the naME of the gaME

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…