You know what a diagnosis after so long gives you? It gives you a hyper-awareness of your body and what you are actually feeling. You start to pay attention to what your body is telling you and actually listen to it.
Which, you know, is great in theory. Unfortunately it means that instead of brushing off any and all pain, I am (stupidly) paying attention to it now.
Cue thoughts like this:
‘Why is my ankle hurting? Hang on, I’ll just stretch it out and OWOWWWW *click* shit. Wait, that’s why my ankle hurts. That bone flicks out. Heh. Who knew?’
Apparently whilst paying attention, I realise just how many bones sublux [I learned a new word, isn’t it pretty? I used to call it clickiness.] during the course of my day. My knee for example flicks to *almost* out quite often. It isn’t quite as painful as a full dislocation, but certainly enough to jolt you back to reality eand make you change position while massaging the fuck out of it.
However, the main thing that a diagnosis gives you, is the right to talk about it.
This shit isn’ t all in my head; brushing my hair is a really fucking exhausting job, even though I cut it short because I was too exhausted to hold my arms up to brush it when it was long. My wrists and fingers do hurt. Some days I am too tired to think straight, even if the kids had a good night.
Because I’m not ‘faking it’ or ‘attention seeking’ or ‘lazy’.
It takes a huge amount of willpower to switch seven years of thinking around and start paying attention to your body. To stop ‘pushing through it’ and start listening to yourself and taking care of yourself.
To realise that this isn’t going away and plan how to minimise it’s impact on the rest of your life.
[Currently recommended: Physio, swimming, low impact exercise, healthy diet… anything else I’ve forgotten?]
I suspect that quite a few doctors in our Tasmanian health system are going to get a crash course education in Ehlers Danlos and the effects and symptoms thereof. My family is not a small one and it appears that David is affected as well as my father’s sisters and possibly their children. [Although, Dad’s baby sister is on the mainland, not down here.]
More to the point, because it is an autosomal dominant gene, it means that the children of affected parents, have a 50% chance of inheriting the gene.
We’re breeding an EDS army down here. We’ll come after you with our shaky joints and we will poke you with our poky fingers. Yes, that’s right, having a genetic condition doesn’t mean our fingers are any less poky. It just means that some of us might hurt ourselves in the poking.
So THERE.
aww hun..
sorry to hear..
i hope it all gets better for you..
how are you and kids and all?
I get the ‘sublux’ with my knees a lot – freaks the hell outta me!
((hugs)) honey, here’s hoping your little uns dont have it eh? x
Marylins last blog post..Hair grows… hair grows… hair grows…
Swimming is good, right? Then it only makes sense that soaking in a tub with candles lit and a glass of wine nearby is better.
XXOO
Rees last blog post..Grace in Small Things: 19/365
So there indeed. You also have poky elbows and you used to have a bony bum as well hehehehe
frogpondsrocks last blog post..Weekly Winners…
If I start to run away now, I might just get a head start on you before you hit the mainland with your poky fingers 😛
Jaynes last blog post..Whoa Black Betty (trivial bam a lam) whoa Black Betty (history bam a lam) Black Betty had an April 27 child (bam a lam) damn thing’s gone wild (bam a lam)
I understand Veronica. Unlike all the baby stuff (which I will understand in a few months) I can sit here and nod my head because I had a partner who had it and sometimes it made me mad at him even though it wasnt his fault. Sometimes I felt like he was playing on it so I had to do everything. So I understand how frustrating it is being from the partners point of view. One day he dislocated his knee and fell down the stairs and couldn’t get back up. Being so active myself I just wanted to scream at him because I thought of course he can get up. But he really couldnt.
Tanyas last blog post..Kicking Peanut
So when are you getting your Electric Scooter? Must be easier to drive than a car? A trailer on the back for the kids and away you go lol! All funnies aside, I do hope that Amy and Isaac are free of this syndrome.
PS Ree’s idea sounds like a good one too!
AND THE NUMBER ONE GREAT THING ABOUT GETTING A DIAGNOSIS IS……….. you can have FUN with it and laugh about it… Love to hear your humor….
Just a moms last blog post..CATHERINE GAVE THE KITTIES A TOY
While reading this I thought of several things to say, but they’ve ^ all said it for me, so I’ll just go away and sulk now………
Ah, so that’s why we’ve never seen your second head – you bend it out of the way for photos 😉
Our good Nathan is going to have to learn the techniques of effective massage. And you are going to have to start taking it a little easier on yourself. But you seem to know that already. Good for you. Because I KNOW what you go through, and I understand your pain.
I just wish I could make your pain, and HER pain, go away.
lceels last blog post..Silk Purses
I guess bendiness isn’t all it’s cracked up to be. Take care of those joints!
Cats last blog post..Stroking the Shift Key
hah! EDS army! You and who’s army?! Oh, THAT army. Here’s to hoping that any coping methods you use will give you strength to wage that war.
Oh, and short hair cut? WHERE IS THE PHOTO?
Beas last blog post..The Monday that was.
You know, I SO get this. I have a different and ultimately much more merciful genetic disorder – Coeliac Disease – but before I was diagnosed, I spent years feeling sick and exhausted and sporting weirdo symptoms and being told it was all in my head. Eventually I stopped talking about it because, yunno, I was sick of being branded crazy and malingering.
Now I know what was wrong all those years and it is such a relief to be able to say “I’m feeling really off today, think I must have got glutened yesterday” and have people around me understand and not disbelieve me. It also makes me much less anxious knowing on my rare bad days with it (which only occur when I’m careless, and accidentally ingest gluten) that I understand what’s going on and that it will pass.
As for doctors belittling and disbelieving you … be angry, and let them know. I did! (All but my beautiful current GP, who was also my pregnancy doctor, who was the one who diagnosed me).
Kathys last blog post..Menu Plan Monday – Winter is Coming
Oh yes, (thanks Bea) where is the short hair photo??
Oh, sweetie.
It’s hard to take it all in, isn’t it?
Hard to accept after all this time that there really is something.
Hugs.
tiffs last blog post..Blessings.
You’re so right about the awareness. The upside being that eventually that awareness sort of becomes a secondary thought process and you’ll just get on with your day in a slightly different way. Instead of say ignoring pain/fatigue/muscle weakness/whatever joyful symptom your body invents, carrying on and ending up in a sick, collapsed mess the awareness means eventually you’ll just adapt. Feel over tired/lightheaded/dizzy, no problem that’s autonomic so fluids and feet up, caffeine and a bit of sugar if it’s really bad. Shoulder’s irritated, cut back on computer time, etc etc.
The period directly after diagnosis is a tough one, but with a supportive family like yours I don’t think it’ll be long before you all just ‘bend’ and go with it. (I know, I know I just couldn’t resist!)
BG x
So glad you’ve got some answers, I bet the family is also pretty glad huh?
Anything preventative you can have the kiddos do so they don’t hurt as much when they get older?
talinas last blog post..6 weeks until the baby wait begins…
I’m with Ree – sounds like a damn fine idea.
I’m going to be careful what I say in future in case your pokey fingers (and elbow and bum apparently) can stretch over the internet.
My husband’s knee does the sublux thing (thank you for a new word) – it always scares me stupid because it obviously hurts him a lot.
Barbaras last blog post..120/365 – Brave
You’re breeding an EDS army? That’s freakin hilarious! I am glad you see some humor in the situation. I’m eventually going to create a 2nd blog to talk about my daughter’s experiences with EDS and then one about my son having Asperger’s Syndrome (who also has EDS, but no problems as yet).
Pop and Ices last blog post..Jesus Come Heal Me!
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