Having CFS and keeping to any kind of schedule is pretty much impossible, because day to day the way you feel is so incredibly unpredictable. I did initially think I’d be posting every other day, but then all my uni days laziness returned and it became a case of I’ll write a new post… but just one more episode of Gilmore Girls first.
Another reason I haven’t posted is because I’ve been unusually busy, by CFS standards that is. My sister and two of her friends came to visit for a few days, which I have to say I was really dreading and had a somewhat epically bad and fairly embarrassing public reaction to when I found out. However like many things we dread in life the reality wasn’t as terrible as I had anticipated and we actually had some fun- I did sleep for 16 hours after they left but that was to be expected!
The conundrum of the illness is how much is now being perpetuated by the psychological effect it has inevitably had upon me. I have been living in a ‘Can’t’ state of mind for months so now it is really hard to know when I really can’t and when I’m psyching myself out of things.
I personally know the power the human brain has upon us and the influence of unconscious thoughts. The programme I’m working through at the moment is very much focusing upon unravelling the overreaction of my autonomic nervous system- believed to be the cause of CFS and fibromyalgia.
Having said that one thing I’ve really struggled with is when is a good day a good day and when is a good day just a break from bad ones?
Let me elaborate if I may.
When you experience a cyclical illness such as this you find that you stop trusting your body. I now associate walking with feeling ill and with crushing exhaustion. I find the same thing with showering and washing my hair- if you know me then you know my hair takes some taming. Now these are just normal everyday things which you can’t be afraid of if you want to live normally!
Yes there have been times walking and showering have really set me back, but other times when both have been fine. So how the bloody hell am I supposed to know when its going to knock me on my arse and when its fine?!
Very confusing stuff.
So you see, even when I am having a positive few days and ‘progressing’ I am trying to learn to trust that and not doubt every second of it. Worrying about pushing to hard and then punishing myself if I overdo it. That’s my biggest battle at the moment, getting back to trusting that my body wants to function healthily and that when I’m feeling ok it’s not going to come crashing down around my ears.
So I’m working hard every day to try and do all the things I can to get this under control and be able to actually celebrate when I have a good few days!
Hopefully I’ll have another few, fingers crossed….