Saturday, 16 February 2013


It's a beautiful morning outside.  there was frost on the ground this morning, a gorgeous blue sky with just a few wispy pinky tinged clouds.  this is the sort of Saturday morning when we would normally get the kids out of bed and go to the forest for a walk.  this morning i just don't have the energy to do that, my legs are too weak.
So, I guess a fitbit tracker is only any use if you take any notice of it.  Yesterday I had done over 8000 steps, way over my 5000 step baseline.  Foolish on a day when I was also going out to a friends in the evening.    This is a predicament of my own making.  I chose to go for a walk down to the village with my friend and our children yesterday morning and I probably shouldn't have knowing that I was going out in the evening.  I just hate to make these decisions and in the morning, when I made that decision, I was feeling fine.  By the time it came to the evening I was already tired and not really great to go out.  It didn't help that our evening event wasn't even starting until 8pm, fine for everyone else, but I was already ready to retire to bed at this point.  I went because I wanted to catch up with my friends, because that's the calculation that you make, constantly.  I stayed too late as I often do and left at 11.40pm.  As my friend was seeing me out she asked if I had lost weight, "no" I replied.  "Your legs looked thinner"she remarked, "maybe it's just those jeans your wearing?".  "I've lost all my thigh muscle" I said " I used to have such lovely muscley thighs".  Her response...
"you need to get exercising", "I wish" I replied and left.
  This morning as I sit in bed with not enough energy to go out with Ant and help him choose a new coat, this conversation upsets me.  It hurts me,  I would love to be able to go to the pool and thrash up and down or play squash with Ant and the kids tomorrow morning or ANYTHING that vaguely makes me feel like I've exercised!  Anyone who really knows me and remembers the real me, would know how much I want to do these things.  What I really should have said to her was, "Do you even realise how much of an effort it was for me to even be here tonight?"  Of course I know the answer to that question, it's no.
I've shed a tear this morning, not in anger, but in frustration about this condition and in fear that it might never go away.  I've found this article about post exertional malaise
that I should probably send on to my friend, but I won't.  I might just have a chat to her next time we're on our own though.


  1. I agree with all you say here.... I understand and know what it is like to have to stay within an energy envelope.

    I think you are frustrated by the fact that your journey back towards normality has stalled. You are further on the road than me.

    It is so hard when friends really don't "get it". They think you should either be "ill" (and in bed) or "well" (and functioning normally). They can understand that you might have a few days in the switch from one state to the other, but cannot understand how you can be years in the limbo state.

    I also think that once you say you are "getting better" they mentally mark you down as well again and believe that is the end of the story. It's not.......

    You did well to say nothing at the time of the party. I wouldn't have helped either of you. One day there'll be a quiet time when you can be more honest - and I really do think that is best on a one to one. :)

    Best wishes.... hugs....