If you watch me walk down the street, you probably wouldn’t know that I had Ehlers Danlos Syndrome. Mostly because I try not to get into positions that end up with me walking down the street – which strikes shopping off my list.
If you notice me walking, I probably look okay, to you. You don’t see the slight hitch in my step as my hips sublux over and over again and you (hopefully) don’t see the intense concentration on my face that shows I’m placing each foot consciously, making sure they don’t turn in/fall apart/trip me over.
Most of the time, I don’t even notice these things either. The conscious foot placing has become second nature, like making sure everything is in it’s place before I stand up. Falling isn’t as fun as it sounds. I’ve put up with them for so long, ignored them for so long that they pass me by. I don’t notice how hard walking is, or how my hips slide around in the joint.
Until I have a major crash and I discover that I’ve burned so much energy being okay, that I can’t be okay anymore.
When I dislocated my knee at the beginning of the month, I was crashing and crashing hard. I don’t pay much attention to my daily dislocations, mostly because they’ve happened so often that they’re nothing special anymore. I do however say fuck a lot as I busily try and relocate things and I have been known to kick Nathan in the shins for huffing when asked to reduce my many many dislocated ribs.
My knee however was different. It was dislocated badly for almost 3 hours, leaving me unable to move. By the end of the 3 hours, I’d gone from being mostly okay with just some minor pain (when the fibula was totally dislocated) to openly sobbing as it slowly slowly relocated over whatever tendon was holding it out of position.
That was the straw on the camels back. The next few days I spent curled up in the recliner, braced and taped to within an inch of my life, not really able to do much of anything except issue orders and dole out cuddles.
I’m still not recovered from the big crash. It’s probably the hardest I’ve pushed myself and the farthest I’ve fallen since I was in High School and determined to be like all the other teenagers competing in our Rock Eisteddfod. Yes, I did it. I also spent a month in bed after it.
It hits me hard after a big crash, just how bad my EDS has gotten. My left shoulder slides around in it’s joint and my pelvis feels like it’s a wobble board. My ribs fall out of place and my collarbones forget how to hold together, along with many many other things.
And it’s stupid little things that drive me insane. Not being able to hold my arms up long enough to brush my hair, without running out of energy and needing to sit down where ever I am. Being exhausted, but at the same time, being completely unable to sleep. And if I do sleep, waking up with more dislocations than I fell asleep with and hurting oh so badly.
People don’t see that when I’m out and about though. Hell, people don’t see it full stop. Even Nathan doesn’t see the bulk of what dislocates and how bad it is, day to day. If I told him about every dislocation I’d never get anything else done.
Ehlers Danlos is an invisible disability and you can’t see it on me. Not unless you’re bendy too and can spot the symptoms across a waiting room. Unless I’m wearing a bright pink wrist brace (which I’m totally going to start campaigning for, the beige colour is shit) you can’t tell.
Unless I’m exceptionally grumpy, no one knows that I’m feeling crappy. On days when I simply cannot brush my hair without needing to sit in the middle of the bathroom floor exhausted, I don’t leave the house. Easy as that.
May is Ehlers Danlos Syndrome awareness month, so this is me, making you aware. Because this month, I don’t think we’re seeing any doctors and I’m getting a little tired of having to go over the same thing over and over again with our doctors. EDS affects everything. My collagen works like sun soaked chewing gum, unlike most people’s, whose collagen works like snappy rubber bands. Things hurt. My pain is bad, my joints are bad and I’m tired.
And people can’t see it.
Which is a curse and a blessing in the same breath.
Thank you.
I dislocated my left wrist typing on the 5th and have been stuck with an onscreen keyboard since so I haven’t been able to write a post of my own about EDS. You’ve said much of what I would have. Thank you.
I want one of those pink braces. Mine’s black which is a bit better but pink would rule.
Oh sweetheart. Just wanted to send you some love and cuddles. Gentle ones of course. xxxxxxx
For one, wildly overexcited moment I thought you actually knew where to find hot pink wrist braces. Ah well, it was good while it existed in our imaginations!
Sorry to hear you’re going through such a bad patch, how are your hormones? Hope it stops being such a bad patch soon, I s’pose the consolation is they always do in the end.
From someone who can see it, I recognise your pain, hear your exhaustion and will you the spoons you’ll need to see you through. Lots love, BG Xx
Oh Sweetheart I wish I could fix you. It is as simple as that.I would give you all my spoons if I could. Your father is very Edsy at the moment as well. xxxxxxx
I can see how broken you are and it breaks my heart, but there isn’t anything we can do except suck it up and get on with it. I find the most exhausting thing is the level of the medical professions ignorance about EDS. But I am watching with pride as you are changing that, my lovely girl.
I find it oddly comforting to see that there are other people out there just like me! What I’m really curious about though, is whether you know of anyone who has other “strange symptoms” related to EDS. Things like dizziness, tingling, numbness, and other neurological-type symptoms. Can this be related? I am trying to find out but am discovering that most doctors don’t know crap about EDS.
Wow, Veronica, thanks for this post. I had never heard of this syndrome and I give you huge props for how well you’re coping.I live with a signifigant amount of pain too from a sort of old-lady-spine, so I hear you. It takes SO MUCH energy to keep your happy-energy up when you feel like shit.But it’s part of the contract: when Mama is unhappy, the machine starts to fall apart. Then you need even more energy to get everything and everybody back on track. Thank Dog for supportive partners, right? Feeling for you though- can see there’s a lot of hard work ahead for you. Big electronic hugs. x
I’m so sorry you deal with that. It must, at times, feel consuming. And it is frustrating when you struggle with something that others can’t see or don’t understand. This situation in no way compares to what you deal with, but I have varicose veins that give me fits sometimes. So, at work, I put my feet up on a chair by my desk, and you wouldn’t believe the comments I get from people – “Hey, just get comfy, why don’t you?” or “Taking a break?” “Kicking back? Looks nice.” It just looks like I’m being all relaxed and not working as hard. Argh.
Thank you for putting your energy into this Veronica; I hadn’t ever heard of EDS before stumbling across your blog, so consider the awareness campaign successful with at least one person. We all tend to be so wrapped up in our own issues that we tend to forget that others endure suffering also. Maybe if we stopped to remember that from time to time, our own problems wouldn’t seem so bad. I hope things start to get back to manageable for you soon.
Veronica, I have no idea how you manage to live your life, parent your children, and write so well in the face of something like this. You are spot on that people really do not know what it is like to live with a debilitating but invisible disability (I imagine, without knowing for certain of course, that this is how sufferers from depression must feel too). Wishing for less dislocations for you and more effective treatments REALLY soon. And you have my sympathies and some very, very careful cyberhugs.
woah that last photo is amazing and gross all at the same time….. I can’t imagine living with what you live with day in and day out, you amaze me!
I will return to read the comments.
I have just written a very very self indulgent and messy post about pain on my blog.
Thank you Veronica for providing the world with an eloquent and moving description of every day life living with EDS. Bendy Girl wrote recently on her blog of people who have relatively mild hypermobility who would be able to live a much better quality of life had they access to resources to help them. Us lot on the severe end of the spectrum I guess learn to live with the condition because we have to.
I hear loud and clear what you say and understand so well. As the children get a little older some aspects of your life will improve simply because you won’t need to lift and bend quite so much.
My OT can make supports in pink, purple, black etc. now – perhaps a referral to an OT would gain access to these for you too. They are made out of similar stuff to that which windsurfers wear?
Take care special girl and please accept a virtual gentle hug from me.
xoxoxoxo
And it’s probably the never being able to take a day off from the unrelenting grind of managing everyday life that provides the icing on the cake that comes of living with EDS. Bravo you Veronica for not giving up but continuing to fight it all the way.
PS. I just bought some more books from you-know-where and some shoes from Rivers. How did we manage before the internet lol!
It’s awful when people can’t see your pain. I’m nowhere near as bad as you, not having EDS at all, but I still hate having to put on a smiley face at work when my back is strained again, when my arthritic neck is paining me, more recently I’ve developed bursitis in my shoulder. Most of these will pass, but you are living with all of this daily and forever. My hat goes off to you for speaking out and also for being the wonderful person you are in spite of your troubles. I’d hug you if I wasn’t afraid I’d dislocate something. so here’s a virtual hug instead. Cushioned with feather pillows.
Pain can overcome so many of life’s little pleasures that I read you enjoying nonetheless. It’s a strengh I admire: loving life in spite of pain!
I have *no* clue how you can parent toddlers with all this going on. You have got to be super-organized or have a very childproof house or something. I just know how badly things would fall apart here if I had to sit still for a few days.
I just can’t imagine how hard it is. Even when you describe your daily life and even having read about spoons I can’t imagine.
If I ever see a hot pink wrist brace I will buy it immediately, no matter the price.
This this this this this. A million times, THIS.
I wrote a blog entry a while back about ‘invisible’ disability (at least, I think I did. I started to. It may have turned into a rant about chocolate or depression) and every time I see another blogger write about it, I find myself nodding emphatically and going ‘YES.’ I tell people about spoons and I try and explain and I borrow other peoples words but I can never quite manage to get across what it means for me.
I don’t have EDS (that I know of. It’s one of those things I need to email you about but my life just imploded and I havent had time) but I have Ishoo’s, especially with mobility, and when you LOOK fine it is so hard trying to make people understand that you aren’t, and then YOU forget that you aren’t. I’m nursing an angry, lumpy, bruised shoulder and back and in pain *all over* because the other day I thought I could handle babywearing the whole day. I said to myself ‘It’s 6 hours on and off. Other women do it. Suck it the fuck up.’ Yeah whatever. I’m an idiot.
I hope you have a happy EDS month, with as few as possible dislocations, minimal pain, and maximum photo-and-gardening-friendly weather.
I have read this post twice trying to find something worthwhile to say but I cant.
So instead I will say you dealing with this with such grace. I cant imagine your pain or your daily struggle but you seem to outwardly deal with it in a very real way.
I have huge amounts of respect and admiration for you.
I’d never heard of it until I came across this blog looking for gluten free bloggers. It sucks that your days are so hard recently 🙁
Heather@It’s Twinsanity – you should be checked for POTS- Postural Orthostatic Tachycardia Syndrome. I was diagnosed with EDS first and struggled with the the symptoms you stated above and it took me forever to get a diagnosis. Many EDS patients have POTS. Essentially, the current research indicates that because EDS is a connective tissue disorder it affects our veins and thus our blood pressure- for me causing dizziness, near passing out episodes, passing out, migraines etc. But the symptoms vary by patient and include all of the symptoms you stated. The POTS can worsen if you do not at least take conservative measures (drink a lot, maybe increase salt). But this is very individualized and you should consult with an expert. I would highly suggest Dr. Blair Grubb in Toledo Ohio. He’s one of three in the US who specializes in POTS (others treat it yes, but he specializes in syncope and pre-syncope, particularly POTS). My symptoms got so bad that I couldn’t get out of bed, and while it’s not completely gone, I have a life again.
I hope that was helpful!
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