Living with any disorder is a bit of a wild ride, living with a mitochondrial myopathy has been a very odd experience for me in all honesty. I have never felt quite able to live a ‘normal’ life, I can keep up with a certain amount of rest and pain management but I have never been able to run on empty for days on end, it makes me sick. I am very lucky that the strain I experience is mild, only effecting my muscles and not my organs which I am so grateful for but I guess living with any kind of disorder and knowing you wont have a ‘normal’ life is always going to be a bit of a pain in the arse.
I was born with Benign Cytochrome Oxidaise Deficiency which is a mitochondrial myopathy in short, its certainly easier to spell. It is referred to as lots of different things but in short it means my mitochondria don’t convert food into energy as effectively as they should and then my body struggles to remove the lactic acid build up on the other end once it has been produced by my muscles. I spent time in hospital as a baby once they noticed something was wrong and I had a feeding tube amongst other things to help me live a normal life.
This all being said, I am lucky that my life has been relatively normal compared to some and I am grateful. I also most definitely took this for granted when I got pregnant. I knew going into this pregnancy that there would be a one in four chance of my child being effected with what I have in the same way, or maybe even worse. We just do not know. It’s very rare so there isn’t m,uch known about it, what we do know (and what I didn’t know when I got pregnant) is that I am more likely to experience pre term labour, gestational diabetes and pre eclampsia amongst other delights and this was a bitter pill to swallow. My body isn’t used to housing and growing another human either meaning my pre pregnancy abilities were swiftly cut back recently putting me out of action for a good few days to rest because my body is struggling to grow a human and keep up with my previous lifestyle.
All in all this is a scary experience, the only thing on the internet about this is clinical talk that I don’t understand so if you are or know someone with a mitochondrial myopathy who is thinking of pregnancy, is pregnant or has been pregnant, lets chat. It’s quite lonely sometimes and I know the struggle.
There are lots of things to think about but I am so so grateful to be pregnant, even if it is kicking my arse. I am worried about all the outcomes but if I get a healthy, happy baby boy at the end of this, it will all be worth it. Every single moment.
Court Doesn't Do Cosmetics Anymore 