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/CFSThe 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:
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.
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!
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.