I have a disease that is slowly breaking my body down

I have a disease that is slowly breaking my body down. Every day I loose a little bit more function and everyday I am in more pain.

Pain is a horrible thing because it takes over your whole life. When the pain gets bad I can’t move or think. And when I can’t move or think there is not much I can do!

I get pretty lonely because I am stuck at home in bed and I can’t do the things I used to. And I don’t get to see many people anymore apart from my family and hundreds of medical people.

I also get very tired and spend a lot of time sleeping. Sometimes I sleep all day and wake up at 3am. And no one else is awake then and I get bored so I go back to sleep!

But I try and do as many things as I can. And I try and make my days meaningful.
Sometimes it’s just about little things. Like when I feel really bad and can’t do much I watch a good film instead of just staring at day time soaps.

When I am lonely I sometimes get really upset. I feel like the world is still going and it’s forgotten me. When that happens I try and call someone for a chat. I like it when my friends tell me about what’s happening in their life. Sometimes people think I get sad hearing about all the things they can do that I can’t, but letting me hear what they are doing helps me share in the real world.

On the days where I am in a lot of pain I try and do things to keep my mind active so I don’t focus on the pain. I used to read lots, but now I can’t do that so I have developed an addiction to those story CDs that read the book out loud.

Some days I feel good enough to get out of the house. I like going to visit people and I like sitting in coffee shops and watching other people. Sometimes one of my friends drives me to the beach and we sit and watch the sun set on the waves and talk. That’s one of my favourite things to do.

I like to be as independent as possible and I try and do as many things as I can by myself. If I want to go out, I have a cab charge and a book with pictures and addresses so I can catch a taxi to places by myself. I take my mobile and I know how to call people if something happens. Usually I like someone to come with me when I go out though; I get lonely enough at home as it is!

Being sick sucks! If I could fix it I would. But I have had to accept what’s happened to me and find ways to get by. The pain, the boredom and the loneliness are the worst parts but I try my best to find ways to cope. I think there are some good parts about being sick. Like I am much closer to my friends now, and I have lots of time to think about what is important to me. I don’t waste energy on things that don’t make me feel good and I don’t think most people get much chance to do that.