Sleepless Nights

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  • Feeling Supported

    Even thought my GP had doubts about it helping, I went and saw a new physiotherapist the other day. My other physio, if you remember, set me adrift, slightly overwhelmed with how extensive my EDS is. She was nice about it, but it was a letting go and I was left floating along, not really sure where to turn.

    The new physio, she’s had training in dealing with hypermobility. She knows what Ehlers Danlos is and while I don’t think she’s treated a case before, she knows how to.

    My point is, she’s experienced.

    Which incidentally, is exactly what I needed.

    She pointed out that my proprioception is pretty awful [apparently I’ve got feet and if I don’t think about them, they bend really strangely without me noticing] and that I’ve learnt how to cheat in order to stand up without falling over [trick: constantly focus my eyes on only one thing].The proprioception thing explains why I can’t sleep in the dark and why trying to walk in the dark is like trying to walk across a pitching ship deck.

    She had me stand on one foot and close my eyes. At which point I promptly fell over. It wasn’t a big deal, I was standing supported by bars at the time, so it was more of a wobble, eyes springing open and both feet on the ground than an actual fall.

    I walk … strangely. Like a ballet dancer, all toes and along the outside of my feet. Funnily enough, I’d never noticed. See above re: proprioception.

    I’ve been referred off to a podatrist in order to get orthotics fitted. She seems to think that straightening up my feet should help with my hip and knee problems. I agree. Which um, why did no one else think to mention that maybe my hip problems are caused by my feet?

    I’ve been given two minor exercises to practise as often as I can. And before you start thinking that 2 isn’t much, by the time I’ve stood on each foot for 20 seconds and looked around [to try and help my proprioception, the looking is to stop me cheating], I’m exhausted. I have to sit down and recup.

    Which you know, mostly sucks. But in the long run it will help, so I’m standing on one foot and looking around lots. I sort of look like a carnival clown.

    I mentioned the children and she thought that physio for them was going to be the best thing I could do. She has a hypermobile son, so she understood where I was coming from when I spoke about how worried I am about Isaac [coming up in a later blog post: listen to me worry about my son. lots].

    I left the appointment feeling supported. Like she knew exactly what she was doing and that everything she was doing was going to be in my best interests.

    She understood me and where I was coming from.

    It’s been a long time since a medical professional gave me that.

  • Useless Books

    There is a bookshelf in my house. It reaches to the roof, tall and thin. It sits in a corner of the dining room, slightly wobbly but bolted to the wall to stop it falling over.

    My father made this bookshelf, a few years ago, for Nan. He made it to cover a useless doorway, boarded over on the outside but visible and ugly on the inside. Shortly after it was installed it was filled with books, top to bottom. I used to stand and peruse the books, picking them up, hefting their weight in my hands, stroking their binding and then curling up with one to read.

    Then Nan died.

    And this bookshelf; the bookshelf my father made, got moved into my dining room along with all it’s books. The bottom four shelves still contain her books. Books that I used to read of a weekend, books she loaned me, books she was reading in the hospital before she died.

    I can’t touch them. I can’t bring myself to stroke their spines anymore, let alone pick one up read it. There’s too much there, too many memories.

    I look at the bookshelves and I have to walk away and remind myself to breathe. My stress levels rise and I start to shake. I have to walk away, leaving the books untouched and the stories unread.

    I know it will get easier.

    But.

    Until then, it just sits there.

    In the corner.

    Wobbling.

    ***

    I’m starting to get a little bitter. My anger is rising to the surface. Things haven’t been made easy for Mum and I in the last three months and there is still so much work left. The jobs stretch out on front of us, marking time until the house is sold. It’s never ending and never easy.

    It’s been …. stressful. To say the least.

    I’m a little bitter.

    ***

    My shoulder clicks back into position before promptly falling out of it’s socket again. Electric signals sent down my fingers with alarming regularity reminds me that it doesn’t work properly, not anymore.

    For that matter, neither do I.

    ***

    Lileya from In The Fringes wrote:

    There is a fine line between trying to look on the bright side and putting on a happy act.

    and that is so true. That line, resonates within me.

    Too often I put on a happy act.

    I’m not okay. I’m sick and tired and my joints hurt and nothing stays put anymore. I’m grieving still. A lot.

    And I’m sick and fucking tired of having my grief mean nothing because she was ‘only’ my grandmother. I’m sick of having my pain discounted because you can’t understand it.

    I miss her everyday.

    My joints dislocate everyday.

    Every. Single. Day.

    So fuck you Anyonetoblog. No really, fuck you. You can’t be bothered to see my side of it? I can’t be bothered to be nice anymore.

  • Isaac and sleep issues.

    Bendy Girl said something on my last post about Isaac and bedtime that made a lot of sense.

    Bendy Girl says:

    Poor proprioception might be something to do with why he still needs to be swaddled. Even now I can’t sleep without heavy enough bed covers to feel the pressure on me, I can’t feel the lighter covers & it makes me feel just ‘wrong’ can’t explain it any better!
    BG xx

    Which (again) was like a light going off in my head. I can’t sleep without heavy covers either. It makes summer less than fun, but it’s not that bad as I’m cold most of the time anyway.

    I thought about it and I agree. Isaac does had terrible proprioception. He has no idea where he is in relation to himself, which is fairly normal is a baby. They do grow out of it, but I’m assuming because of the Ehlers Danlos that it will take Isaac a little longer than other babies. He definitely has more issues than Amy did at the same age, but that’s another post all together. It’s also why the kids are being seen by the Paediatricians at the hospital, rather than their medical care being solely overseen by a GP.

    Keeping this in mind, last night I wrapped Isaac in one of our largest blankets that he loves. Sure it’s pink, but I’m pretty sure he doesn’t care. One he was wrapped (and sleeping and moved to his cot) I covered him over with a heavy blanket folded in 4 like Mrs C. suggested.

    And then?

    He slept through the night.

    From 7.45pm to 5am he slept without a peep. At 5am when he woke up I fed him and he went back to sleep (easily!) until 7.15 when Amy screamed for me to wake up and woke him as well.

    I was a little grumpy with her.

    Fingers crossed that it wasn’t a fluke and that doing the same thing again tonight works.

    Cos uhm, yay.

  • Bedtime

    I place him down in his cot, firmly swaddled, awake and alone. Flicking the light off, I try to leave. For a moment, silence reigns before he unwraps himself and starts to babble. I walk out anyway, hoping that he doesn’t notice my exit.

    He doesn’t. At least, not yet.

    I sit down, revelling in the silence.

    It doesn’t last. It never does. Amy clings to my leg and Isaac starts to squeal. There is no sleep here; not yet anyway.

    Isaac starts to cry as Amy dances around in circles. Nathan’s computer game starts up, much louder than it needs to be. Sometimes I wonder if he needs his ears checking, that’s how often I find myself turning things down.

    For a moment though, it was quiet.

    It’s almost bedtime and then, I can wrap myself in the quiet.

    The noise of heavy breathing as everyone sleeps. Snuffles and sleep talking.

    I can’t wait.

    I like bedtime.

  • Small things:

    Nathan dislocated his thumb today while we were doing minor home improvements.

    The nice side of me went ‘shit! are you okay? show me? no, it’s back in, do you want a bandage?’

    The bitchy side of me went ‘see? now you know what it’s like. i do that multiple times a day. maybe you’ll be more sympathetic next time I tell you something’s popped.’

    The nice side of me won. I bandaged it and made sure it was fine. Poor baby.

    Heh.

    ***

    Remember the birds that fell from the sky? Apparently they’ve been dying of Salmonella.

    Which of course can be transmitted to humans, dogs and cats.

    All of which currently live on my property. With a metric shitload of sparrows.  And tank water.

    The joys.

    If I start vomiting, I’m declaring war on sparrows.

    Actually, I might do that anyway, vomiting or not.

    Death to sparrows.

    Just not salmonella death.

    ***

    Today I’m guest posting over at Sarcastic Mom’s. Sure, I wrote it when Isaac was 5 weeks old and I was sleep deprived and bitter, but oh well.

    Go read it.