Ehlers Danlos Syndrome

You know what Isaac? If you bend yourself backwards like a pretzel when I try and feed you, then you’re not going to be able to find my boob. Flailing about like a dying chook and hunting for a nipple somewhere in the vicinity of my thigh is not going to cut it. Milk does not come out of my thigh, your left shoulder, or my belly button.

If you’re a passerby in Tasmania any time in the near future and you see a slightly frazzled mother, telling her baby to ‘please for the love of god just bend in the freaking middle and FEED already’, then wave at me as you back away slowly. Don’t come and say hello, not unless you want to catch a glimpse of my breast as we talk. Because it probably will happen.If you don’t mind the sight of nipples, then definitely stop and I’ll say hello. We all know about the thousands of bloggers you can find in Tasmania anyway. Heh.

Amy. If you pour your entire glass of water into your bowl of dinner, don’t whine to me that you are hungry. I will drain the water out and you can eat the soggy bits of dinner you have left. I’m warning you now. I love you, but I’m sick of your antics at dinner time. There is no dessert. There is nothing different and you are not going to be granted a sandwich or a whole different meal before bedtime. I cook one dinner, you guys eat it, or you don’t. Easy. When you’re old enough to cook your own meal, you’re allowed to be slightly fussier. Cooking your own meal comes with a side of clean the kitchen up afterwards though.

My shoulder. Please, can you just stay in place for a little bit? You’re not allowed to get broken, you attach my baby carrying arm to my body. Yes, I know that my arm goes a pretty purple colour when you sublux, but I’ll take normal and working over pretty and purple any day. Please. I promise I’ll rub you with pretty smelling stuff if it would make you happy. Or something.

Dear Sales Assistant. Yes, I know, it sucks that Canon won’t cover my camera under warranty. It could have something to do with the fact that my daughter gave it a bath. Maybe it was a special present to me [I’ll just make Mummy’s camera all SHINY and CLEAN while she feeds my brother in the bedroom…], but who knows really? The good thing is, I have spoken to my insurance and they will cover most of the repair cost. All you had to do was send me the invoice from Canon. Was it too hard to not scan the invoice into the computer upside down? It made things difficult when I tried to see what they were charging me for everything. Thank goodness I’ve got a laptop. Yes, I may possibly have turned my computer upside down in order to read the damn document. Shut up.

Canon. I understand that you don’t cover water damage, or corrosion caused by such. However, a repair bill that is $900.03? What the hell is the 3 cents for? Wouldn’t it have been easier to just write that 3 cents off and charge an even $900? It just seems like an awful hassle for an extra 3 cents. Sure I know that for every 1000 repairs you do with that extra 3 cents added you make $30 but still. 3 cents. Really?

Apparently, the world is out to get me. I shall thwart it by giggling maniacally. I mean, what the fuck else can I do?

Sigh.

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I’m losing weight, yet my stretchmarks are getting bigger. The ones behind my knees are shocking. Thank god I can’t see them.

Having sex makes my hips hurt like a mo’fo. Not having sex makes my head want to explode just a little.

My skin tears. In uh, intimate places. Let me tell you, that’s just a shitload of fun right there. Can’t have sex cos of my hips, can’t masturbate because of my skin. Anyone know how to make dirty dreams happen? What I wouldn’t give to be 14 again and able to orgasm through my jeans with just some heavy pashing.

Putting on a support bandage in order to stop my knee dislocating again, only to dislocate my wrist in the process. Then having my OTHER knee sublux.

Do you think, if I asked nicely enough, I could trade this body in for a newer model?

***

Also, Tiff’s daughter Immy is in hopsital with bad facial cellulitis. If you could head over and give her a hug or something, I would greatly appreciate it. She hasn’t gotten a post up about it, but you can find her on Twitter if you like.

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It’s EDS awareness month, which I am doubting is taken seriously enough in Australia. Goodness knows that doctors everywhere seem to be hideously undereducated about EDS.

We are not freaks. Not all of us can contort ourselves into a tiny little package, nor does ‘skin involvement’ necessarily mean that we can stretch our skin great amounts. My skin involvement is simply a bunch of stretchmarks showing up for no reason at all and getting worse, despite me not gaining any weight, the worst of them are at the back of my knees. I injure easily, take forever to heal and my scars stay purple for ages, before turning silver and widening/raising (there is a medical word here that I have forgotten). Also, you can generally find bruises all over me, even if I haven’t done anything to myself. My most recent ones were on the back of my hand (seriously, wtf?) and an orange sized one on the back of my calf. I’m also stretchy in my skin, but with everything else, it seems like nothing much. Sigh

Most of us don’t even realise we are different when our fingers bend back further and our elbows hyper-extend. I showed my brother a photo album of EDS photos the other day, only to have him reply ‘What’s so special about that? And that? And that one?’ Well nothing, IF YOU HAVE EDS. If you don’t, you’re left looking at the flexi people and thinking, ‘that looks like it hurts.’

I think one of the most common misconceptions about EDS is that our dislocations don’t hurt. Unfortunately, our dislocations DO hurt just as much as a sport/injury induced dislocation that you might have suffered. Even more unfortunately, our dislocations happen more easily and more often that normal people. It’s just the way it goes.

There is a huge range of abilities within the same EDS spectrum. Some people are only very mildly affected, while others may experience worse symptoms and be unable to do everyday things.

I suppose that it makes sense that I am having a crash* in the middle of EDS awareness month. What better way to make everyone aware than feeling like shit for a while? Not a very pleasant way, unfortunately.

Oh well. I do know that a bunch of Tasmanian doctors are getting a crash course in EDS management simply because of my diagnosis. Like BendyGirl said, if me getting a diagnosis helps just one other person going through what I’m going through, then it’s worth it. It sucks, but it sucks more to be told it’s all in your head.

Video via BendyGirl.

To find out more about EDS and HMS (Hypermobility Syndrome), you can visit here or here.

*A crash generally happens when I’ve been pushing myself too hard. Getting over one pre children used to leave me in bed for a week, just sleeping and resting. Post children is a slightly different matter, as bed rest is something hard to come by. I reckon this crash is just caused by 4+ months of sleepless nights catching up with me (late pregnancy is not conducive to sleeping through the night any more than having a newborn baby) and keeping the household running/fed/clean(ish).

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