Not very often, but occasionally, I get quite cross/mad/irate, however you want to label, those feelings of utter frustration and powerlessness about a situation.
Whenever you read something about CFS/ME it is usually about 'managing' it, and rarely about a 'cure'.
Over the past ten years, I have become a bit of a pro at managing CFS……which is great, but also not, at the same time.
It confuses me how my body can have such little energy. At the moment it has a whole lot more than it has in times gone by, but there is no certainty that it will remain this way.
Yes I am doing 'well', life is pretty good, but it's all due to a lot of careful planning, timetabling, and pacing.
I can't climb a mountain ( or even a hill ! )…..
I can't swim for more than a length at a real push….
I can't walk more than about 400 meters…..
I can't spend a whole day socialising…….
I can't go to a church conference….
I can't go out in the morning with my family and then stay up and alert in the afternoon too…..
I can't go out in the evening more than about once a month.
I can't commit to anything, as I don't know If I will manage it on the day.
I don't usually list these things, as it's not the most positive way to 'manage' CFS, but sometimes it does me good to stare CFS in the face, and see all it takes from me.
I would LOVE to be fully better, fully well, tired like any other parent of two small kids, but not to the point of exhaustion.
So many thoughts have to go into planning a trip….can we park nearby? will there be seat to sit on,………..
I guess I could do most of those things on the list above, but would spend a week in bed recovering.
The thing I find the hardest to deal with, is the mental fatigue. When spending time with other people, which I really enjoy, I just kind of run out, run out of energy to think and talk. I can do it, but then I need lots of recovery time afterwards.
There has to be a reason, for it.
I refuse to believe that there isn't.
So there they are, the thoughts which I usually hide in the back of my mind, safely tucked away. Preventing them from eating away at my positivity, and enjoyment of life.
As, most of the time, I really do love my life. I have two beautiful healthy kids, a husband who is healthy and with me.
This year I celebrate my parents 60th birthdays…….amazingly rich am I.
It's pretty great.
But if the CFS monster could get lost, I would be glad.