Sleepless Nights

Tag: I am so very tired. Fetch me a feather bed.

  • Ehlers Danlos, the baby that won’t swallow and a series of tests. Plus severe anaemia.

    We saw Evelyn’s paediatrician yesterday.

    Digression: How many of my blog posts in the last twelve months have begun like that, I wonder? It seems like it’s all I ever begin with. We saw “insert medical professional here” yesterday and BLAH BLAH your baby is WEIRD. Is it just me? Am I the only one boring myself to tears?

    Sorry. Back on track.

    We saw Evelyn’s paediatrician yesterday, who immediately let us know that Evelyn’s last lot of bloods showed her to be severely anaemic. Her haemocrit levels were a 3, when they should be at a minimum of 30, and her ferritin levels were a 2, when they should be 100.

    Iron supplements have been started and thank all that is holy (seriously, rub your Buddha, praise your God, pet your kitten, whatever floats your boat) she is managing to swallow her meds. Sure, it takes me more than five minutes to give 3ml of iron, a drop at a time, but it’s going in and it isn’t being spat or choked on. WINNING.

    Of course, her serious anaemia leads into some serious concerns about the fact that the baby isn’t eating anything except breastmilk and the occasional accidental pea.) Thus far, I’m managing to meet her calorie needs, as exhibited by her lovely chubby cheeks and no weight loss, but I’m not managing to meet her nutritional needs any more – not without some form of supplementation happening. And yes, before you ask, I’ve added an iron supplement to my diet as well, just so that we can cover all bases. Because, EXHAUSTION.

    Evie has been referred through to the Hospital Dietician, she is being booked in for a Barium Swallow to check for structural issues, and we’ll start the baby steps to get her coordinating her swallow effectively and hopefully transitioning back to solid food again.

    “You need to realise though, this process is going to take months, at least. It won’t happen overnight.” says our Paed, as I rock and laugh maniacally in the corner. How do you supplement a baby who won’t take a bottle or cup? HAHAHAHAAA.

    They can work that one out for me.

    In any case, Evelyn is under the care of a fantastic team, both at St Giles and The Royal Hobart Hospital. I cannot speak highly enough of their care and commitment to Evelyn’s health.

    She’s also been referred through to our geneticist, so that he can look at the probability of Ehlers Danlos (dislocating joints AHOY), or whether there is more testing that needs doing, to look for other conditions as well.

    In the meantime, we have a sleep deprived EEG booked for next week. I have to wake Evelyn up at 4am to make sure that she is nice and exhausted and angry and OPINIONATED for the EEG sensors, before hopefully falling asleep and exhibiting her constant sleep-twitching. I’m not looking forward to that one. Actually, I’m not looking forward to anything much at all. The thought of trying to get Evie to do anything she doesn’t want to do fills me with a special kind of dread.

    Upside: It’s her birthday on Sunday. I have successfully kept this complicated baby alive for almost an entire year now. CELEBRATIONS. CHOCOLATE. CAKE.

    I think I’m winning.

  • Painkillers, headspace, broken joints and assorted other things that won’t make sense

    It was after I dropped Amy off at school that my hands started to hurt, badly. We were on the way to the supermarket and I’d already had to talk myself out of vomiting a few times this morning, so my head really wasn’t up to ignoring the pain in my hands.

    By the time I was 3/4 of the way through the supermarketing, I was unable to push the trolley and the pain was at the front and centre of most of my thoughts. Luckily, with the help of unlimited lollipops, Isaac was being practically angelic and just following along behind us, as Nathan pushed the trolley and lifted the heavy things, like milk and rice.

    (Side note: It takes three lollipops to get the supermarketing done without meltdowns or screaming. What I need now, is to find lollipops without artificial colours.)

    I held on, until I got to the chemist, knowing that I had scripts for regular tramadol (that doesn’t give me insomnia) and panadol oesto for the arthritis pain. Only, when I went to fill the script, I discovered that it was out of date and I was out of luck. Fun times, you guys, fun times.

    By the time we made it home, I wasn’t in the best frame of mind and Isaac deciding to have a meltdown over toothpaste wasn’t really something I wanted to deal with.

    I managed to take some slow release tramadol (that does give me insomnia) and now, two hours later, it has kicked in and while I’m still in pain, I’m rather stoned and I don’t care quite so much. It was a choice between stoned, or knocked out. Sometimes there are no good choices.

    This Winter has been really bad. I’m coming out of the other side of SAD, smack into depression and anxiety, but I think that if I can hold on until the weather warms up, I might be okay. My soul is screaming for long hot days spent laying in the sun, letting the warmth fix my joints for a little while.

    ***

    I was outside using the pitchfork to poke holes in the swampy patch in my back corner. I had a bag full of mint that needed to be planted and Isaac was helping me, by tipping out the roots and running away with them.

    Three holes in, the pitchfork handle snapped in my face, as the bottom (metal) end threw itself up into my forehead.

    “Mummy! It hit you in the head! MUMMY!”

    Funnily enough, I realised that.

    My forehead still hurts, but the cut is healing, at least.

    I can’t say that it’s helping either my mental or physical states to be beating myself up with a pitchfork, however.

    On the upside, with some help from Nathan, I got 20 currant cuttings planted out (not sure what types – Mum had forgotten) and a bag full of mint plants planted. And the raspberry canes survived being transplanted and are shooting up.

    Finally.

    ***

    It’s been dark inside my head lately. I keep putting one foot in front of the other and trusting to the fact that eventually, this will change. It might not get better, or easier, but I can count on it getting different at some point.

    Different is good.

    I’m discontent with my house, with my lack of garden, with a paddock full of nothing, that screams its nothingness at me every time I see it. With the clutter and the lack and the excess and everything. I am discontent.

    I need to work on getting things inside my head sorted, so that I can work on getting things outside of my head sorted.

    And until then, I’m going to keep dreaming of moving house and living somewhere that isn’t falling down, that has a garden to sit in and just be, and storage space and cupboards for everything. I hear that they exist, somewhere.

    Until then, I’m going to keep planting things and hoping that they grow and help sort my sanity out.

    ***

    I don’t think this post makes much sense. Sorry about that.

     

  • So far from okay

    My last few years have been … eventful. Starting with a pregnancy that didn’t look like it was going to end well, cancer, death, family fuckwits, autism x 2, early intervention, Ehlers Danlos, a falling down house, debt and depression. It hasn’t exactly been the time frame that I would hold up to the light and dissect, more the time frame that you force to the bottom of your closet, stomping on it as you go, so that you don’t have to deal with it anymore.

    I signed up to participate in RUOK Day and then promptly decided that I would be better off stabbing myself in the eyes.

    I am not okay. I am so far from okay, that okay is the distant shore that I left some years ago, before doctors told me that things were “all in my head” and tossed around words like anorexia and problems at home to explain why I was sick and exhausted, why I threw up every day and why my joints hurt so badly.

    You tell me, how are you meant to trust the medical professionals to help out with mental issues, when mental issues are what they thought your major, genetic, connective tissue disorder was? I don’t trust them to help anymore.

    I watched my grandmother die. I dealt with the fallout that rewriting a eulogy caused. I read long winded rants about myself on the Internet, written by a family member. I dealt with the trolls. I helped clean out her house, knowing that it was never going to be okay that she was dead and we were parcelling up her belongings.

    I went to a doctor to discuss anxiety medication, only to be told that it would be better to sort out WHY I was anxious, rather than just medicating. You can’t cure grief by wanting it to hurt less, any more than you can make a broken bone heal faster than it does. I left with medication, that didn’t work anyway.

    My son was diagnosed with autism and while it wasn’t the worst thing to happen, it was the straw that broke the camels back. Really universe? Autism and Aspergers ON TOP OF EVERYTHING ELSE? REALLY?

    Fuck you.

    I would like to be okay, in the same way that I would like my joints to stop dislocating and to stop vomiting all of the time. To stop having to deal with meltdowns and the assumption that I am okay, because I tell everyone I am. I would like people to notice, without having to be told, just how far from okay this whole mess is and to stop assuming that they know how they would handle it.

    I would LIKE for the Pain Olympics on the Internet to stop and for people to stop negating what I am dealing with, because it could be so much worse. Sure it could be worse, but stop trying to fucking jinx me. Last time I thought that nothing else could go wrong, everything else went wrong.

    And you know what? I DON’T want to talk about this. I don’t want to cry anymore, or have to talk about this, or try to explain. Writing it is hard enough. The last psych I talked to about my anxiety and grief, seemed to think that it was nothing to worry about. Obviously I downplay things, really well.

    RUOK?

    No. No I am not.

    Now excuse me, while I get off the Internet, before I am tempted to swear anymore.

  • I am so not fashionable

    I am so bendy, we don’t go out often. I prefer to conserve my energy doing things like reading novels, occasional baking, child snuggling and writing. This is much easier to do when I haven’t used all of my energy traipsing around a supermarket, or glaring at old ladies who don’t understand why Isaac is speaking at volume 11 and spinning in circles.

    Because I don’t often go out, it wasn’t until recently that I bought any nice clothes. The AusBlogCon cemented my need for something that wasn’t jeans and a t-shirt and so I bought some bits and pieces.

    So now I’ve got skirts and heels and shirts and scarves, but who can pull off that kind of attire, when the most exciting thing planned for the day is walking through a paddock looking for eggs?

    Even worse, when the paddock is muddy, I usually have “outside pants” and “inside pants” and my outside pants get worn, muddied up, taken off, hung in front of the fire and ignored. Do I actually need to be wearing pants if all I’m doing is blogging?

    My paddock bashing gear is all stuff I’ve had for years. I’m loathe to wear good clothes if they’re going to get dragged through the mud, snotted on, flown into, or muddied up by dogs. Although, I am getting much quicker at dodging the incoming flying ducks and they’re getting better at not landing on me, or in the feed bucket I’m carrying. For the record, ducks are heavy and flappy.

    So really, I spend a lot of time in jeans that are a size too big, daggy t-shirts and windcheaters. All of this, I am certain, make me look uber sexy.

    Fashion blogging seems to be the “in” thing at the moment, but I’m not sure I want to inflict myself on the Internet, wearing my everyday clothes. It’s bad enough that I wear a lot of it to school drop offs.

    I can say this though – I have not ever gone to the supermarket, or school, in my pajamas. Ever.

    Is it terrible of me to admit that the most fashionable thing I own and wear on a regular basis, are my new red gumboots? They’re only mine because they wouldn’t fit Mum, and they’re two sizes too big, but they’re shiny (still) and waterproof.

    For someone who used to overly concerned with how everyone else was dressing and keeping up with the latest looks (even if those looks were, in hindsight, crap), I have certainly fallen a very long way. Heh.

  • Frankly, I’m just really tired.

    I’m sure there are reasons why some planes leave some states at godawful o’clock. I’m sure these reasons are perfectly logical.

    What I am utterly failing to understand right now however, is why I personally decided to catch a plane at godawful o’clock today.

    I vaguely remember a 3am start and a drive to the airport and my eyes trying to close during landing in Melbourne because I was just that exhausted, but everything is a bit of a blur.

    I remember the bloggers brunch, a room full of women, equally loud and nervous in turn. Not enough space (is there ever enough space at events like that?) and a LOT of talking.

    I remember a late lunch with blogging friends and lots of laughter and lots of walking.

    The actual details are a little blurry though.

    Really Internet, this is just me letting you know that I am utterly exhausted, and nothing has gone wrong yet.

    Hell, I am even too tired to be stressing about the conference tomorrow.

    That has to be a good thing, right?