… and headaches.
Orgasms.
You’re welcome.
Author: Veronica
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Hypersensitive
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.
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Seven Years
Seven years ago this February I got sick.
Seven years of doctors visits.
Of being told:
‘It’s all in her head.’
‘She’s pulling the wool over your eyes, she just doesn’t want to go to school.’
‘Her tests are clear, how is her relationship with her father?’
‘She’s anorexic.’
‘There’s nothing. Go home.’
‘Go home.’
‘Can’t help.’
‘Nothing there.’
Seven years.
Seven years of nausea.
Of joint pain.
Of dislocations.
Of exhaustion and muscle fatigue.
Of trying to tell doctors that other family members of mine have the same symptoms.
Of being given a diagnosis of Chronic Fatigue Syndrome in order to call it something, just to make us go away.
Seven fucking years.
Lots of doctors. Lots of tests.
And nothing.
Today though, today I walked into a doctors office and walked out with a diagnosis.
I was told, ‘It’s a straight forward case. It’s a clear diagnosis. I am 100% certain that this is what you have.’
I was diagnosed with Ehlers Danlos Syndrome today.
And while it’s not a fantastic syndrome to have (dislocations, joint pain, no cure, etc etc), ANYTHING is better than being called a liar. Anything is better than being told you are faking it and to go away and come back when you are truly sick.
Anything.
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How to…
…write a blog post with 2 children, a partner and a dog all at home bothering you.
Find some time to sit down with your laptop. Try and ignore the steadily increasing pile of clean washing that needs folding and look dead ahead at your screen.
Think.
Think.
Think.
Settle Isaac down for a nap under his activity gym, because if he isn’t complaining about laying under there, why rock the boat?
Feed Amy lunch.
Send partner outside to have a damn smoke already and stop looking at me like that, I swear I’ll help with the housework in just a minute and seriously dude, you’re not working anymore, what’s with all the martyrdom?
Close laptop lid and resettle Isaac because Amy nearly fell on him just as his eyes closed.
Wonder why on earth you never thought of settling him under the activity gym before. Wonder if it would work all night. Wonder if we need a mobile for his cot.
Lament the fact that Isaac likes falling asleep with the blankets over his head. Wonder if you will ever stop panicking when you wake at 2am and can only see a lump of blankets next to you instead of a nicely sleeping infant’s head.
Give Isaac back his dummy.
Lather, rinse, repeat for the next 10 minutes. Start to wonder if 10 minutes ‘rest’ is actually enough for him.
Close laptop lid and get up to check on dinner. Get distracted while you are there and make yourself a cup of tea. Get distracted once the tea is made and forget to drink it.
Come back inside with a grubby toddler in tow and remember your tea. Also your blog post.
Sigh.
Open laptop again.
Think of a topic. Something deep. Something humorous. Something fun.
Give up because one of the children needs a nappy change. Curse toilet training regression. We were NEARLY there and now, nothing.
Sigh.
Close laptop lid and check dinner again. Not cooked yet. Thank god you remembered to put it on to cook early enough.
Have partner cover you in random couch cushions. Wish that the kids weren’t awake so you could turn it into some sort of game and make it fun at least.
Remember that blog post you started an hour ago? Still sitting there. Get distracted checking your reader and trying to comment on blogs. Give up commenting and just read. [Hi guys]
Wonder if showering alone is actually counted as alone time. If so, that sucks.
Resettle tired baby. 30 second cat naps appear to be his forte. Curse the genetics that gave you non-sleeping children.
Try and write something while breastfeeding. Fail.
Give up entirely and write about your last few days of trying to write a blog post instead.
Press publish and try to ignore the fact that you suck.
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Maybe it’s Amy’s wabbit?
Amy awoke this morning to find a chocolate rabbit and an egg sitting on the mantlepiece.
‘OOOOOOOOH!’ She goes. ‘Chocowate!’
‘Look’s like the Easter Bunny came.’ I replied.
She looked at me strangely.
‘Because it’s Easter, the Easter Bunny comes and brings chocolate eggs.’
[Yeah, try explaining THAT logic to a 2yo]
‘Maybe it’s Amy’s wabbit…’
‘Of course it’s Amy’s. The Easter Bunny brought it for you.’
‘Maybe Amy have the wabbit?’
‘You can have the rabbit.’
‘YAY! YIPPEEE! WOOHOOO! AMY’S WABBIT!!!’
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We received a parcel from Sharon in Western Australia yesterday. As soon as Amy saw the pink jumper Sharon had knitted, she immediately declared it a ‘Princess jumper!’. I think the jumper is going to be much liked. Isaac got a jumper too and it will fit him beautifully. Thankyou Sharon.
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We bought a Wii Fit the other day. It took me until Nathan and I played on it to stop feeling guilty about spending the money.
However? It’s probably one of the best things I have bought. I feel so much better for doing the exercises each day.
And I mean, when everything is going to shit around you, the least you can do is exercise, right?
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Nan’s chemo is knocking her around pretty badly. She’s terribly sick with it and it’s so hard to watch because dammit, I just want to make it better. Or easier. Or something.
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