Sleepless Nights

Author: Veronica

  • Ehlers Danlos and Nausea

    Probably one of the hardest things I find about dealing with EDS is the incessant nausea. It’s one of those things, that if the nausea went away, the rest of the EDS would be easier to deal with.

    But add nausea to extreme fatigue, joint pain and constant dislocations and I get a little miserable.

    Some things help – oranges for example. If, when I’m feeling like throwing up, I can force myself to suck on some orange segments, I can usually stave off the throwing up for a little bit. I also have anti emetics, which help with the vomiting, but don’t make the nausea go away. It’s really frustrating.

    Even more frustrating when I talk to doctors (not my regular GP, who prescribes Pramin without blinking) and they can’t understand why nausea is associated with EDS. Aware only of the joint and dislocation side of things, the other symptoms of EDS often get overlooked, or played down.

    Like a geneticist said ‘I have no studies showing incidences of nausea or more dislocations as it relates to a hormonal cycle’ regardless of the fact that anecdotal evidence shows time and time again that a rise in progesterone leaves female EDSers with more floppiness and nausea is a part of EDS for everyone. But of course, if it’s not in a study, published in a journal somewhere, then I can’t POSSIBLY have those symptoms as part of EDS.

    Ugh.

    At least now, after reading BendyGirl’s blog, I know I’m not the only one who vomits after sex! Maybe it’s all the joggling of my stomach, or maybe it’s the hormones released at orgasm, but either way, sex = nausea. Luckily, sex is more than worth it.

    But I digress.

    I’m stuck in a sort of rut with my nausea lately. A mucked up cycle ala a blighted ovum has sent me spiralling back into a 6 week long cycle, with ovulation fuck knows when – day 14 it feels like, EXACTLY where it should be. Unfortunately, that means I get a month of rising progesterone levels before I get my period and they fall off again. Which leaves me retching and feeling like the dead for oh, about 30 days of 42.

    Not fun. Not fun at all.

    When I see new doctors, for whatever reason, I do my best to give them a run down of what they’d expect to see symptom wise from someone presenting with EDS, who didn’t know that they had it. I do this to student doctors, physio’s, nurses, basically everyone in the medical field I can get my hands on. I educate them.

    If you are a doctor/nurse/friend and someone presents with fatigue, nausea, achey joints, headaches, reduced concentration and a general feeling of unwellness and it’s lasting for a long time, months or years, then maybe, just maybe, it’s a connective tissue disorder. Generally, those symptoms above are the ones people notice, because if you’re bendy, being bendy is so normal that we don’t think to tell the doctor ‘On top of all that, I can put my feet behind my head and I’m amazing at yoga and athletic sex, oh and by the way, my joints do this *click*’.

    The other thing I tend to try and educate doctors on is that most of the time, if they can’t come up with a diagnosis, it’s not because there isn’t one, but because they’re not looking hard enough or thinking outside of the box. I never ever want to see anyone else fobbed off with a diagnosis of Chronic Fatigue Syndrome if there is more to be done or investigated. Blood tests are not the be all and end all of diagnostics.

    There. Educating. See?

    When I was first sick and trying to get a diagnosis, because of my vomiting and nausea issues, I was ‘diagnosed’ with just about every form of eating disorder out there. Which was insane, because given a choice (and when I was feeling well) I was perfectly capable of eating bread and jam, topped with whipped cream, all without counting a single calorie or even feeling guilty about it.

    I spent a lot of time then living on pasta with a little tomato soup through it, topped with lettuce and tomatoes. Healthy food and somehow, pasta (gluten containing, sweet sweet gluten) and salad was easier to keep down.

    Nowadays the only pasta in my house is gluten free and somehow, it’s not quite the same, even when I do top it with salad.

    So nausea. Probably one of the more draining sides of EDS. I’m sick of not sleeping because I’m too busy head down in the toilet, or not eating because I can’t swallow without retching.

    Not fun.

    If you’re interested, other EDSy bloggers can be found here:

    BendyGirl
    The Tensile Times
    BubbleGirl
    Everyday Stranger
    MeriLizzie

    (I know I read more than these, but my brain is blanking. Speak up if you’re blogging about EDS and I’ve not linked you, I’ll edit to include you.)

  • Australian Blogging Conference

    With the help of some amazing ladies, Brenda and I have been getting the balls rolling to organise our own Australian Blogging Conference, with a bent towards personal and mummy bloggers. Think BlogHer, but Australian.

    And so, now, we’re asking for YOUR help.

    Yes you. You lurker. And you, my favourite commenters ever.

    We have a survey running, asking which city you’d attend a conference in (Sydney or Melbourne) and the kind of things you’d like to hear spoken about.

    I would really REALLY love if you could fill out a survey and let us know your ideas, so we can finalise some details and get into the nuts and bolts planning stage.

    Survey! Fill it out here. Please.

    With lots of thanks to Karen, Nicole, Brenda and Tina.

    If you’d like to add anything else, not seen in the survey, feel free to add it here and we’ll discuss it.

    I’m excited. This is a really big deal for Australian Personal and Mummy Bloggers.

  • Gardening in winter.

    This winter has been a long cold one garden wise and I am more than ready for spring to come. June kicked my arse a little bit and by the time I’d recovered, July was here, the month of frosts and dry icy days – not much good for growing things.

    So I paid for June’s laziness by not getting any greenery from my garden over winter – which was a total nightmare. The dogs (before they died) dug out the onion and lettuce seeds I did remember to plant and just ugh.

    I’ve been making up for it though, with a full day of planting. Winter isn’t over yet, but I’m crossing my fingers that these little guys will survive until Spring – without the chooks or ducks molesting them. Of course, my ducks can fly, so this might all be in vain.

    So I planted Kale,

    Iceberg Lettuce and Mignonette Lettuce,

    Celery,

    Rainbow Chard,

    As well as spring onions and leeks.

    Also growing I have severely eaten cauliflower. Look what the chooks have done to it!

    And rocket in my hanging basket:

    I still have a patch full of broad beans growing – Amy dumped an entire bag of broad bean seeds into a patch that had been planted with beetroot, lettuce, onion and carrots, unfortunately 100+ broad bean plants choked out my other seeds. Strangely enough, the broad beans have survived, despite -7C temps and cats/dogs/chooks/ducks running over them. Tough little plants.

    I did some modifications to the gate, to stop the chooks and ducks being able to squeeze underneath. Pretty? Definitely not, but so far, it’s been effective.

    I also left the soaker hose on a little too long.

    Although, some of the inhabitants were rather pleased about the rapidly growing mud puddle.

  • It’s really hard not to test when you’re desperate to be pregnant.

    This guest post comes from the lovely Marylin. Marylin and I ‘met’ through the internet when SN and her blog then were only a few weeks old. She’s one of my very best friends. She blogs at Softhistle.

    ****

    Yeah, there we go. I said it.

    I want another baby.

    Reeeally want another baby.

    My OH is happy to oblige, as he would love one of his own.

    We’ve only been trying since April of this year, and I know that’s not long in the grand scheme of things.

    I was just so sure this month.

    My boobs were tender, I can smell the rabbit pee even though he’s just been cleaned out, I keep getting tugging pains down there when I cough and such.

    My period is due tomorrow.

    I have one test left. One of those expensive “can tell before your period is due” types.

    I tried to not use it.

    I really *really* did.

    But… my impatience and need to know attitude got the better of me.

    So now I know that I’m *not* pregnant.

    Yet again.

    When I had my two kids I was pregnant straight away, so I know I’m fertile.

    The OH has never had any kids before, so he’s not sure if “maybe (he’s) shooting blanks”.

    I have no idea to be honest.

    I hope that’s not the case.

    I know that really there is a lot going on in my life with having a special needs almost-3-yr-old, but I can’t help yearning for just one more.

    Just one more chance at having another child who could be normal.

    I know you’ll all hate me for saying that.

    It’s just that life is so different with the 3yr old than it was with the 5yr old. Everything was different and not what I expected.

    I would love the chance at having a child who learns to talk and walk and jump at the ‘right’ ages.

    I want the chance to finally maybe just MAYBE have that elusive little girl that I’ve yearned for.

    Every month that goes by is another month lost.

    I guess maybe it’s just not meant to be…
    _______

    This was written about 3 weeks ago, currently at the start of the 2ww again… oh the joys. >_<

  • Not perfect, but getting there.

    Seven died the other day. She followed our neighbour’s car onto the road and was hit by a car coming the other way. A stupid accident, a stupid mistake. Unlike Susie, this one wasn’t preventable, as Seven was an escape artist extraordinaire.

    But this post isn’t about Seven. Not today.

    Since Susie died, I’ve been spending a lot of time trawling the dogs home website, constantly looking at the dogs needing a home and wishing that Nathan agreed with me. All those sad faces, needing homes, dammit, I’ve got a good home and I want a new dog. I miss Susie a lot actually, and now Seven too, as much as I try not to think about it.

    Eventually, I put my foot down and made Nathan take me and the kids to the dogs home – knowing that most of the time, the dogs are adopted before they get put on the website.

    Of course, I fell in love with the 6 week old puppies because they’re just! so! cute! but they were all spoken for (fantastic).

    We walked around all the kennels, my heart breaking for the dogs who didn’t have owners.

    ‘Look at that one. Pity we didn’t have more land, he needs a job to do,’ I said to Nathan as a 4 month old Kelpie x Blue heeler ran around his kennel, chasing his tail and bouncing excitedly at the sight of new people.

    ‘Oh! Look at her ears!’

    ‘Poor girl, you’re 9 and in the dogs home? Where did your previous owner go?’

    And then, we found her.

    Amy looked at her, nodded her head and said ‘This is our dog. We will take her home.’

    She wiggled in the bottom of her kennel, every inch of her body pressed up against the wire, straining to be patted. She didn’t jump, or bark or whine, she just leaned into the wire and looked at us with giant pleading eyes.

    ‘She’s beautiful’ said Nathan. I agreed readily. A startling white patch over most of her face left me with the impression that one of her eyes should have been blue, not brown.

    ‘How old is she?’

    I read her card. Six months, or thereabouts.

    ‘Still young enough to learn lots.’

    ‘Yep.’

    ‘How long has she been here for?’

    ‘Ummmmm, since the 30th June it says.’

    ‘Ah right, she’s only new then.’

    ‘Yeah.’

    While we talked, we were busy pressing our fingers through the wire, stroking her head and ears. She pressed closer to us.

    ‘You like her?’

    ‘Yes.’

    We wandered back to the front of the dogs home, looking at the puppies again.

    ‘Your decision’ says Nat.

    ‘Okay. We’ll ask about the pups first, because it’s very likely they’ve all got homes.’

    5 minutes later, yes, the pups all had homes. So we asked about the lovely natured Border Collie, whom we both adored.

    Now, before I say anything more, a 6 week old puppy is always going to be my preference, simply because they’ve not had time to learn any bad habits – it’s just how I think. But the look in the collie’s eyes, I was pretty sure she was our dog.

    No. No prospective adopters for her yet, no holds, nothing.

    So we started the ball rolling.

    Almost 2 weeks later, a yard check (I emailed through photos), a conversation with the lovely girl on the phone and a deposit paid, she came down with a stomach virus and the desexing that was meant to happen didn’t.

    So we waited a little longer, for her to get better, for us to get more ready. Of course, Isaac then broke his arm and if things are going to hell, you DEFINITELY need a puppy around the place to take your mind off things.

    But, when we brought her home, she was just perfect.

    And this time, this dog, she’s going to be a mostly inside dog. I’ve lost enough dogs to this highway – I can do without losing anymore, thankyouverymuch.

    Ah Seven, we’ll miss you. We were meant to be bringing you home a friend, not losing you beforehand.

    This is the new pup. Amy has named her Maisy, after some backwards and forwardsing, but it seems to suit her. She is a dream with the children at this point, not jumping, or bowling them over. Isaac is still unimpressed every time she swipes him with her tongue, but he’ll cope.

    The best bit? She seems so freaking grateful to be here with us and not at the dogs home anymore. Rescue dogs are amazing.