May is Ehlers Danlos Syndrome Awareness Month. Last year I bombarded you (or at least I think I did) with posts about all sorts of aspects of EDS and how it affects us and other families. This year I had the best intentions to do the same. My head has been full of ideas, my inbox full of requests and my Facebook feed full of fine examples of how other people are informing, educating and being pretty damn amazing. Yet here I am on May 14th, 2 weeks in having done nothing publicly. The reason being… my EDS kind of got in the way.
I guess that’s the most obvious of things to say about EDS. You can have really, really good intentions – to do things, make things, volunteer for things, achieve things or just finish off what you started. Some days those intentions can be to get out of bed and shower. Other days, changing the world with your superwoman pants hoicked up to your armpits is (in your mind) more than achievable – perhaps whilst whipping up a couple of dozen cupcakes at the same time. But then your EDS thinks (obviously it doesn’t have a mind to think with but I suspect most people with it have given it a personality at some point) – ha, no *evil cackle* I shall be ruler of today and you will only be able to do … nothing/a tiny fraction of what you want to/half of what you want to/something but not finish it etc
With some clever pacing (something that Occupational Therapists talk about at great length but have no idea how difficult it is to put into practise) you can override the thoughts of your EDS and achieve more than it or you thought possible. But it’s hard. Really hard.
My stupid baked bean tin injury is what has thwarted me. It hasn’t healed. By sheer misfortune the steri-strips used to close the wound were glued into the wound not over it. The pain response has been uncontrollable. Despite sterile dressings, that evil little bacteria staphylococcus decided to pay a visit. Removing said glued in steri-strip resulted in all sorts of problems, tissue grew in the wrong place, nerves went bonkers and it still wouldn’t heal. They cauterised it (no pain relief) and it still didn’t close properly. The EDS just wouldn’t let it close – the skin is too fragile and the healing response my body had made was just, well, wrong. Very EDS like, but wrong.
I have managed to spread the word a little about EDS though. The two lovely nurses who were changing the dressings for me last week had never heard of EDS. This wasn’t at a little hospital or clinic, but at Mount Vernon Hospital – a specialist centre for burns and plastic surgery. We talked for about 20 minutes about EDS, how it works, the genetics, how we share a diagnosis but don’t share identical symptoms. How it affects us all in different ways. They shared with me their skill and compassion as I sobbed through the dressing change.
Raising awareness is a two way thing, I guess it’s not just about our good intentions to share our knowledge and experience, it’s also about inspiring those that care for us, as well as those we talk to and work with to share that knowledge in their roles and with their colleagues. Not just in the medical profession, but in education, sport, social care and everything else. EDS may be getting in the way of me blogging for awareness (typing with a very bandaged and very painful finger is hard, as is typing when you’re on some hard core pain medication) and it’s having an extremely good try at delaying my recovery, but I hope, even if it’s through this one post and that chat at Mount Vernon, I’ve done my bit.
If you think I haven’t, ask me the questions that you’d like to know the answers to and I’ll try my best to answer them