I picked up a pen today to write in my journal. The further I got down the page, the worse my handwriting got, until at the very end, my hand sort of collapsed and I gave up.
I’d written maybe 40 words total.
I spent the next hour massaging various bits of my hand back into place, while clutching it to my chest. It’s still sore.
I start physiotherapy tomorrow. The rational side of my brain knows that it will be fine and that we will get things moving for some braces for my worst joints. The irrational side is telling me that I am faking this, that I’m not really sick, that I don’t have anything wrong and to buck up and grin and bear it already, you faker.
Seven years of being told by medical professionals that nothing is really wrong has that effect on a person.
It’s also a shift in my perception of myself. My wrist needs bracing and no matter how I go about it, a wrist brace will be a very visible sign of something ‘wrong’. I’m not sure how to handle that. Making the invisible visible with external aids.
I’ll still be me. I’ll just be me with accessories. Ehlers Danlos Barbie; now comes with joint braces and a side of pain killers. Walking stick sold separately.
I sat down to type a list of joints that dislocate and sublux today. After I’d listed just about every single major joint in my body and some minor ones too, I gave up. Instead my bit of paper now says most of them. fix me.
Tomorrow.
***
I had Pink playing on the computer as I pottered about the house yesterday. Amy started singing.
So what, I still a rock star, I’ve got my fuck you…
[actual lyrics: So, so what, I’m still a rock star, I’ve got my rock moves… I see where Amy got confused]
I left the room.
I nearly wet myself laughing. I laughed so hard I spat my cup of tea all over Nathan and the clean washing. I’m glad I wasn’t in front of the computer.
She’s brilliant. Funny. Frustrating. Exhausting.
She’s almost three. Where did that time go?
***
Nathan went and got my camera out of the bedroom this afternoon.
Honey, why won’t your camera turn on?
I grabbed it. I fiddled buttons, I switched things on and off. I got steadily more stressed and nauseous.
You got it out of it’s bag? On top of the cupboard? I DON’T KNOW! It was working when I used it a few hours ago! What did you DO?!
I nearly died.
It’s battery was flat. A quick battery change later and I was breathing easily again.
Please, don’t do that to me again.
***
Oh and more photos. Because I’m enjoying sharing them. Suck it up.
Oh Amy, you crack me up! Hoping the physiotherapist helps you. Alot.
I mean the pain and the not being able to do stuff must really be so awful. Thinking of you. (I just hit publish too soon).
Pink must be the singer of choice for the 2-year old set! Amy is funniest, but last week, after leaving the kids with my MIL for a couple hours I was wandering around the house singing, “Please, please don’t leave me….” and Bad chimed in “please, please don’t leave me…with Grandma Judy…” My kids drive me to the brink of insanity nearly every day, but I don’t know what I ever did without them.
Hugs.
I really hope the physio helps sweety. Love the photos, and Amy’s lil song was awesome! XD
I hope the physio provides some real benefit for you. I often get quite irritated with mine. I thought of you the other day – and mentioned you to my hubs – b/c we were doing some DIY and my elbow partially dislocated. I think you are sending me vibes from over in Tas to make me more loose and bendy – ’tis the only explanation!
Ooh, and the 4yo LOVES that song. He hasn’t changed the lyrics as skillfully as Amy though!
The trick is to be able to strengthen muscles to do the job the connective tissue isn’t doing properly. Easier said than done – because in order to strengthen the muscles, you have to use them – doing things that will, for the most part, cause subluxations and dislocations – until the muscles are strong enough to slow that process down.
That said – swimming is good. It removes the effects of gravity on your body and provides passive resistance exercises.
Hope the physio is successful! Swimming does sound like a good option – when it’s warmer!!
Oh good luck tomorrow! It may take a while to realise that this is a good thing but I’m sure after a few sessions you’ll be all “why was I ever worried?” kind of thing. I must admit that I didn’t know what sublux meant until you mentioned it. 🙁
OMG, I thought you were going to say that yr camera broke!!!!!! PHEW! Did the remote arrive yet? I need to get myself a tripod and I’m certain I’ll use it a lot more. Great for very long exposures 🙂
You also come with ken doll and 2 children. I cant remember what barbies children are called. Is your house pink?
photos = awesome
Amy singing? CLASSIC.
Jordon does a lot of great ones too, like Pokerface by Lady Gaga, he substitutes ‘pokerface’ for ‘cola-face’. Our dogs name is cola.
and he also loudly sings ‘Lets have some fun, this beat is sick, I wanna take a ride on your disco stick’ in the supermarket.
and ‘you and me baby aint nothin but mammals, so lets do it like they do on the discovery channel’
I like Amy’s lyrics much better.
LOL, Amy! She can only guess at lyrics with words she’s familiar with, I guess, ha!
Pretty pictures, so pretty!
Hope the physio helps. Hey, you can wear those braces or you can let them wear you, you know what I’m saying? okay, yeah. Neither do I. Paint them purple or something. Like you mean it. 😉
Good luck at the physio. I hope he helps you.
I know you’ve said it before probably, but what kind of camera do you have again? You do take a lovely shot.
the photo’s are gorgeous! i had the same panics when i first got my camera and the batteries died. lol
i’m sure things will go well for you tomorrow, i just went through it all myself two weeks ago, and it is soooo weird finally having people treat me like i’m not crazy/lying/lazy teenager.
i need to get wrist braces too for when i sleep, and maybe for all the time. i’ve been worrying about everyone being able to see i have issues with my hands, since soon i’ll be wearing splints on all my fingers all the time. at least they’ll be pretty! and whatever right? who cares, is what i keep tellin myself.
p.s. i cannot believe amy is nearly 3!
I’m so sorry you’re going through all that with the EDS. I hope the therapy helps you.
Scared me there at the end thinking you’d lost another camera already! Your photos are lovely.
Loving your photos… laughing at your girl… and sending hugs for the difficult bits.
The physio WILL help, you WILL deal with it with your customary wit-and-fuck-you attitude and we already had the splints discussion – dye them! Come Veronica, you can do this. We’re all out here willing you on even though we can’t do much else for you. Build up those muscles and it will all be at least a bit easier.
Amy – pure genius, you should try to record the new improved lyrics.
Photos – beautiful, and I bet the camera scare put your BP up a bit 😉
Hugs, lots of them, special non-dislocating ones!
big hugs hun
hope physio helps..
thinking of ya.. 🙂
Is that moss in your photo?? How good is that camera!! HaHa at Amy; l likes Pink too, I gave him the Funhouse cd for his birthday recently. He plays it when I’m at work because I don’t really like it. So you’ll be wearing braces hey? You’ll be used to them in no time and they’ll help a lot. anythings that helps you “keep it all together” has to be good, right?
That’s not “I” likes Pink, cos I don’t, it’s L likes Pink.
I love listening to my daughter sing lyrics wrong. Especially when she gets them as wrong as Amy did and winds up communicating something else entirely!
Oh Amy, you are a funny girl!
You scared me silly with your tale of possible camera loss (again). Thank goodness it’s ok and you are able to share your fab pics.
Best of luck with the physio – as with most things in life, help should always be accepted even if it doesn’t work straight away.
I was scared FOR YOU and your camera. Think the phrase is ‘straw that broke the camel’s back’. Thank goodness for Duracell!
Hmmm am amazed that you cant write 40 words yet you can type till the cows come home…. is this just writing for profit or just a sympathy blog………..god only knows
@ Anyonetoblog: WTF
…someone clearly needs a bit of “rock moves”
Amy is a rock chick in my books. Go girl!!
Woo! Those are gorgeous photos! I love the shot of the moss. I have been taking lots of closeups of flowers and plants — a very nice change from rocks and desert. Of course, in a little more than a month I can take photos of SNOW and more SNOW again…
I hope the physio works. Really well. And really fast.
Your blog is great and I really like your photos. After reading how it hurts your hands to write I thought I should mention ring splints. Have you tried them? They go over your finger joints, keeping your fingers from subluxating. They look kind of like a bent oval eight. I’ve seen plastic, silver and gold ones.
Hope your hand improves. It isn’t a mental pain, it is physical.
A massage or acupuncture session would also help calm your nerves and the pain in your hand. Pain is part mental and physical.
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