Ehlers Danlos Syndrome

I picked up a pen today to write in my journal. The further I got down the page, the worse my handwriting got, until at the very end, my hand sort of collapsed and I gave up.

I’d written maybe 40 words total.

I spent the next hour massaging various bits of my hand back into place, while clutching it to my chest. It’s still sore.

I start physiotherapy tomorrow. The rational side of my brain knows that it will be fine and that we will get things moving for some braces for my worst joints. The irrational side is telling me that I am faking this, that I’m not really sick, that I don’t have anything wrong and to buck up and grin and bear it already, you faker.

Seven years of being told by medical professionals that nothing is really wrong has that effect on a person.

It’s also a shift in my perception of myself. My wrist needs bracing and no matter how I go about it, a wrist brace will be a very visible sign of something ‘wrong’. I’m not sure how to handle that. Making the invisible visible with external aids.

I’ll still be me. I’ll just be me with accessories. Ehlers Danlos Barbie; now comes with joint braces and a side of pain killers. Walking stick sold separately.

I sat down to type a list of joints that dislocate and sublux today. After I’d listed just about every single major joint in my body and some minor ones too, I gave up. Instead my bit of paper now says most of them. fix me.

Tomorrow.

***

I had Pink playing on the computer as I pottered about the house yesterday. Amy started singing.

So what, I still a rock star, I’ve got my fuck you…

[actual lyrics: So, so what, I’m still a rock star, I’ve got my rock moves… I see where Amy got confused]

I left the room.

I nearly wet myself laughing. I laughed so hard I spat my cup of tea all over Nathan and the clean washing. I’m glad I wasn’t in front of the computer.

She’s brilliant. Funny. Frustrating. Exhausting.

She’s almost three. Where did that time go?

***

Nathan went and got my camera out of the bedroom this afternoon.

Honey, why won’t your camera turn on?

I grabbed it. I fiddled buttons, I switched things on and off. I got steadily more stressed and nauseous.

You got it out of it’s bag? On top of the cupboard? I DON’T KNOW! It was working when I used it a few hours ago! What did you DO?!

I nearly died.

It’s battery was flat. A quick battery change later and I was breathing easily again.

Please, don’t do that to me again.

***

Oh and more photos. Because I’m enjoying sharing them. Suck it up.

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I knew it was coming. It’s actually been creeping up one me slowly for the last 6 weeks or so, but I’ve been pushing through it. The kids need food and the floor needs vacuuming because honestly, while I can look the other way when Isaac eats a tissue (clean? dirty? ummmm, you tell me…) I can’t ignore him trying to chew his way through Amy’s left over cereal she spilled (it was dry cereal. So sue me) as he gnaws on the dogs leg and we all sneeze our way through the dust.

I’m crashing.

The pain in my hands is getting worse. I’ve been spending an awful lot of time wandering around clutching alternate wrists and rubbing them. Panadol has been disappearing like lollies as I just get through today.

Horizontal parenting has been my friend as I need to lay down right now. Isaac wiggles all over me while Amy jumps on the both of us and we all lay in front of the fire while I pray no one needs anything because standing up might make me pass out.

And today, I think I’m done.

My blood pressure has been so low that by the time I had the kids in bed, I fell onto the couch and told Nathan I was dying. Heh.

Now Nathan. I love him, but he can’t read my mind. Terrible flaw in a man if you ask me. I have to actually (GASP) tell him exactly what I need to make me feel better. So I flopped all over him with my feet higher than my head to prevent me passing out and requested the things I need to feel better.

A sandwich with the left over roast lamb. Lots of salt to get my blood pressure back up. And salad dressing because I wanted to pretend it was my go-to cure of cucumber, salt and vinegar.

A pillow to raise my feet until I stopped feeling like my head was just going to float away…

Oh and some panadol. And a cup of tea to wash them down.

Surprise surprise, if I give the man concise directions, he’s pretty awesome. I think I’ll keep him.

So crashing. Everything hurts and I can’t seem to hold a train of thought very long. Isaac has gotten incredibly heavy and omg Amy please don’t jump on me. I can’t catch you today.

Bleh.

I’m going to go and hide under my rock for a little bit.

Have some photos to tide you over.

On the upside, Amy pooed in the toilet for the first time ever. I’ve never been more pleased to see poo.

Photos of the kids next time. Lately they don’t sit still long enough for me to take any good ones and I don’t have the energy for chasing.

Oh and Mum is hosting a give-away. You should go and enter.

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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.

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