Ehlers Danlos Syndrome

Avoiding a wheelchair is a really big part of my life

by Veronica on February 9, 2012

in Ehlers Danlos Syndrome, My body is broken.

Last year, I spent some time seeing a pain management team, which included a pain management physio. This was a SPECTACULARLY crappy experience, ending with me being handballed off to a psychologist before my physio would work with me again.

Of course, I’ve since finished therapy, having worked out that my feelings of anxiety and impending doom are actually a physiological problem, not a psychological one. Basically this means that I’m fucked, but that it’s my screwed up nervous system’s problem, not my brain.

My brain is fine, thank you.

The reasoning behind me needing to see a psych was something along the lines of needing to get my license, to make getting into the city easier. But I’m too scared to drive because a major dislocation while driving is life-threatening, at best. Even with braces on, I dislocate in and around them. Which is so much fun.

All of this is to say, I’ve been dumped by my physio, who hasn’t been in touch since sometime last year. I’m sure as hell not chasing him up, as his reasoning on EDS was pitiful at best –

[Joint dislocations shouldn’t hurt because they’re not causing any trauma, because you’re bendy already. It’s just a fear response to perceived damage. To which I asked what about the torn muscles and ligaments that sometimes accompany bad dislocations? He changed the subject.]

– and I decided that he was simply an arsehole.

He was my third physio – the first one deciding that I was too complicated for her to manage and sending me away, the second being lovely, but part of the public system and I have no idea how I fell through the cracks of her system, and the third being a fuckwit.

Now I’m pregnant, which requires management by a good physio.

Which I don’t have.

Insert maniacal laughter here, because of course I don’t have a physio when I need one. OF FUCKING COURSE.

It’s like the time I had to cancel an orthotics appointment because I’d dislocated my knee the night before and physically couldn’t walk. They said “we’ll call you back with another appointment” and I never heard from them again and the next thing I know, the clinic has moved and I am lost in space.

But I digress.

Pregnant with Isaac, my pelvis started to separate sometime after week 20 of pregnancy, causing excruciating pain. The pregnancy physio associated with maternity saw me, put my pelvis back together, braced me and gave me the info about my joints that I needed to get my diagnosis changed from Chronic Fatigue Syndrome to Ehlers Danlos Syndrome.

I am 10 and a half weeks pregnant now and I can feel my pelvis falling apart, which is causing a trickle down effect through my lower back, ribs, hips and knees. I was hoping to avoid this until after I’d been referred and seen by Maternity at the hospital (with access to their, frankly amazing, physiotherapists), but here we are.

At 10 weeks, I am falling apart.

BUT (and here is the good bit) I predicted this might happen (albeit, not this early) and planned ahead, by buying an elliptical trainer. Something recommended for low impact exercise and pelvis/hip/back/leg strengthening.

I think it’s helping.

And when your motivation to exercise is staying out of a wheelchair, it’s pretty hard to make excuses.

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It was for your own good, Internet

by Veronica on December 13, 2011

in Ehlers Danlos Syndrome, My body is broken.

When I got to the point where the Internet became less escapism and more ‘holy fuck I’m going to stab myself in the eye’, that’s when I decided that right now, novels are safer and the Internet probably ought to fend for itself for a few days. So I took myself off the Internet, mostly ignored twitter and didn’t write anything.

I can’t guarantee that I am completely better right now, but I can guarantee that I know my limits and I will remove myself from the Internet before making sweeping statements regarding selfishness and arseholes.

So, there’s that.

Yesterday I spent sitting in the recliner, with the perfect amount of pillows propped under my left knee (my good knee, bastard luck) and supporting my shoulders, while I lamented the fact that I had only panadol for painkillering and trying not to cry. It was a bad day. It was a bad day in that it felt like I’d been chopped into pieces and put back together badly. A trapped tendon in my knee left me wondering if it was going to dislocate and dump me on the ground screaming first, or tear. It didn’t dislocate and doesn’t feel torn today, so I can only imagine that it has something else fun in store for me.

It was at the end of yesterday that I got incredibly grumpy about my response to pain meds and wondered if it would be worth feeling like I’d taken speed, in order to be able to function just a little bit. In the end, I went to bed and sulked, knowing that sleeping overnight was more important than being pain free and writing a blog post, or eating something.

So that’s what I did.

Today is better, tomorrow will hopefully be better again.

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Hitting the wall

by Veronica on December 9, 2011

in Ehlers Danlos Syndrome, My body is broken.

The problem with a condition like Ehlers Danlos is that sometimes I will go weeks or months without any major issues. That is of course if we’re not counting minor dislocations, nausea, vomiting and tiredness in our major issues list and ignoring the arthritic pain and assorted aches.

This means that I get to function relatively normally for a period of time. Yes, I puke of an evening and have to manage what I eat relatively well. I also dislocate my ribs/shoulder/wrists/ankles/fingers every day, but that isn’t a huge deal. They’re all relatively easy to reduce and while painful, I don’t scream over those. This is what relatively normally means to me, but we can work with this.

The major problems appear when I’ve been running on empty for a while. The holiday season is rough on me – rich food, family commitments, later nights, excitable children – these all conspire to use my energy faster than a week, say, in the middle of winter.

So when I had a positive pregnancy test, a hospital admission for Isaac, a wedding to organise and execute, a miscarriage and a few other unbloggable things happen within a fortnight, you might not be surprised to hear that I hit a brick wall sometime on Tuesday, as my reserves of any remaining energy disappeared and I found myself pretty unable to do anything normally.

You might not be surprised, but these crashes always take me a bit by surprise (apparently, I am more determined than smart sometimes and seem to think my body should run on willpower alone) and leave me grumpy at the whole situation.

After all, there is only so much you can accomplish when the ability to walk has just about deserted you and your children are running in circles and demanding feeding.

Thank god for Nathan, anyway.

I am trying to take it easy, but you know what? I’m just pissed off. I’m pissed off that I can’t eat right now without wanting to vomit, that I can’t walk, that I can’t move without feeling like someone three times my age, constantly keeping an eye on my joints to make sure nothing breaks.

I’m pissed off, knowing that getting my boob-to-knee support wear on would help – but that I know I wouldn’t be able to get it on in the first place, without dislocating at least one major joint. And I’m too scared to do that.

I’m just pissed.

I know that this will get better. My last big crash that felt like this involved me quitting my job and spending six weeks in bed and 12 months recovering (I was pregnant with Amy during that period, which didn’t help matters) before I felt like I had a decent control over my body again (insomuch as you can control vomiting and dislocations).

Today I have at least managed to sit semi-reclined and deal with emails and write this post (we’ll ignore the dislocared thumb joints near my wrist, I don’t type with my thumb anyway), but it’s a slow process.

I used a good deal of my energy resources today just having a shower, and suspect that my entire afternoon will be spend curled in a chair with my kindle, trying to work out if my hands are stable enough to hold a cup of tea. Yesterday they weren’t, but I’m hoping for progress.

And maybe, if I’m lucky, tomorrow will be better too.

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So far from okay

by Veronica on September 14, 2011

in Cancer, Ehlers Danlos Syndrome, Grief, Headfuck, My body is broken.

My last few years have been … eventful. Starting with a pregnancy that didn’t look like it was going to end well, cancer, death, family fuckwits, autism x 2, early intervention, Ehlers Danlos, a falling down house, debt and depression. It hasn’t exactly been the time frame that I would hold up to the light and dissect, more the time frame that you force to the bottom of your closet, stomping on it as you go, so that you don’t have to deal with it anymore.

I signed up to participate in RUOK Day and then promptly decided that I would be better off stabbing myself in the eyes.

I am not okay. I am so far from okay, that okay is the distant shore that I left some years ago, before doctors told me that things were “all in my head” and tossed around words like anorexia and problems at home to explain why I was sick and exhausted, why I threw up every day and why my joints hurt so badly.

You tell me, how are you meant to trust the medical professionals to help out with mental issues, when mental issues are what they thought your major, genetic, connective tissue disorder was? I don’t trust them to help anymore.

I watched my grandmother die. I dealt with the fallout that rewriting a eulogy caused. I read long winded rants about myself on the Internet, written by a family member. I dealt with the trolls. I helped clean out her house, knowing that it was never going to be okay that she was dead and we were parcelling up her belongings.

I went to a doctor to discuss anxiety medication, only to be told that it would be better to sort out WHY I was anxious, rather than just medicating. You can’t cure grief by wanting it to hurt less, any more than you can make a broken bone heal faster than it does. I left with medication, that didn’t work anyway.

My son was diagnosed with autism and while it wasn’t the worst thing to happen, it was the straw that broke the camels back. Really universe? Autism and Aspergers ON TOP OF EVERYTHING ELSE? REALLY?

Fuck you.

I would like to be okay, in the same way that I would like my joints to stop dislocating and to stop vomiting all of the time. To stop having to deal with meltdowns and the assumption that I am okay, because I tell everyone I am. I would like people to notice, without having to be told, just how far from okay this whole mess is and to stop assuming that they know how they would handle it.

I would LIKE for the Pain Olympics on the Internet to stop and for people to stop negating what I am dealing with, because it could be so much worse. Sure it could be worse, but stop trying to fucking jinx me. Last time I thought that nothing else could go wrong, everything else went wrong.

And you know what? I DON’T want to talk about this. I don’t want to cry anymore, or have to talk about this, or try to explain. Writing it is hard enough. The last psych I talked to about my anxiety and grief, seemed to think that it was nothing to worry about. Obviously I downplay things, really well.

RUOK?

No. No I am not.

Now excuse me, while I get off the Internet, before I am tempted to swear anymore.

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Blaming everything

by Veronica on September 10, 2011

in Ehlers Danlos Syndrome, Headfuck

I keep starting to write posts and them reminding myself that actually, no, I’m not meant to be writing about that on the Internet. You see, I’ve taken some pain killers and it’s been a while since I took them, so I wasn’t sure if I would end up passing out, or just getting really stoned. This time, it appears that instead of passing out, I am inflicting myself and my weird feeling ears on the Internet.

You’re welcome.

I haven’t slept properly in a week. I keep passing out and them waking up with half of my joints where they’re not meant to be, then putting everything back in place, before passing out again. If you do this every hour, by the time your children wake up in the morning, you are not only exhausted, but you feel like you’ve been beaten by a baseball bat all night. This is how I’ve spent the last week.

Sure, I could blame the flu I have had (and I will) and I could blame the bed I have (and I will) and I could blame Nathan’s snoring (and I will), but really, it’s all the crappy joints, and the crappy problems that come with the crappy joints and I’m just a little bit over it.

Okay, I’m a lot over it.

I’ve been trying to work out why my shoulder was hurting and then I had a poke around in there to discover a dislocated collar bone. On top of dislocated ribs. And a hip that goes click-THUNK when I walk. Along with multiple other joints that have decided to rebel. I think my body wants a divorce from me, but I’m not quite sure where I would find the legal team to take on that nightmare.

Also, I’m pretty sure that none of this is making sense, but that is okay. You can blame the pills.

I was thinking about my pain management appointments and the fact that I’ve been handballed off to a psych, to get my anxiety issues sorted, before my physio will start to work with me again. I would have liked to handball my physio off to school, to learn more about EDS, before he could work with ME again, but it seems that you can’t demand that they do that.

Pity.

Of course, getting told I need to see a psych is the easy bit, the hard bit is actually getting my shit together to make the damn appointment (where did I write those numbers down?), making an appointment for some time that isn’t 2013 and then keeping my head together until I get there. Easier said than done, it feels.

And now that I’ve put this out onto the Internet, probably regretting it tomorrow when I wake up aching and ill, I’m going to disappear to try and read a book.

That is, if I can make my hands work properly.

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