Sleepless Nights

Author: Veronica

  • The post in which I get a little anxious and maybe go a little insane. It’s fun being me.

    We had a Paediatric appointment today, for the children. We left with a barrage of referrals for various specialists.

    In no particular order,

    – A referral for both children to see a Geneticist and be officially diagnosed with Ehlers Danlos Syndrome.

    -A referral for an Opthamologist to have their eyes tested, as EDS can cause eye issues.

    -A referral for them to see a Paediatric Physiotherapist so that we can help prevent problems before they occur, as well as making sure Isaac is developing at a normal rate.

    – A referral for Isaac to have allergy testing to try and hunt down the cause of his weeping bleeding eczema, that incidentally cleared up when we stopped eating all gluten. So we’re suspecting gluten is the cause, but testing to pin that down.

    -A referral for Amy to have an ECG to establish a Mitral Valve baseline.

    And finally, last but by no means least,

    – A referral for Amy to have testing done for Coeliacs Disease.

    It’s that last one that has me wandering around muttering ohgodohgodohgod. Because to test for Coeliacs Disease, she needs to be eating gluten for 3 weeks before the blood test is done.

    The blood test is scheduled in 3 weeks. She had her first piece of bread today.

    I’m fucking terrified. Do you have any idea how bad it is here when Amy is eating gluten? She has meltdowns and tantrums and ohmyfuckinggod.

    Three weeks.

    I can’t shake the feeling that three days into this, they’ll be admitting me to a nice quiet padded room somewhere.

    Saying I’m terrified is an understatement.

    She’s not a nice kid when she’s eating gluten.

    Scratch that, she’s a demon hell child when she’s eating gluten. Her eyes glow red and her head spins and she screeches with a voice that could make small animals die.

    This is not going to be a highlight of my life.

    On the upside, bread! And dip! And like, bread! And stuff.

  • Washed away

    So for the last few days, it’s been raining.

    And raining and raining and raining.

    Did I mention the raining?

    The river, that runs about 1km away from our house broke it’s banks and we spent just a leeeetle bit of time peering at it concernedly. Eventually it turned out we were looking in ENTIRELY the wrong direction, as it broke it’s banks closer to the house and flooded a paddock or two.

    Not my paddock though, I didn’t need a river to flood it. A badly drained highway will work for that.

    I haven’t been out into my paddock since the rain ended, but I have stood and looked at it. I looked at it hard. Unfortunately, simply looking at it didn’t drain the water, nor did it dry up the ankle deep mud that is everywhere. Or the puddles Amy keeps escaping to splash through.

    Anyway, the water that ran in off the road made it’s way in a steady stream through my yard. Where it ran under the house. I’m too scared to look under the dining room, although I can guarantee that there is a pond under there.

    Another pond that is.

    Two sides of my bedroom got a little soggy. Just a little bit though. I mean, it wasn’t like there was water seeping up through the carpet.

    Oh wait. There was.

    But today! It’s sunny! And I weeded the garden and picked all my leafy greens for lunch and reduced half a dozen dislocations, all at once. I’m making the most of the sunshine, because the rain is meant to reappear later this week.

    And honestly, I’m not sure if my yard will cope with anymore rain. We might just drown in a pit of mud.

    Which would be less than pleasant.

    My front paddock

    My front yard.

    Flooding River

    The river, after the levels started to drop.

  • Anxious

    My breath catches in my throat and I’m breathing consciously to get through the moment. My heart races and the familiar feeling of anxiety settles deep into my chest. The world around me fades slightly as I focus inwards, on my own internal struggle to get this under control.

    My focus shatters as Amy steps on Isaac and tips forwards onto her hands and knees crying, while he screams his displeasure at being trodden on. The dog bites the cat, who runs away knocking dishes off the sink.

    Everything lands in a big heap at my feet and I’m left with scattered plates, screaming children and no sense of peace. The world continues on completely oblivious to me.

    I pick up my children, comfort them, make Amy say sorry. I stand and swearing, I clean up the plates, dust off my coping strategies and just move forwards.

    One step at a time.

    ***

    I’m stressed is what I’m saying.

    Quite a little bit.

    The anxiety attacks are back with a vengeance, coupled with a complete inability to actually cope with anything.

    I’m spending a lot of time swearing under my breath and stomping around the house.

    ***

    I turn the music up loud to drown out the whining and scrub at the bench. If I can just get this clean then everything else will look better and ohmyfuckingGOD.The mess just keeps coming and coming and I’m not sure I could walk through the lounge room without breaking an ankle.

    ***

    Just stop whining. Please, just stop.

    You’re tired? Here, curl up on the couch with a blanket.

    No, you can’t watch a DVD, you broke the DVD player.

    You want a bottle? But you’re a big girl.

    I know Isaac has a bottle, but he’s a baby.

    Oh. You’re a baby now too.

    That would explain the whining.

    Can you stop sitting on me?

    Please?

    Amy, get off me. You’re hurting me.

    OY! Don’t pinch me! What a naughty thing to do. Time out! NOW.

    You’re sorry? I don’t care. We don’t pinch. Time out.

    Now.

    Time out.

    Walk.

    Now.

    Don’t go boneless, I’ll just pick you up.

    There. Sit there. 3 minutes. We do not pinch. At all ever.

    Isaac! I know I’m ignoring you, that’s no reason to squeal.

    You’re tired too? Well here, nap time.

    Boobs.

    You don’t want boobs? You want to look at your sister in time out?

    Isaac, fortheloveofgod just feed already.

    ARGH! No biting! You’re not hungry.

    Bedtime.

    You. Back in time out. I didn’t say you could move.

    No whining. Stop it.

    Sit.

    Sleep.

    Shutup.

    Please.

    ***

    I love my children dearly, but they’re very needy at the moment.

    Like –

    really needy.

    And I’m not sure I can breathe, underneath this mountain of need they have.

    ***

    I knew this would happen. The crash.

    Nan died three months ago and for that three months I’ve been caught up in merely moving from one moment to another without thinking about myself. Just getting things done for this family of mine.

    Caught up in the coping.

    And apparently, the grief has caught up with me.

    I miss her so fucking much.

    So fucking much.

    ***

    There is stress on top of stress down here and there are only so many balls I can juggle before things start to fall on my head.

    ***

    So I’m turning up the music.

    I’m putting one foot in front of the other.

    I’m hugging my children.

    And I’m letting myself grieve.

  • 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.