Author: Veronica

My physiotherapist is lovely. No, really, she is. Funny and amusing and everything.

I still walked out of the appointment with a good case of bleh though.

We sat down and she asked about which joints were affected. I may have laughed a little bit and asked where she wanted me to start.

From the top.

Okay.

So, I started from the top and worked my way down. By the time I’d listed ten or so joints she was looking overwhelmed and I hadn’t even made it down my arms! She’d run out of room on her sheet by the time I got to my feet.

I’m pretty sure I still forgot things.

She took a deep breath and I could almost see her brain ticking over as she realised that this was a much bigger job than she thought it was going to be.

I could have told her that.

She had me walk along the hallway while she watched. My ankles/knees/hips obliged me nicely by clicking loudly with every step.

You click lots.

I know.

Twist for me like this. Now this. Okay, this? And now this. Hmmmm. Wow, you really are quite flexible.

I know.

Then we laughed.

Because dude. I know.

We fitted a wrist brace, as well as a knee brace. I couldn’t afford the knee brace today, so we settled on more support bandages. They’re doing their job well enough, so that will do for now. I need to think about ankle braces, because really, I’m sick of being tipped sideways as my ankle rolls. There is nothing more sexy that a sudden stumble as you walk down the steps [across the room, through the supermarket…]. Suggestions? Anyone? (BendyGirl, Carol, Achelois, I’m looking to you for suggestions)

Next week we’ll be looking at half an hour of core stability exercises and half an hour of Pilate’s.

But I’m still bleh.

Maybe because while she was lovely, she didn’t really seem to have any advice or ideas about what to do to minimise long term impact. I know that she is more used to working with sporting injuries than long term floppiness, but still.

[I know that today was just an initial consult and that she might spend the next week working out a Very Big Plan. I know this.]

It just would have been nice to walk into there and find a physio who had a definite plan in mind already. It’s great that I am so active in my own medical care, but sometimes it’s also exhausting. I’d love to pass the reins to an expert, if only for a little while.

Although I’m still a little amused at just how her face looked after those first ten joints with issues still hadn’t made it down past my hands.

And right now?

I’m researching just what kind of dye I need to dye an icky tan coloured wrist brace a decent colour and also what colour I want.

Feel free to input suggestions.

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.

I knew it was coming. It’s actually been creeping up one me slowly for the last 6 weeks or so, but I’ve been pushing through it. The kids need food and the floor needs vacuuming because honestly, while I can look the other way when Isaac eats a tissue (clean? dirty? ummmm, you tell me…) I can’t ignore him trying to chew his way through Amy’s left over cereal she spilled (it was dry cereal. So sue me) as he gnaws on the dogs leg and we all sneeze our way through the dust.

I’m crashing.

The pain in my hands is getting worse. I’ve been spending an awful lot of time wandering around clutching alternate wrists and rubbing them. Panadol has been disappearing like lollies as I just get through today.

Horizontal parenting has been my friend as I need to lay down right now. Isaac wiggles all over me while Amy jumps on the both of us and we all lay in front of the fire while I pray no one needs anything because standing up might make me pass out.

And today, I think I’m done.

My blood pressure has been so low that by the time I had the kids in bed, I fell onto the couch and told Nathan I was dying. Heh.

Now Nathan. I love him, but he can’t read my mind. Terrible flaw in a man if you ask me. I have to actually (GASP) tell him exactly what I need to make me feel better. So I flopped all over him with my feet higher than my head to prevent me passing out and requested the things I need to feel better.

A sandwich with the left over roast lamb. Lots of salt to get my blood pressure back up. And salad dressing because I wanted to pretend it was my go-to cure of cucumber, salt and vinegar.

A pillow to raise my feet until I stopped feeling like my head was just going to float away…

Oh and some panadol. And a cup of tea to wash them down.

Surprise surprise, if I give the man concise directions, he’s pretty awesome. I think I’ll keep him.

So crashing. Everything hurts and I can’t seem to hold a train of thought very long. Isaac has gotten incredibly heavy and omg Amy please don’t jump on me. I can’t catch you today.

Bleh.

I’m going to go and hide under my rock for a little bit.

Have some photos to tide you over.

On the upside, Amy pooed in the toilet for the first time ever. I’ve never been more pleased to see poo.

Photos of the kids next time. Lately they don’t sit still long enough for me to take any good ones and I don’t have the energy for chasing.

Oh and Mum is hosting a give-away. You should go and enter.