There was a time I was like every other teen, I went out, had fun, danced, played sport and so on. Last night I went out and danced for a few hours....I had fun laughing with friends, Sang along to pointless tunes and Laughed some more. As the night progressed Instead of getting more and more restless; I became less and less active. Going to bed at 2 am and waking up just before 12 pm like every other teen. Yet I managed to slide slowly and painfully out of bed and make my way into the sitting room just before 1/2 past 12. This is agonising punishment for the previous evening.
I miss the time when I could dance till my feet bled. I long for the days where I would stay up past 5 am and be fine in the morning. I don't run anymore; I don't swim. I simply sit and read. I simply sit and write. Sometimes I wonder if I will ever be able to do the things I love again. I wonder each day if i will be able to wake up in the morning after a short walk and feel like a young 16 year old girl and not over 72.
People say pain is pain, its not that bad. I say yes it is pain but it is the very thing that drains a man. It make you tired, it slowly makes you wonder why? And when all the whys have been answered you begin to cry, because all you want is to live a life without it.
I do not want to live my life on painkillers, and as we get closer and closer to a dead end that becomes more and more likely a solution. I will not live my life feeling distant from the rest of society, I will not spent my youth full of painkillers that send my mind on its own journey while leaving my body behind. If it comes down to it, I would rather live with the long term pain than spend my life barely knowing what is going on around me.
I know that is is daft to think I could, but I believe that I should. Just because I have HME doesn't mean I should live half a life. I want to play Hockey, I would love learn how to ride a dirt-bike. I need to be able to walk my dog and play with my brother at the park. I hope to stay up all night at a party and not have to take a single painkiller; so i can enjoy the full company of my friends.
Will that day ever come? I hope so.
What does your condition prevent you from doing? ask yourself...can it be changed?
Kind regards Your Friend