Having a chronic
illness is something you’ll never get used to. You would think, because you’re
dealing with it every day, you’ll know how it works. Uh-uh! You’re
wrong! It’s like playing a
board game, of which you don’t know the rules. And whilst playing, you’ll
learn them. Or so you think. Because
just at the moment you think you get it, the rules change. Just like
that! You can’t blame anyone. You can’t leave the game. You’re right in the middle of it and you have
to deal with it.
Yesterday was
a good day. Note: a good day is a day where I don’t have to lie down for 2
hours after 1 hour of being in an upright position. On a good day I can lie
down for 1 hour. So it’s one hour up, one hour down. Oh, I was so happy!
And it was also the day, I
would take my eldest daughter to the theatre. It was her birthday present and
we had been looking forward to it.
Armed with
earplugs (to minimize the stimuli) we went to the theatre at the end of our
street. It was so wonderful to be in that atmosphere again! Being a former
stage-performer, it was so good to see and feel it all again: the vibe, the
music, the joy of the actors and the audience, the storyline….OMG! Once in a
while a tear would creep up . Because with every applause I gave, every cheer I
yelled, every laugh I laughed, I felt my body protesting. And that reminded me
that I couldn’t join. Not on stage, and not even as a spectator. “Mum, then don’t
applaude”, my daughter said caringly. So OK, I applauded softly. I also tried
to laugh less….but that was just impossible.
It was a
great show. Afterwards they opened the floor for a disco night, but we left.
With a heavy heart, but hey: I knew the rules of the game, and If I went to bed
straight away I would have a good day again tomorrow.
Today…total hangover. Totally overstimulated brain. Wobbly legs, muscles aching. Left
eye hardly sees anything. Deadly exhausted. Light and sound just unbearable.
What have I done? Didn’t I play it by the
rules? Apparantly not.
And so…another
useless day. Laying in bed. Shutting out light and sounds..Waiting for it to
get better. After three hours that’s the case, thank goodness. And I post this
message. Before I have to rest from that exertion as well.
ME means
you have to constantly adjust to the new rules of the game. And to accept that there’s
no negotiating. It is the way it is….Or it isn’t. But that “is” too…Because I
am where ME is…
