On the whole, I deal with my chronic pain and the problems that my pain causes, pretty well. I have good coping mechanisms and methods of ensuring I can get out house at least once a week. I have people I can talk to and have fun with and I have my creative outlets that fulfill my sense of purpose. The trouble is, about every 12-18 months I tend to get an overwhelming sense of futility. I look at my life and all I can see, every day, disappearing into the distance, is the grinding unending pain that makes me a captive inside my own body.
All I can see is a drug fogged brain, being held back from achieving all that it could, and a body that does not fulfil the needs of anyone. I look inside and I see is a great big black hole where my life should have been. I'm 38 and I've been ill for nearly 10 years. I look at my friends who have careers, or families or both. I look at my partner who can walk into town if he chooses on a nice day, but often doesn't because he feels guilty about leaving me behind.
I look at the plans we have made for a wonderful holiday in Cyprus and all I can think about is how much I resent having to make all these additional plans for coping, so we are able to enjoy ourselves a bit more than usual. I resent that we can't go on the adventurous holidays that my partner went on before we met, when he travelled to the Amazon, India and Nepal and round Vietnam staying in villages that saw a white face about once a year. I wanted to be able to join him on his adventures, and I can't, and probably never will.
I had such hopes and dreams when we first met. I longed to travel with my partner, to go to live music events, getting muddy in fields at festivals and going on adventures without plans and having no purpose except to explore and learn and enjoy. We started on this exciting life until 6 months into our relationship when everything started coming apart. Our exciting life was put on hold when I had my ectopic pregnancy. A few months after that, we went on our first holiday, just a last minute package deal to Greece, but it was wonderful. We weren't able to do all the things we wanted to, because I still wasn't properly well, but we thought it was the start of our life getting back to where we wanted it to be. But it wasn't. Things just started getting worse and worse and they never really got better.
I look back at all the dreams and hopes I had during that first year together and I weep because they were never achieved. I feel that as well as letting me down, my body has let my partner down. He never had his travelling companion. He has always had to be my support and guide. He has to walk down pathways before me to see if I can manage to get down them in my wheelchair. He has to push me over bumpy ground and go out to get supplies when I can't leave my hotel room because of the pain. He daren't leave me on my own for too long if he goes exploring on his own, because he worries that I might not be able to manage on my own in a strange place. I look at all the restrictions my body puts on both of us and I hate it so much. I hate that it won't do what it is supposed to do. I hate that I can't escape, not even for a day, and my partner has to watch me fighting to keep my head above water. He has to watch my pain and my struggle to stay sane through the dark times of resentment.
I know that my sadness and hate will leave me, eventually. I don't know how long it will take me this time to climb out of my pit of despond. I just know that I have to keep getting out of bed each day. I have to keep getting dressed and washed. I have to eat and talk to people when they talk to me. I have to pretend everything is ok until it becomes ok again. Sometimes, you just have to fake acceptance until it sticks.