Wednesday was a familiar unfamiliar day. It was a ‘Bed Day’. I slept and slept and seizured and when I woke a couple of times my hands were not working and I was weak and floppy and couldn’t type and write. Familiar was it being a ‘Bed Day’, unfamiliar was the seizure and floppy. It used to be familiar. I used to be 4 times a week. Or even every day. But it’s not happened in ages. Not that way. I was wiped out.
It was awkward because I had promised my Dad I would do house-related things with him*. And I could not. And the previous day I had been energetic. But that’s exactly the point. The previous day I was energetic – and stressed. Monday I was energetic, busy and stressed while the weekend was spent writing a letter to my GP and filling in the ESA50. Ah, I see. Stress and long, long hours writing on Saturday and Sunday. Rush to see GP for new Fit-Note and prescription** on Monday, to get Fit-Note copied and posted, still on Monday. Tuesday – letter from Maximus with a WCA*** appointment on a day I can’t make it arrives, I panic, I calm, I contact Advocate, I go to volunteer, we have a dramatic day, I can’t sleep. So Wednesday is a crash. Ah. Hindsight 20/20. So I know why Wednesday was a crash and burn. Why I finally got up at 11.35 pm. I was back in bed in 2 hours.
I have to change my WCA appointment, but I have to make sure my Advocate will be available. She wants me to change the venue from Neasden to West Ealing. I don’t know if Maximus will do that, but I can try. The last time she was going to help me, she could not make it to Neasden – I shall use this in my argument.
My being floppy made me think. I have been reading fellow EDS blogger Ren ****and she has inspired me to re-visit my EDS. I was diagnosed over a decade ago, when few GP’s or even Rheumatologists had heard of Ehlers-Danlos Syndrome. Or if they had they’d seen 1 person or read 1 paper. Now EDS is quite well known – there have even been TV soap story lines about it, and it’s appeared in national newspapers frequently. It’s a complicated disorder and it’s largely invisible. Unless you have it, and then you can see it everywhere… However, I decided to see what the web had to say about it. To see if I still matched the criteria for the condition etc. etc. Of course, American medical sites have more to say than UK ones. Why ‘of course’ – because when you pay for your medical treatment, or when you are paid and can be sued for mis-diagnosis, it makes sense for you to be on top of rare conditions – as both patient and doctor. The UK is less clued up. The various charities and support groups are clued up, don’t get me wrong – but the NHS is not. It is slow and it does not see the whole problem. The Rheumatologist sees the joints, but it doesn’t just affect the joints. UK doctors see each part of you, in the US, they treat the whole, because it’s easier for specialists to communicate and work on one patient there – easier and it makes them more money. Here, every form of treatment is rationed, so if you get to see a Rheumatologist for EDS, you most likely won’t see a Nutritionist, or Immunologist for it. You may see them for something else, and the EDS will be noted. But that’s it. Like my ENT guy not knowing I had EDS, even though it’s on my notes. He also didn’t notice the big red stamp on my notes telling him I’m allergic to Penicillin…. EDS affects the soft tissues of the body. That’s a large percentage of your whole. All joints (including ribs), all organs that contain collagen (theoretically not your brain, but more of that anon.) – so that’s all or near all your soft bits – muscles too. Eyes, to throat, to arse, to feet. Skin, nails. Everything. If affects how you bruise, heal, scar, grow. And breathe. And feel. Literally. You need more Anaesthetic. More time to mend. Less trauma to break. You’re more sensitive to touch and perhaps to heat and cold (depending on which version of EDS you have – yes, there are variants).
When I was diagnosed (before iPhones) there were not that many variants and I was labelled mild Classic. Now the diagnosis is more nuanced. However, that nuance is because of people diagnosed the old school way. I remember being in a group of people who had a Maxillofacial specialist in with our Rheumatologist consult (at the time I was ‘under’ Prof. Rodney Grahame at UCH) and she wanted to look at our palates. Now such an exam is part of diagnosis, when it used to be theory. And it’s this that brings me back to my beginning: re-examining my EDS. Currently I would explain to people that it is part of the cause of my chronic (un-ending, unquenchable) spinal and neck pain, my lax ankle, flat feet, painful, lax knees, floppy wrists, exhaustion, tight hips, my frozen ankle, Keloid scarring, ‘velvet’ skin and extreme fatigue. It causes me to limp, move slowly, drop things and be unable to run. But EDS charities and new medical descriptors also now tell me it could be responsible for my chest pains, erratic blood pressure and temperature, frequent ‘brain fog’, acid reflux, IBS and digestion problems, dizziness, anemia, vitamin deficiency, Scoliosis and so much more!
Why am I noting this? Well, because it’s important. It’s important that I don’t forget that EDS is a big thing in my life (literally – I’m 6ft and every centimetre is affected) and that all the newly developing problems I’ve had in the last 8 years might be connected. That the development of an illness or medical condition does not stop with diagnosis. Just because you know what is wrong and you have a name for a problem, you should not stop taking notice of it. Even if that notice only means checking NHS information about it, or a Charity Information page. As you change, it changes – research moves on, and the best way to deal with such a problem is to keep aware of the movement and the changes.
*We have too much to do to the house. I have no experience in furnishing anything, or choosing expensive stuff for the home. And my Dad has no experience of trying to furnish the house without my Mum and with someone who knows nothing and gets exhausted.
**I wanted to up my dose of Antidepressants, but the GP said no. I have to have my prescription changed by a Psychiatrist. I hope the new Psych. I see next week will understand and be sympathetic to my problems. I’m quite worried as I’m not sure how well I’ll get on with a male Mental Health Specialist.
***’Maximus’ replaced ‘ATOS’ – they now do the medicals for the DWP – the Work Capability Assessment (WCA) – a physical means test. I think that ‘Maximus’ is an amusing name. It makes me think of Gladiator, but also of a brand of jumbo condom. It’s very aggressive and kinda inappropriate for a group dealing with wonky ill people. I always think of this song, by a Polio survivor: https://www.youtube.com/watch?v=6isXNVdguI8 – I am Spasticus!
****https://brokendownbody.wordpress.com/ The devleopment of the diagnosis and understanding of EDS is also down to people like Ren who push for help and care, who keep chasing up doctors and who blog and spread information. Ren is in Scotland, I am in London. At one stage, the only place people in the UK could get diagnosed with EDS was London and Liverpool, so too Scoliosis – it was UCH and Alder Hey if you were a kid.