It’s supposed to be the awareness month for the genetic disorder I got diagnosed with last month.
A zebra is used in a lot of the promotional material because of the saying around hoofbeats, but I really don’t connect with equines, despite a lingering passion for mlp:fim.
I’ve been doing a lot of thinking at odd moments. There were a lot of negative labels bandied about as a child that have seeped into my subconscious, that I have come to regard as defining personality defects. Things I need to work on, to improve. To be that mythical ‘better’ woman that we always end up chasing. Laziness was a big one. But EDS symptoms fit in so well with why I was always so ‘lazy’ – from being slow and clumsy in PE (weak unstable joints, pain, and poor proprioception meant I hated it and I tried and tried and it was so fucking hard and I would flail like a dying starfish) to always feeling tired (fatigue is such a large factor that people are often misdiagnosed with chronic fatigue syndrome. Also, autonomic dysfunction could’ve been responsible for the fact that I have vivid, movie quality dreams ALL NIGHT LONG and do not wake up refreshed, this is apparently common in EDS sufferers. Go figure).
So instead of having an unpleasant personality trait, I have been battling to do a normal day’s activities with an abnormal body. Of course this is going to be tough! And that’s not to say I’m perfect – I’m pretty good at procrastinating, to the point where I started to use ‘the fear’ strategically to get stuff done. Fellow procrastinators will know what I mean. And it’s not pretty. But that’s not the same as lazy. Oh, and I don’t always keep my temper, and end up shouting (I say shouting, it’s actually just speaking much louder than normal. Proper shouting would actually kill me because of the migraine (constant, daily, probably a gift of EDS)). Now you know all my deep dark secrets.
For years I have put up with my shitty unstable ankles (thank you for breaking my feet btw, on a flat path in flat shoes), my horrible, concrete grinder knees (I gave in this year because I was starting to loose mobility as well as being in pain i.e. I couldn’t get on and off of the loo. Physio diagnosed Chondromalacia due to my kneecaps being in the wrong place since I was a teen, I’m 33), my locking painful elbows (they won’t unbend unless I hit them), being dizzy to the point of falling over when I stand up (this one has got better because my blood pressure has increased because of the migraine. Ha. Ha. Ha.), painful cricks coming from my neck, my shoulders sliding in and out of the joint socket (honestly thought I was imagining it), my hips popping in/out painfully (the noise is disgusting btw) and annoyed the doctors when I dislocated my lower back – in my sleep. On my nice firm bed. Just woke up with it dislocated. Still took 3 days to actually go to the doctor (didn’t even take time off of work. Because I am an idiot).
A lot of the above I simply ignored for a very long time. There’s lots of stats about how long it takes for EDS patients to get diagnosed because clinicians aren’t expecting to see a genetic disorder in daily practice (hoofbeats, horses, zebras) but in my case once I raised it with my GP he referred me to a rheumatologist that visit. Sure he wrote a slightly sarcastic letter full of quotation marks that read completely as if I was a hysteric with Google diagnosis that needed to be pacified, but it doesn’t matter because the consultant saw me, and diagnosed me. Was also completely respectful and that’s also a-ok. The criteria have a 93% sensitivity and specificity too, which is really good. But… back to taking such a long time, well the Nile isn’t just a river in Egypt is it? For a lot of it I assumed that it happened to everybody, pain was such a ingrained part of my life I didn’t question it, for other bits I thought they were the result of my ‘laziness’ and if I was fitter I’d somehow stop being such a clumsy nobber (I’m about 5’11” and a a size 14/16 so there is a lot of me to flail about in a dangerous fashion). If it wasn’t for mr evil fucker migraine I’m not sure I would have pushed for this right now. But it really helps to have a reason for the migraines, especially when I keep getting told not to take painkillers to avoid rebound headaches.
Rebound headaches aren’t why my migraines started on a daily basis. I only took NSAIDs a few times a month, usually the first day or two of my period. Since they started, I haven’t taken any. That’s since June 2014. What I’d really like to take is opioids, but they are baaaaaaaaad. But oh so good. Now there is some talk of pain relief for my joints, but the few drugs mentioned so far are ones I’ve already tried and not been able to tolerate (plus they did fuck all) for the migraine. Headaches are associated with EDS – it’s like the gift that keeps on giving isn’t it? My skin isn’t as bad as some people’s but I’ve been given worse wounds by medical tape than it was trying to cover. It’s beautifully soft though. I’m waiting for my digestive system to fuck up. As you already know my darkest secrets you might as well know that I have to fart constantly, there’s a (mercifully short) list of food I can’t eat else I’m stuck on the loo for a bit and after a set of weird gastroenteritis bouts (I had hospital trips for them, unpleasant) instead of getting hungry if my belly gets hungry I go straight to nauseous and then diarrhoea. But all of that is really, really manageable.
So. Now that I have blurted, consider yourself aware. I am tired. Not lazy.