Now the recovery starts. Living with Ehlers Danlos

by Veronica on August 4, 2011

in Ehlers Danlos Syndrome, My body is broken.

Dislocated left collar bone - photo taken in mirror

Dislocated Collarbone

I walked all over Melbourne last week, with my teeth gritted as my shoulder and ribs dislocated, trying to ignore what my lower body was screaming at me. I am pretty sure it involved expletives. It does appear however, that if you need to do something badly enough, you can force your body to do it.

Unfortunately, three days of late nights, early mornings, lots of walking, laughing and sitting – it all takes a toll. I am pretty sure I wasn’t making any sense when people spoke to me on Sunday night, waiting to fly back into Hobart.

The crash after forcing my body to keep up with my mind is usually swift and brain numbingly dull. I stop being able to walk any more than the bare minimum and my stamina for doing anything drops to basically nil. I spend a lot of time laying down with a book and a child snuggled under my arm.

Bendy joints don’t actually take too well to being overused and this time, I forced myself so far that I’m exhausted even writing this post (even though I want to) and everything has been a little neglected.

Case in point: I had to remove the hoses from the back of the washing machine today, to get rid of a blockage of sticks and leaves in the cold water intake. Half way through removing the first hose, I was curled up foetal on top of the washing machine. Nathan removed the second pipe, while I flushed the first one with a spray bottle. Getting them back on again left me  exhausted. To be clear, I am talking WASHING MACHINE HOSES. Not running a marathon.

Once I’d finished, I sat down on the bed to eat with the children, and woke up two hours later, with my pillow imprinted on my face and both wrists dislocated from where I had tucked them in to my front and then rolled on them.

Yay me.

Being chronically unwell manifests in a variety of ways. My relationship with food has changed and as much I adore food, I now choose food that I know won’t make me throw up. Nothing overly spiced, light, clear soups, mild flavours. All very boring in the scheme of things, but more fun than vomiting in public.

I think eating whatever I want from a restaurant menu is one of the things I miss the most. That said, I am becoming very acquainted with what a good consomme should have and the one I ordered at Movida Next Door while I was in Melbourne was absolutely divine.

I can tell that it is going to take me a few weeks to recover from the hell I put myself through in Melbourne and if I appear to be suffering from narcolepsy, or if I’m not about on twitter, you know why. There are only so many blocks you can walk and joints you can dislocate before everything rebels and the choice of coping or not coping is taken away from you.

Boo, hiss.

BendyGirl August 4, 2011 at 5:03 pm

*hugs* Have you popped your shoulder, popped the collarbone and got the collarbone stuck where the shoulder’s relocated into the wrong place? I hate dislocated collarbones – even genuis physio can’t come up with a good way to relocate them. Hope it settles soon with some rest.
And yeah, just yeah. You know I know exactly what you mean. Sometimes it’s just got to be done, sounds like you had a great time and it was worth paying for. Lots of love, BG Xx

Veronica August 4, 2011 at 8:45 pm

I think that’s what I did – it’s a photo from a few weeks ago now. I ended up just taking painkillers and trusting that sleep would fix it for me.

Fiona August 4, 2011 at 5:13 pm

I miss eating what I want. Take care this week 🙁

Veronica August 4, 2011 at 8:46 pm

So do I. So much.

Other Fiona August 4, 2011 at 6:10 pm

Ohmigosh. The photo makes me feel nauseous just looking at it. Cannot be fun at all. Rest well. xo

Veronica August 4, 2011 at 8:47 pm

It’s a photo from a few weeks away. Yay me.

river August 4, 2011 at 6:15 pm

*flippantly* supergluing yourself sounds like a good idea, but then you couldn’t move at all, and that’s not a good thing….

*seriously* please rest as much as you are able and get well. I hate to think of you hurting again.
Can you get some sort of filter at the cold water intake point so the hose doesn’t get blocked? An easily accessed so easily flushed filter?

Veronica August 4, 2011 at 8:48 pm

I’ve had better luck with duct tape…

It does have a filter on it and that’s what gets blocked. It was only difficult because we haven’t had the hoses off for a few years now.

frogpondsrock August 4, 2011 at 7:47 pm

Bloody hell Veronica we could have caught a bloody cab.

frogpondsrock August 4, 2011 at 7:48 pm

You are so like your father. It is okay to stop and say ouch every now and then you know.

Veronica August 4, 2011 at 8:44 pm

That photo is an old one – just for the record. And all the major walking I was fine with – I think I exhausted myself at the Market mainly! I didn’t realise how tired I was until I got home.

rachael August 4, 2011 at 8:03 pm

Boo. Hiss. Indeed.

Veronica August 4, 2011 at 8:49 pm

Yes. Sore and tired now, but I’m okay.

Glowless August 4, 2011 at 11:17 pm

It’s all about the after. Pushing through when high on adrenaline from a fantastic weekend is so common, and then wham. Freight train.

Marylin August 5, 2011 at 12:23 am

Sending lots of gentle hugs xx

MacLeod House August 5, 2011 at 1:28 am

Before I found your blog (and everydaystranger’s) I had never heard of EDS. It makes my paltry lower back pain seem like candy floss in comparison. Strength (mental and physical!) to you! Glad you got to do the Melbourne gig though – sometimes getting out of a routine, while obviously dreadfully tiring, is just what the brain needs.

Ali August 5, 2011 at 1:38 am

This. This is the hardest most frustrating thing about having a chronic joint problem. I live my life trapped in cycles that range between barely coping and completely fucked with a side of unable to do anything. I’m so sorry you have to do this same dance with your body. It sucks balls. At least know that there are many of us who get where you are, I could have written much of this.
Rest and relax and read books and give your hands and wrists a break. xxxxx

Achelois August 5, 2011 at 9:14 am

I agree with BG. Although I think perhaps the initial problem may have started in your neck. Although the semantics are of little use really are they. I have had physio’s wince and try and get this, suffer overuse injury to a thumb causing dislocation trying to help the problem you describe. As BG says, even the best of physio’s end up saying, could you try not doing whatever it is that causes it in the first place. ummm like sleeping, we need to sleep but we hurt ourselves even then. Never ever fall asleep in an exhausted huddle, arrange yourself carefully, supported with pillows,duvets, etc. to minimize the trauma! I can cope with the dislocations, subluxes from sleep (OK I just told a white lie) but the thing I hate is the lines on my face which last hours from the creases in whatever I am lying on. Silk is out of the question as its too darned slippery. Next time you go to a bloggy conference Veronica, have you thought about arranging to use a mobility scooter to help with the extra walking and subsequent exhaustion and extra hurties. Or perhaps a carer who will push you about willingly and with love in a wheelchair for the duration. I know you would have to put your pride in your pocket but Veronica, it will take weeks for you to get over this. It is only when we are out of our homes that the harsh reality of EDS becomes evident.
Be kind to yourself. Rest. Sleep, pace, rest. Tall order I know!
xoxoxoxoxo

Kathy August 5, 2011 at 9:51 am

I’m glad you liked the MoVida consomme. I’m not glad you are in pain 🙁

Wishing a swift return to equilibrium for you.

Marita August 5, 2011 at 5:46 pm

Gentle hugs.

Rusty Hoe August 5, 2011 at 6:03 pm

Oh Veronica I’m sorry you’re paying so much for your weekend away. Our bodies aren’t forgiving when we push them to do things other people take for granted. I hope you get some relief soon. I’m glad you got to go though. As you say if we really want something we can push our bodies far beyond their usual. If only there was no price to pay. Hope you have a chance to rest and heal.

mama mogantosh August 5, 2011 at 9:54 pm

Bad news V. Sending big electronic hugs your way. Hope your recovery isn’t too prolonged. xx

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