Firstly, for anyone new, Ehlers Danlos Syndrome is a genetic connective tissue disorder that affects the collagen in my body. I’m hyper-mobile, my joints dislocate and sublux and it hurts. I joked on Facebook that I’d skipped bendy, moving all the way to floppy and as much as it was tongue in cheek, I fear that it’s true.
I wake up in the morning generally pretty tired. Some nights I’ve fed Isaac 3-4 times in the last 6 hours, which is not exactly conducive to rest. Add in a nightmare or two from Amy and night time leaves me feeling like a yoyo.
The first thing I do is flex my ankles and make sure my feet are all properly in joint. Then, I roll on either side and flex my hips to make sure they are in completely too. I can’t just jump out of bed, otherwise I’ll fall over pretty fast. Before I was diagnosed, I did these things without actively thinking about them.
This morning I woke up with a subluxed shoulder. Actually, I’m not confident that it was my shoulder joint, I think it might have been my shoulder blade or a rib underneath of it. Breathing in hurt and I couldn’t move my elbow away from my side without gasping. Carrying Isaac was a little bit of a nightmare as it was my baby carrying arm that was playing up.
I poked at it a bit, wiggled it around and went pretty white from the pain. Eventually it went back into joint, but not before I’d considered taking the strong pain killers in the fridge. The only thing stopping me was that I hadn’t taken them before and the last thing the kids needed was a mother who was stoned as well as half broken.
Lots of mornings I wake up nauseous. It feels a lot like morning sickness actually. I change colour from green to white and then off to grey as I stumble about the house making breakfast for the children. Sometimes I start to feel better after a cup of tea, other days I’ve just got to wait it out until the afternoon when time works it’s magic. The mornings when I don’t wake up nauseous are lovely, however I know that I’ll probably be going to bed with a bucket and a cold face washer that night. The nausea hits every. single. day. I take Pramin for it (Maxalon) and it helps me sleep through the worst bits, however if I took a tablet every single time I felt queasy I’d go through a prescription a week.
So I suck it up and eat crackers.
I can’t hold a pen to write anymore, as it hurts too much. Instead I type. I can’t turn on my water taps easily, I have to use two hands. This makes bath time for Amy, uh, interesting. Sometimes she has to make do with baby wipes until I can get Nathan to turn on the water for her.
Shaking my hands after washing them results in dislocations through my wrist and fingers. I dislocated my finger the other day undoing the milk carton to make myself a cup of tea. When I was in the hospital with Isaac, my pointer finger refused to go back into joint and stay there, popping in and out for a good hour. I was seriously considering asking the nurses for some tape so that I could tape it back into place.
I tried to lift my big mixing bowl a few days ago and my wrist just sort of went flop and fell apart. Nathan saved me from dropping everything on my foot, but still. I’d like to be able to hold onto things for just a little bit!
My blood pressure is low. 100/60 or 90/50 depending on how much work I’ve done in getting to the doctors chair to be checked. On days at home I suspect it’s lower as I get dizzy and faint easily, even when already laying down.
There are plenty of other things too. I don’t heal well and I scar terribly. I bruise over nothing and my legs look like I’ve been beaten. I get stretchmarks in the stupidest spots and they just keep appearing and getting bigger. My skin tears and stretches. Even though I’ve lost all my baby weight (not necessarily a good thing for me) I’ll always have a ‘muffin top’ because of my skin being stretched out during pregnancy. I’ve got to learn to accept that.
The Internet is my saviour. Through reading about Bendy Girl’s everyday issues and Shannon’s diagnosis of EDS, it prompted me to ask my GP about it and when he shrugged it off, ask for a referral to a geneticist.From there I’ve discovered Achelois and Pop and Ice, both of whom deal with EDS.
And here we are today.
I’m not complaining; far from it. I’m simply stating facts as they pertain to me. I’m having to learn to ask for help in simple everyday things and it’s so hard. I’m independent dammit, I don’t need help weeding the garden or stirring dinner or brushing my hair. Only I do and it’s hard to accept.
So I’m writing this. Mostly to get it out of my head, but also so that I can refer IRL people to it if the need arises. EDS is an invisible disability and not enough is known about it in the wider medical community. I’m hopefully going to be working to change that down here in Tasmania.