Sleepless Nights

Author: Veronica

  • Soap, Spring and Sunshine

    A month on Cymbalta (give or take a few days) (take, mostly) and things are slowly evening out. My pain is back under control, I’m no longer feeling quite so scatty and distractable and if my jaw is dislocating a hundred times overnight, well at least it isn’t aching all day as well.

    Spring is sprunging here. My fruit trees are trying desperately to squeeze out some early blossoms and the sight of the swelling buds brings me so much joy. The nights are icy and there is frost on the ground in the morning, but the days are long and sunny and there is a patch of sunlight in my bedroom I can spend hours lying in like a contented cat if I need to.

    It makes the bitterness of death a slightly easier pill to swallow. Nathan’s grandmother died last week and he will miss her. She was lovely and we named Evelyn for her and my grandmothers together, which soothes the ache of missing them a little. Their names will live on, even as they don’t.

    —

    Yesterday was full of sunshine. Nathan spent the day grumbling about the dirt against the side of the house as he pulled weeds and discovered exactly where the wood boring grubs are causing issues. He excavated an old hole into the foundations of the house and we shoved the cats down there to hunt mice and chase each other.

    Evelyn happily followed him around the yard, throwing weeds into the wheelbarrow until she got bored, pulled her gumboots off, sat in a pile of freshly turned dirt and began digging. By the time we were ready to come inside she was covered in mud, but it was okay, because she had successfully completed her quest to fill her boots up to the very top with dirt. I admire her ability to stick to a task as the cats ran over her, the dog nearly sat on her and the dirt she was sitting on got progressively damper.

    A long warm bath and she was clean again, with a bonus lot of fingernail cutting thrown in.

    Winter hasn’t been cold exactly, but it’s been dull and weird, probably contributing to my dull and weird mood. More vitamin D is in the works, along with an iron supplement, because I always seem to forget I need to supplement with iron when I get too exhausted to eat well.

    —

    The soap business launches in a little over three weeks and I am so excited. My shelves are full of soap ready to sell, and my other shelves (and the other shelves, and basically the entire house) is covered in soap still curing, packaging, label tests and various lists of things I need to do.

    It’s excellent and exciting and I am so grateful to you, my dearest Internets, for supporting me and making the process of setting up a business so much fun.

    2014-07-31 20.49.36 020

  • There’s always an upside.

    I started Cymbalta twelve days ago. I think. Let me count. Yes, twelve days ago. Which of course means my brain has gone on holiday. I think I spent 2 hours yesterday sitting in front of the fire doing nothing. My brain just turned off and there I was, staring at the flames and nothing was working. I find myself gazing into space, thinking about nothing.

    Everything is an effort. Like moving through treacle. But if I take them right before bed, I can’t sleep. WOE IS ME.

    I need something to pull me out of this god forsaken grey fogginess, but I suspect the only thing which will work is time.

    On the upside, my pain levels are a lot lower and I know from last time I should start to feel better in another month. I can do that. I can do this.

    In the meantime, I spend a lot of time contemplating things. Do I need a wheelchair? Would I actually leave my house more often if I didn’t have to walk when we got whereever we were going? How does a husband push a wheelchair and a trolley at the same time? Could we convoy our way through the supermarket?

    No.

    So there’s that.

    Things are happening here – well I mean, things are always happening here. And I think about writing about them, but then it’s like someone is sitting on my shoulder asking why the fuck anyone would care about it. Basically my brain is screwy and I’ve forgotten how to blog well.

    The dog needs an operation. She limps intermittantly and a vet visit today showed her patella is dislocating. Because OF COURSE, right? If anyone gets a dog with a dislocating knee it ought to be me. So she’s off for an operation next week and I am so relieved. I was worried it was something more serious and we were going to have to put her down. Plus, the quoted operation was way less than I was expecting, so that’s nice. I’m not going to have to sell a kidney.

    School continues, as always. Multiple complaints about multiple things there, but this blog is very public and I’m already persona non grata down there I suspect. Maybe I’ll write about it elsewhere and at least get paid to have sour looks thrown my way. How dare I complain.

    Eve is recovering, slowly. She’s asleep at the moment, which is of course why I can write this rambling crappy blog post, because she hasn’t heard my fingers tapping and come running to sit on me and bash the keyboard herself. She’s still coughing, but that’s a hallmark of RSV, a lingering cough.

    We moved her out of her cot (side note: if you’re in Tassie and you know someone who wants a cot, email me. good quality, aus standard approved and taking up too much space in my storage area. free as well.) and into a bed – well, a mattress on the floor because she flails a little too much to be trusted with edges yet. When she’s adjusted to this, we’ll play juggle the bedrooms and she’ll move in with her sister and everything will be chaos for a week. Of course.

    So that’s me. Soap is happening, the business launch is a mere six weeks away and I’ll be glad when my brain is working well enough to actually let me work without losing my train of thought or accidentally falling asleep on my keyboard.

    Yay me, right?

    Again. Upside: less pain.

    There’s always an upside.

  • And now you are TWO!

    My dandelion headed, willful, gorgeous, cheeky, amazing girl is TWO.

    Eve opening presents 002

    Eve opening presents 006

    We’ve come a long way in the last two years and to hear her sitting next to me right now with textas and paper, demanding I draw her flowers is just fantastic.

    She’s still recovering from the RSV and is more fatigued than normal, but she’s getting there.

    Happy Birthday Evelyn! We are so glad we have you.

  • In summary: No one died.

    Internet, I cannot tell you how nice it is to be home. I’ve spent the last three days in hospital with Evelyn after she caught RSV and gastro together, making her horribly unwell.

    Evelyn sick

    Three days of IV fluids and a little oxygen and we were allowed to come home yesterday for a trial to see how she does. I am grateful to say she rocked the trial and we are still home and she’s feeling a little better back in her own routine. Not well enough to run around the house, but well enough to have opinions about putting on pants this morning.

    We were worried and we’re so glad she’s on the mend now. It will take her a while to gain back the strength and weight she lost, but she’s eating a little and toddlers are excellent at bouncing back. Unlike Nathan and I, who are still getting over the effects of the gastro and RSV Evelyn gifted to us.

    On the being home front, there’s nothing like sitting next to a toddler who is too unwell to do anything but sleep, watching her oxygen drop lower and lower to make you appreciate small things like a hot cup of tea and being able to potter around the house without worrying someone is going to cough themselves into unconsciousness.

    Not to mention the bliss of sleeping in my own bed last night after the hospital pull out and previously, a mattress on the floor so I could monitor Eve’s breathing.

    Things have been quiet here while I tease out what I’m doing. Evelyn update above aside, I’m not a Mummyblogger any more. So I don’t know what I am. Tired, mostly.

    The fortnight of serious illness coupling as it did with the school holidays means I am seriously behind on soap work. There is 24kg of soap needing to be stamped and honestly, I’m not sure I’ve caught it in time. It might be too hard to stamp and I’m loathe to ruin any soaps trying. So I may just ignore it and send them out unstamped.

    My routine is thrown out, and I’m struggling a bit, stepping back into the role of maker, writer, business owner, mother, nursemaid. Taking a fortnight was the only choice I had, but it’s hard now, playing catch up. That’s the problem with working for yourself – if you’re too sick to work, the work just waits for you. No one else does it for you.

    It will be okay. I’ve only got eleventy hundred soap buckets to scrape out and wash, and like, five hundred soaps to label and wrap. When I get around to buying the paper for labels. And designing the labels. And printing them.

    Holy mother of god but I need three more of me. And minions. Lots of minions.

     

  • Disability, depression and the invalidation of my lived experience.

    It’s been 18 months since I was diagnosed with postnatal depression, and twelve months since my brain was stable enough to come off my antidepressants and begin coping again. But the process of depression, like a lot of things, is not linear, and I find myself slipping back into old thought patterns quite easily these days.

    Worry over starting a business is part of it, of course – we’ve invested time and money into this venture and as the launch day sneaks closer (September 12!), my stress levels rise.

    But it’s more than that I think – a series of little things really. The anti-disability sentiment hanging around the joint lately doesn’t help. When a good portion of society is screaming that you’re worthless, it’s easy to dwell on all the things you can’t do, rather than the things you can.

    And if I hear one person say “There’s no such thing as can’t” in a smug self-congratulating way, I may just hunt you down and personally stab you with a chopstick repeatedly until you can’t move.

    It’s a lot of things and it’s nothing. Nothing and everything.

    I’ve got an appointment with my doctor next week, ostensibly to fill out the paperwork Centrelink has demanded in giant red letters, asking me to prove my (degenerative, incurable) disability hasn’t magically improved, but I will be discussing the possibility of remedicating at the same time.

    At any point when I stop writing, or leaving the house, it’s usually when I know I need help. So I’m asking for it.

    The process of reassessment for disability support is also a factor here of course. Having to prove, over and over again that you’re telling the truth, that you have a problem, that it’s real, that it causes your life to be impacted in ways they can’t understand – it’s stressful.

    I knew this was coming. I’m under 35 (clearly disability is harder to catch if you’re young) and I’m exactly the person the government is targeting with their current hate campaign, but I thought we’d have a little more time before I had to jump through metaphorical hoops. After all, the budget legislation hasn’t even passed yet.

    But no matter. I can’t change it, I can’t fix it and I can’t magically fix the genetics which made me who I am and therefore start ‘contributing to society’, so I may as well just suck it up.

    It’s still a bitter pill to swallow, to be beholden to a bureaucrat who decides whether you starve or not.

    Someone, quite snarkily, told me I was not my genetic condition and I laughed and laughed and laughed. Because I am. Because this disabling condition is as much a part of me as motherhood, or the love of books and writing, or the fact I have black hair and hazel eyes. It’s part of me, sunk deep, and it impacts every single choice I make every single day. I can’t just take it off and have a break every now and then – it’s ME. It IS who I am, and I find myself resentful that someone would assume I could just delete part of my own story to… I don’t know? Stop talking about it maybe? Stop making them uncomfortable with the fact that disability can strike anyone?

    I don’t know, but I still stew over it occasionally. “You are not your genetic condition” like somehow, my experiences as a disabled woman don’t matter. Like somehow, my disability is “other” to my identity.

    Clearly this is a complex issue for me and I’m still working through it in my own head, but telling me I am not my genetic condition is akin to telling me to just get over it. To just ignore it and be … someone? someone else?

    I don’t know.

    It’s so much more complicated that a simple throwaway line suggesting my disability is not integral to who I am.

    There have been a number of deaths in the Ehlers Danlos community lately. No one I knew, but friends of friends and it’s impossible to not be touched even slightly by the knowledge that EDS kills.

    I am lucky in that my subtype is unlikely to cause aneurysm and death, or organ rupture. Crippling pain and dislocations, sure, but my doctors and I are pretty sure I won’t die of EDS related complications.

    Not everyone is so lucky.

    In the meantime, I will continue to potter around the house, doing the bits I can do and napping when I’m done. I’ll deal with yet another series of complaints when I can’t attend family gatherings because I’m too exhausted. I’ll hug my children, read a book, make some soap.

    And hopefully, the antidepressants will help me get my head in order again soon.