There seems to be an ‘awareness week’ for everything now – and as such I am loathe to write post after post about Ehlers Danlos Syndrome because the blog would become nothing but that. However, as I am in the midst of a particularly evil flare of my EDS I thought I would put fingers to keyboard because if I don’t and you just saw me in the street, you wouldn’t know what my body is doing to itself at the moment. Add to that, this quote from the world expert on EDS Rodney Grahame:
I would say that I’m ‘used’ to living with an invisible illness – that unless I have a limb in plaster you wouldn’t know there was something wrong. It is my ‘normal’; but my normal is very different to pretty much every other person I know with EDS’s ‘normal’. It presents so differently – it affects us in so many different ways and even when you discover you share a similar issue, how it affects us can be poles apart.
As Prof Grahame says though, EDS is still invisible to huge numbers of those within the medical profession. Those who treat us on a daily basis – from our GP’s to lead hospital consultants, dentists, opticians and nurses. Those who do know about it have knowledge that varies from sketchy to ‘expert’ – but with that expertise only gathered from a single patient who may (will) have presented completely differently to me. Add the fact that EDS can be called a variety of different names, some of which are perceived as being more severe than the others and the patient in the middle has to fit into this blur of confusion – somewhere.
At the moment I’m faced with a choice… I’m going to try and explain how I am today and the options I have:
- Today I have extreme pain in my left arm. I don’t know whether it’s connective tissue based or due to a problem with a joint – my gut feeling is it’s both. I can’t lift, twist or extend my arm without pain that makes me feel physically sick
- My pelvis is out of alignment causing the pain and grinding of the two parts of it that is generally associated with Symphysis Pubis Dysfunction in pregnancy. I can walk but it’s not comfortable
- My arm is so sore that my neck hurts
- Because I haven’t slept properly my eyes are struggling to focus
- I haven’t slept properly for weeks. If I take pain killers at night I cannot guarantee I will wake if the Cheetah Keeper has a bleed. Therefore I can’t take pain killers. Therefore I am exhausted.
- My right arm is doing well after the surgery last year but I still have to use my left arm to do some jobs around the house. Except I can’t at the moment so my right arm aches.
- Standard painkillers don’t work. If I want any form of pain relief, morphine is the only option.
- Morphine makes me groggy.
- I am self employed with 2 big projects on the go – which both have deadlines and both of which I started when I was in a far better state than I am now. EDS doesn’t really give you any warning of when it’s going to flare.
- If I take the morphine I can’t work and that doesn’t pay the bills.
- All the ‘normal’ household stuff needs doing (I do have help but not all the time!)
- I have two children with additional needs and the education system is failing them massively at the moment – I need to be their advocate, cheerleader and most importantly, their mummy.
- I took a day to myself on Tuesday but was so wiped by that I fell asleep during the day yesterday – not getting the work done.
- If I rest, the pain can be even worse and the frustration of getting nothing done is immense.
Could you tell any of that if you passed me in the street? As I dashed around town yesterday morning picking up prescriptions, chasing referrals, buying milk and Pudsey ears for Children in Need?
I doubt it – all is not what it may seem. I have no idea how long this flare will last – whether it will need more surgery or whether, with a bit of help from my osteopath, everything will clunk back into place and settle down.
We shall see… what else can I say? Incurable, invisible, unpredictable and inconsistent. Ehlers Danlos Syndrome isn’t just about being bendy, having stretchy skin or experiencing frequent dislocations. I hope this post has explained a little bit more about what it’s really like – for me.