When I was very kindly asked to write this piece, I did think – ‘Am I the right person?’ I’ve really never thought of myself as ‘chronic’ before. To the point where I actually looked it up, just to make sure I was.
“A chronic condition is a human health condition or disease that is persistent or otherwise long-lasting in it’s effects”
I live with a few conditions, but I’ve never thought of myself as suffering with them to be honest. I was born with Cerebral Palsy on the left hand side of my body. I know no different. This in itself makes it easier to deal with. To me it is ‘normal’ Ask me if I could change it tomorrow, I would honestly say no. In my mind, there is nothing wrong with me. My balance and motor skills can be a bit dodgy sometimes. The more stressed , tired or agitated I am, the worse they get, but generally living with it is easy. Explaining it to people sometimes is the hard bit. “ I would not have guessed, really, you have cerebral palsy, but you are SO capable!” is the response I get from a lot of people. They mean well, but I often wonder where they got their slightly misguided vision of Cerebral Palsy from. Bits of my body may not work 100%, but my brain works perfectly thank you. As do many people’s with CP. The fantastic comedian Laurence Clark has a PHD in Computer Science and his wife Adele who also has CP is studying for a Masters degree. You get my point. There is still a long way to go in changing people’s perception of disability sadly. The more people in the public eye with disabilities, the better I believe. You have to start with yourself if you want to change attitudes though.
10 years ago I was diagnosed with Polycystic Ovary Syndrome, and five years ago I was told I also had endometriosis. A double whammy when it comes to a woman’s fertility. There are no cures as such. I had been told ‘Well maybe it’s for the best, you know, being a mother with cerebral palsy, probably not a great idea’ Yes; someone actually did say that to me, in this day and age. To be honest, I had always been a bit ambivalent towards mother hood. My own mother died when I was nine, and this had a huge impact on me and my views on parenting. Even before that though, I never had desires for a big white wedding, nice house and lots of babies. My ‘toy’ family would be dressed up and sent off on a pretend plane to have parties, in Barbados, or Italy, Spain….or New York. Motherhood never came into it. An exciting and adventurous life did. [I still find it interesting that even then at eight years old, I didn’t imagine you could do both]
However when I was told 6 months ago that one of the only ways to stop the bleeding, pain and constant tiredness was to have a hysterectomy [whilst keeping my ovaries so I didn’t go through early menopause] I burst into tears. It frightened me immensely. I had had all the operations, laser treatments, hormone tests, and the marina coil. It’s still all there and affects so much of my everyday life. The constant extreme hunger caused by PCOS and my insulin imbalance. Constant bleeding, which frankly is just plain annoying and does nothing for your sex life. I’ve had some very patient boyfriends. Also excruciating period pains and flooding at any given moment. Not to mention extreme tiredness, mood swings [although I was told they really aren’t that bad, I think he was just being nice.] I AM getting a bit fed up now, and at thirty nine my chances of having babies regardless are slipping away. I’m honestly not sure I want children, but I absolutely hate the idea of the option being taken away from me in one fail swoop. How am I coping with this? By asking myself some pretty tough questions. Without a long term boyfriend at the moment, the option of being a single mother, is well, frankly NOT an option. I just couldn’t cope on my own. That IS the reality. So do I wait around for Mr Right to turn up? Put off the operation, and put up with the pain and the bleeding for another 3-4 years. I’m really not sure what I am going to do. I do know that I have a great coping mechanism, mostly to do with the strength and sense of humor that my parents instilled in me from a very young age. It’s fine to feel frustrated and blue about things at times. That is completely normal. But a person cannot run away from things they cannot change. So things need to be faced, and decisions need to be made.
I will do it. Just maybe not this week. ;o)