If there's one thing that I've learned from my Ehlers Danlos journey is that no two zebras are alike. We all different, sometimes VERY different. So that led me to question why is the advice always the same? We might have the same genetic cause for our symptoms, defective collagen, but how that affects us can range from having joints so loose they are permanently hanging out of their sockets, to muscles working so hard to keep joints in place that they are permanently in spasm. There are people who can live a relatively normal life and others who suffer life limiting complications. There is no one size fits all solution, so why do medics always give the same standard advice?
I don't envy the doctors dealing with us zebras. We have so many complex problems that it's difficult to know where to start, so most don't want to get involved. Even consultants discharge us back to our GPs because they don't know how to deal with us.
I went to Stanmore's rehabilitation course hoping for some understanding but what I found what the same generalised advice that didn't really fit my experiences or capabilities. I didn't really learn very much apart from that I'm much sicker than I thought I was. I thought I could manage and I did manage to a certain extent but by the time I'd got up, washed, been to the restaurant for breakfast and made it to stretch class I was done in, and the day hadn't even started. And the staff wanted me to do MORE! I gave it my best shot, buoyed by stories of people arriving in a wheelchair and walking out three weeks later practically cured, but the opposite happen to me.
Pacing will allow you to do more, they said. A social care package is not the answer to all your problems. If you can't do all the ironing in one go then iron one shirt at a time. This would be good advice if getting the ironing board out didn't cause me so much pain that I wouldn't be able to iron a shirt. They didn't consider how a social care package actually allowed me to pace.
When you're having a flare up don't stay in bed all day, get up, do your physio, pace your activities. For me a flare up is when I can't get out of bed! The alternative to staying in bed is face planting on the bedroom floor because I haven't got the strength or the energy to walk to the bathroom.
Do pilates, it's good for you. Done that, made me worse. It was really cool but holding pilates poses when you have muscle spasms makes you have more muscle spasms. After three one to one sessions I was in severe pain for three months. Not exactly a solution. What about tai chi? For someone with POTS who can't stand without walking aids? It's something I've always wanted to try but my shoulder is so unstable it goes clunk just drinking a cup of tea.
If you think physio is going to make you worse then that's called catastrophising, according to the rehab handbook. It's negative thinking that you need to change. Really? So if you think that hitting your thumb with a hammer is going to hurt you need to change your negative thinking? Will that stop it hurting? Hmm, perhaps it doesn't always work like that.
Chronic pain is not caused by physical injury. Any injury will have healed after a few weeks so it's down to faulty pain signals or an illusion because you're overreacting to those signals, like the Lorimer Moseley video. So when I sprain my ankle and it still hurts three months later is it because of 'chronic pain', my nerves sending out the wrong signals that the brain interprets as pain, or is it because my ligaments are too loose and I spray my ankle almost every day so it never actually healed? To me that makes a whole lot more sense because I don't overreact to pain and I'm not afraid to move because of the pain. Doing stuff just makes me hurt more. I need to find a way of moving that doesn't hurt instead of being told it's all in my head.
I told the Stanmore team that being in a swimming pool triggered severe symptoms but it was mandatory to have a pool session. I love the water and I trusted the staff so I went in the pool, I spent a few minutes in the water and it triggered a severe flare of symptoms. I was frustrated that I had to make myself ill to make them believe what I said was true and not just 'negative thinking'. I was even more frustrated when the flare up became so severe that I had to leave the course half way through. I felt like I had failed but on reflection it was the team who had failed me.
I have EDS, I know these things help some people with EDS but unfortunately they don't help me. I need something different but there isn't anything different.
Something has to change.
I have tried to do things their way but I didn't fit their solutions so now it's up to me to find solutions that fit me. I know I'm not the only one, like I said, we're all different but it would be good if the medics started to listen to the patients rather than just handing out standard advice due to the name of their condition. Research needs to be done into why we feel pain so we can learn what to do about it rather than just expecting everyone to do physiol, take painkillers and learn to live with it.