It really hasn’t been a good day today. Partly I’m afraid to say down to my lack of being able to deal with things and spoilt behaviour.
I don’t know if you can understand this… when your life is controlled by your illness, i.e. there are only so many days you can do things, so many hours in those days, you have to ask people to help you and you don’t see many people and so on, your life becomes a small bubble and you become very insular and small things become important. I used to have a busy career and could think on my feet and deal with emergencies. Now I can barely stand on my feet and can’t deal with the phone ringing.
I’m lonely and I miss everyone. I haven’t seen a member of my family for four months and I haven’t seen the friends I’ve known for twenty years in over a year. I have only a couple of friends in Northern Ireland and I don’t really know them all that well. So I never see anyone. I used to have an active social life but I can’t do anything past the afternoon I get too tired to I can’t even go to the pub or for a meal with my husband. I am lonely, frustrated and bored.
Today, it was the nicest day it has been all week. We’ve had snow, gale force winds and torrential rain and today we had sun. I asked Malcolm if he would take me to the forest but he didn’t want to go out, he had other things to do. I really took it to heart. I feel like this house has become my prison so suddenly Malcolm was my prison warder. I can’t go out unless someone takes me so I felt helpless and not in control and upset. So I took to my bed and declared I was going on hunger strike until people understood what I was going through a bit better and took me out when I needed to. I know that seems spoilt and over the top but it really got to me that I was trapped in the house and couldn’t go out.
I didn’t eat or drink anything for ten hours and Richard came home and tried to be an intermediate. I sobbed telling him I couldn’t live like this anymore, it wasn’t a life worth living, being so dependent, being so ill, being so depressed with being ill. That upset him because of course he loves me.
It kind of all got sorted and I drank some water and had a sandwich but I am desperately unhappy and fed up of being ill. Ten years it has been like this, do I have to put up with this for the next twenty, is this my life?
I also don’t like acting like a spoilt brat but when your whole world is in one room most of the time things get out of perspective.
This must be one of the worst illnesses to have, doctors ignore it, there is no treatment and no one understands it.
I hate it.