me some in-house training somewhere so I can get paid while I learn.. Anything has to be better than the way i'm doing things now - and if the worst happens and I end up having a relapse..? Tough, I've not lost anything and at least I'll have tried.

This is about self-respect and making my life better, ok, things are not that bad - I do like having the time to do what I like, but at the same time, I want to be paying my way and not worrying about money all the time - for that to be resolved I need a job.

Fingers crossed this works out for me!

Friday, March 16, 2007


I've made the resolution to try and pace myself well - this is proving a difficult task. I have a timetable that i'm supposed to stick to, but just 4 days in and I slipped - despite knowing full well I had an evening out planned with friends, I spent a good hour playing on the wii (fishing, bowling and golf) I also went for a walk around the shops because I wanted out of the house for a bit..
Neither of which are on the timetable - and I only rested for about 30 minutes in the evening.

Which is why today I had the full on 'cataplexy' thing going on, I was awake(ish) I was certainly aware of things in my immediate vicinity - I just couldn't move a muscle, everything was fused almost solidly into whatever position I'd fallen whilst asleep - so at least I was comfortable eh?!
Finally managed to get up around 1.30pm, had a small bite to eat and my pills then checked my mail - now I'm here.

Why am I here?
Well, one of my emails included this link and having gone through the site I wanted to work something through for myself.

This paragraph really struck a chord - it's exactly what I've tried to explain to others but couldn't:
if you have ME/CFS you cannot allow yourself to fully experience all your symptoms all the time, or you would never get through the day. Out of necessity we detatch ourselves from our symptoms to some extent because that's the only way to survive ME/CFS
The thing that really struck me though was the section on reverse therapy. I've heard of the process before but it's another one of those treatments that has made something inside me rebel at the thought of trying it - an instinctive rejection of something that will not help and will only cost me money I don't have.
There's a lot of those kind of therapies around.

Having read about Matthews experiences I can honestly say I'm still not sold on the idea myself - but there are some parts of it that made me go "hmm.. actually, there may be something in that"

For me it was this portion that struck a nerve:

Getting your body to trust you again

For most people of course ME/CFS is post viral. But to the body/mind a threat is a threat - physical injury, a virus, stressful life events etc, they are all the same. After these experiences the body goes into a heightened state of alert but we carry on because we don't know what else to do. The sense of something being wrong gets stored in the body tissue and a concious realisation that the problem has been solved is not likely to release it. For example, during my illness the backs of my legs continued to be stiff and despite years of Yoga practice, any exercise to stretch them just resulted in the legs stiffening up again, and I experienced an increase in tiredness.

After the second session I realised my concious mind knows I have no intentention of returning to the house where I was assaulted, but my body did not! So I did a Yoga stretch pulling on the backs of my legs, then thought to myself "I will never again live in the house where I was assaulted". I waited a few seconds, and lo and behold, the muscles just let go in a way they hadn't done for 3 years! I then promised myself, outloud, to "never again run on empty", as I had when working whilst being exhausted by the head injury. And I got the same result!

It made me think of my responses to my mother - how the second I made the decision to never have her as a part of my life again, most of my symptoms practically vanished, how if I dream about her or one of the family bring up the subject I start having problems again. I know that's a very simplistic way of looking at things - but it's also an undeniable fact that I'm a healthier, happier person if she is not in my thoughts, never mind my life.

The problem is, how can I make it clear to myself that she is going to remain a stranger? Short of cutting off from the rest of my family completely I can't guarentee it so it's not as though I can make that kind of promise to myself and keep it, perhaps this is why I'm so eager to move as far away from Manchester as possible? Could this be the subconcious reason I'm so happy when I'm looking for a new home and so depressed when it falls through?
But then of course, I could just be grasping at straws again to explain my symptoms and she's conveniently easy to blame

Anyhow, this site is definitely worth a look, if only for the eye exercises, the miso soup recipe and the yoga demonstration.

Sunday, March 11, 2007

Moving on up

..and moving on out.

That's right, we've decided that we're right royally sick of the muppet downstairs - even though we can mainly tune him out these days. Instead we're looking at moving home, possibly Knutsford way - perhaps even as far as Sandbach.
I'm no longer bothered about getting a decent doctor so it doesn't matter where we move - lets face it, I have a fantastic doc now but he can't do anything for me.

I had a long hard look at myself when the DLA decision came through denying me any money and I've come to the conclusion it is probably a justified decision.
Before I went into hospital for the perianal abcess experience back in.. um.. October? November..? Meh! Whenever it was. Anyhow, prior to that I was doing really well, but I was pacing properly and making a concerted effort to stick to a healthy diet and a decent schedule, that lapsed pretty much as soon as my backside broke out and I've not really tried properly to bring it back - this is why I'm so crap at present, I have no one to blame but myself.

The worst part is I know better! I wrote an entire page on the benefits of pacing for my website! I know eating and drinking certain things help more than others. I know beyond a shadow of a doubt that diet has probably the biggest impact on my ability to manage this illness than anything else, yet I've been lazy, I've allowed myself to sink further backwards because it's easier to let Stef do everything, if he doesn't feed me, I don't eat - even when I'm at a suitable level of energy to make something, If he doesn't tell me I forget to take my pills, I don't go to bed or get up at set times..

I've allowed myself to become a leech. That's about to change, I had a look at my life and what I'm becoming and I don't like it one little bit.

Hence the chat we had earlier.

I've made a timetable for myself as I did the last time things were going well. the only things written in blood (or coloured in red) are meal times and waking/ sleeping times. I have pencilled in a cleaning rota interspersed with rest periods and free time, but these are subject to change depending on the demands of the week. I've also gone a step further and done a little nutritional research.

Since Stef want's to lose weight and has asked me to help him with this I've devised a shopping list and provisional meal plan using the Glyceamic index sadly this means I have to give up a lot of my comfort foods - the worst being mashed potato (my absolute favourite) in favour of things like lentils, it's not as bad as it sounds though, Stef is an amazing cook so he even manages to make lentils taste delicious - but it's not the same as a proper plate of mash is it?

The upshot of all this is if when I've followed this pattern for about a month I should be approching my former energy levels - maybe even sooner as long as no other colds/ ear infections etc sneak up on me which means I'll be able to recommence driving lessons, I need to get my licence before my theory runs out so the sooner the better - this also means once I've passed my test i can start looking for work, it's travelling that wrecks me more than anything else - even when i'm doing well and pacing properly, my own car will halve all journey times and ease that particular piece of working life no end.

See, I'm back to being a positive bunny again - it's amazing what a kick to the head will do for you sometimes..