Ehlers Danlos Syndrome. What day to day life is like.

by Veronica on July 28, 2009

in Ehlers Danlos Syndrome

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.

{ 30 comments }

Gina July 28, 2009 at 8:23 pm

Wow. You are one strong lady!

Bendy Girl July 28, 2009 at 8:33 pm

Practical stuff:
Salt is your friend! Embrace it, love it, use it liberally. It’ll naturally bring up your BP a bit, help with all sorts of techy medical stuff and helps reduce nausea too.
Caffiene, can be good, can be bad. Some specialists in this type of autonomic nervous system dysfunction reccommend caffiene some advise against. Personally I’ve tried using caffeine to help with these issues but stopped because it made me vomit so frequently
The middle ground is not to have a cup of tea or coffee until after you’ve had something to eat in the mornings
Water: Again, it’s your friend. Drink lots, lots and lots. Avoid carbonised drinks like the plague (unless in v v small sips when particularly nauesous) my theory is that as the digestive system is made up of/supported by collagen it can struggle with the floppies as much as the rest of us. I find extreme nausea links to extreme floppy days. It’s like the stomach flops on itself and can’t function as a muscle properly..again what a shocker! The trick is to sip carbonated drinks slowly until the gas helps lift the stomach back into a better position. That and if you eat small and regular (like every couple of hours) you won’t feel so sick. Eating like that is tricky without children but with them may in a way be easier…eat at their snack time, doesn’t need to be much, a biscuit, some raisins etc…just don’t let your stomach get too empty.
Back to water, if you can’t tolerate caffeiene first thing drink water. Preferably before you get out of bed in the mornings. Before you do the wiggle everything back in. It’ll help with BP & muscle hydration
Autonomic issues cause all kind of problems with your BP. It probably swings as well as being just low. Simple stuff can help. If you’re playing on the floor with the kids stretch your legs out infront of you not crossed under you.
If you’re reading a story/watching a dvd with them get them to snuggle on the couch while you lie/recline with legs stretched out.

Apolioges for crap spelling/typos my hands won’t worjk right today Hope you get some rest at least
BG x x

Marylin July 28, 2009 at 8:40 pm

Oh sweety, you’re a stronger woman than I am! ((huge hugs)) xxx

Sarah July 28, 2009 at 8:49 pm

You write with such candid brutality. I can’t imagine what you describe as “simply stating facts” and how you manage in everyday life but you are courageous and funny and doing good things for your invisible disability. I hope people looking for answers do find your blog and enjoy it as much as I do!

frogpondsrock July 28, 2009 at 9:05 pm

I wanted to ring you sweetheart and say what a well written but for me Heartbreakingly Sad post as well. But your brother is on the phone *sigh* I nipped over and gave Bendy a hug for her lovely helpful comment. You know that I will buy you a huge bag of salt now as well as cartons and cartons of fizz.. xox

Janet B July 28, 2009 at 9:50 pm

Oh Veronica! It’s horrendous. I didn’t know what it was about, but will read up on it now. Keep your chin up and what a post! Good luck with your attempt to make people more aware. There must be many who don’t even know they have it.

lceel July 28, 2009 at 10:47 pm

I wish there were answers, but I know from my own experience with EDS (it runs in my wife’s family – and she has it) there are few answers and fewer still that understand the questions. Doctors are not at all familiar with EDS and efforts at remediation are spotty, at best. The only people who really understand EDS are the people who are living it – they are, like Bendy, the only REAL source of information about how to handle it. My heart goes out to you.

Candy July 28, 2009 at 11:04 pm

My gosh, I never even heard of this disease. It sounds like an impossible thing to live with, and yet you do. You’re incredibly strong, and terribly brave. Best to you.

Ali July 28, 2009 at 11:20 pm

Wow. SO much to deal with. It’s funny, I share many of the things that you talk about. I bruise and scar easily and have hypermobile joints. I also have insanely low BP. I second the salt thing! I don’t believe I have EDS because there are also many aspects that I don’t experience but I can imagine that the whole package you have to deal with must be a nightmare at times. It’s a great thing to put it out there for others to read. I certainly had never heard of the condition prior to you.
x

Marie July 28, 2009 at 11:35 pm

Oh my.

talina July 29, 2009 at 2:03 am

It is great that you are sharing this, it will help others tremendously. Plus, getting it all out is good.

I <3 you and your strength. Keep it up girl!

Cri July 29, 2009 at 3:03 am

i’m really sorry, having to ask for help sucks. you’re are one tuff mama though <3

Xbox4NappyRash July 29, 2009 at 3:45 am

Well done, very well done.

Robin G. July 29, 2009 at 3:50 am

I can’t even imagine. But, as others have said, kudos to you — your blog will turn up on Google as other scared people search “Ehlers Danlos Syndrome” to try and make sense of their lives. You are truly doing a great service.

Barbara July 29, 2009 at 7:23 am

It’s a wonderful thing that you’ve done here. You will help so many people. And maybe inspire someone to do some research into working out what could be done to help/relieve you – if only I were scientifically minded.

Brenda July 29, 2009 at 10:31 am

I feel silly complaining about my *aches and pains*. Thanks once again for bringing everything in perspective for me.

I admire your courage and strength Veronica.

Keep on kicking that EDS on its arse.

Hugs to you Ms Bendy gurl.xx

Maddy July 29, 2009 at 12:08 pm

Hmmm. Invisible disabilities……that’s why I follow Bendy Girl.
Best wishes

Sharon July 29, 2009 at 12:37 pm

That my lovely is pretty shitty. But you do, and will continue to, fight back because that’s the way you are. I hope you continue to find the strength, persistence and humour to keep your life as ‘normal’ as possible for the whole family. But probably a day off every now and then wouldn’t come amiss either ;-)

Tanya July 29, 2009 at 6:20 pm

my Ex has EDS and I used to get pissed off about him buying 10 bottles of coke every shopping trip, but apparently it does help.

It is one of those pain-in-the-arse conditions from what I could tell with him. No strenuous jobs cause you could end up pulling something out of place. I wouldn’t cope, I really wouldn’t.

river July 29, 2009 at 6:59 pm

You’ve explained it very well, and I’m glad you’re working to make people more aware of this condition. I know that things will be easier for you when Amy and Isaac are able to do more things for themselves, but that’s a long time away. Meanwhile, accept all the help you can, and I’ll keep praying for a magic wand…

Laura McIntyre July 30, 2009 at 3:55 am

I admit to never having heard of it before your blog , can only imagine how hard it is dealing with it and all it brings while raising a family

Donna B. July 30, 2009 at 4:52 am

I didn’t know anything about EDS either. You are definitely one strong woman!

Hyphen Mama July 30, 2009 at 10:04 am

Wow. Just wow.

achelois July 30, 2009 at 10:44 am

Agreeing with Bendy about salt, coffee I like but it doesn’t like me! I am fussy about my salt sources though as can’t abide table salt and have a penchant for a sea salt the brand name I can’t remember right now! Autonomic dysfunction is crap. EDS is crap but us bendies become our own experts. I always say I couldn’t devorce as would have no one to mash the potatoes. A joke between friends when asking after my other half is ‘how is the potatoe masher’ I appear to have lost the ability to spell and all related grammar. I can’t remember how I coped when the children were little – you have my complete and resounding empathy and understanding.

Joyce-Anne July 30, 2009 at 10:54 am

You are unbelievably strong and an amazing woman. <3 and ((hugs))

Ree July 30, 2009 at 12:30 pm

It’s what we do, honey. We write to get it out – to share our knowledge and our pains and our loves.

And WE, who love you, love you all the more because of your strength and your honesty.

xx

Leslie July 30, 2009 at 2:00 pm

A bad mood can nearly keep me in bed all day. I don’t know how you do it. You are incredible.

Pia July 31, 2009 at 12:36 am

I admire your strength and your fortitude. You are an incredible person. More important than your disability, I feel your love, kindness and courage.

Jazzmenow April 11, 2010 at 9:35 am

Thanks for an enlightening well written post.

Michelle November 9, 2010 at 12:27 am

Veronica, I would like to thank you for sharing your day with us. It must have been a difficult post to write, to be so candid about all those little things. I’d never heard of EDS. It must take a real toll on your mothering in. My little girl has eczema and I get sad at not being able to take away the itchies, you can’t even do something so ‘simple’ as run your little girl a bath. It seems like you have a wonderfully supportive mum, and a blogging community of people to support you and I am thankful on your behalf.

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