I wish there was a way for people to understand without me going over all the details of my condition. When I say I cannot do it do not want to do it, I wish they magically guessed the reason and did not ask again. Most of the time when I say no to a sport event or to a game that requires physical strength, it is because I do not want to feel the pain the next day, and wake up crying.

For you people it might be a 30 seconds run to the bus stop, for me it is eternity. It might be only three floors for you, for me it is equal to climbing the Mount Everest. You might have an hour of fun with maybe a bit of pain the next day, I have pain for a couple of days.

Either it is a selfish act because you want to have fun yourself or you simply want me to be part of and enjoy. I know you mean well either way. And I wish I did not have this condition so I was not a fun reaper, but I have.

Here I am, in bed, crying for the past three hours. I am in too much pain just because I did not want to explain this disease, I did not want to say no for the fifth time, and I did not want to spoil the fun. I have tons of stuff to finish yet, I cannot make that move to get out of bed. Not yet. After three hours, I’m still waiting for the pain to disappear. I have been typing this with a few fingers over the phone. The single move that doesn’t hurt.

Things I cannot do, I do not want to do… there is a reason. I do not always feel like explaining the science behind it. Because I know what you see. You see a woman who looks fit with a bit of belly, a human with both legs and arms. You assume that under the skin everything is as it should be. But it is not. Until I learn to say a firm no without spoiling your fun, I wish you stumble upon this or a piece of text like this one so that we can have fun next time in our own ways.

I have to make that move now and hope that pain is settled later in the day. I also have to learn not to turn this pain into agony. Yes it hurts, and it will always hurt, but being depressed about it does not help much, does it?