Ehlers Danlos Syndrome

It was probably a good thing I had decided to take most of winter and early spring off, because the ‘flu that hit us nearly three weeks ago almost killed me and I was incredibly grateful to not be juggling markets, or cancelling engagements while dying in bed.

The downside of this is the slight twitchiness I get when I look at my (mostly) empty calendar for October, and start wondering how to motivate myself without deadline-panic looming.

Amy was sick for nearly two weeks straight, and as week three ends, she’s still very low energy. Isaac is still coughing up a storm while swearing black and blue that HE’S NOT SICK and I AM FINE, which is nice, but school goes back on Monday and I really don’t want to have them send him home because he’s full of HACKING DEATH COUGH.

Evelyn, surprisingly enough, didn’t get too unwell. It’s shocking and amazing and I am so so so grateful for the fact she merely ran a vague fever for 14 days straight and grizzled a lot, but kept eating and demanding TV programs and didn’t even need a little bit of extra medical care. SO GRATEFUL for no hospital admissions.

It’s no secret that I am disabled. It’s also no secret that I don’t talk about it much anymore, or that you can only see it if you know me well enough to get to see inside my clothing for the braces and the painkillers, and the very careful system I have in place allowing me to (mostly) run my business without too much drama.

This doesn’t stop the government demanding I provide them with all of my medical records within 14 days to prove that my genetic degenerative incurable condition hasn’t magically become curable, fixable, and not coded into my DNA. But hey, who the fuck am I to disagree with them? I’ll just go take up buckets of time at the doctors office while I explain to a locum – because my doctor for the last 27 years has just JUST retired – all of my issues and ask him very nicely to write me a report.

And it’s not so bad for me – I have access to my medical records, and a doctor who can see me within a week of asking. I have a nasty diagnosis which precludes me working, if working doesn’t involve a nap each afternoon, a carer to relocate joints and help me out of chairs, someone to lift everything heavy for me ever, and the ability to lay down with my feet in the air the moment my blood pressure goes screwy and I throw up. Luckily working for myself allows these things, even if I am a bit twitchy about a lack of markets and the need to Make All Of The Things coupled with No Energy To Make Anything.

Of course, everyone knows the best way for the government to fix a fiscal problem is to skim from the bottom of the pile. (Hahahaha, guys. GUYS. You think I wouldn’t work a real job with benefits and regular money if I fucking could? I WOULD. SO FAST.)

So that’s where we’re at. It’s a bit insanity-making to be honest. I had a full medical review done in July ’15, so to have to provide all new paperwork over again is a bit rich, and frankly it’s a waste of both spoons and medicare, but apparently disabled voices don’t count when we point this stuff out.

Hashtag stressed.

On the flip side, soapmaking is going well, if we don’t count the death flu induced recovery period. Soapmaking is kind of the perfect job for me – slow, steady, and doesn’t require too much standing (honestly, it’s basically all paperwork anyway).

Patchouli Musk

In any case, I have another month before the serious summer markets start again and I use every single spoon ever to get through the crazy three months, before I go mad with inactivity over winter again. Tassie markets are slightly unbalanced that way.

Feast or famine, baby.

But that’s me. How are you, Internet?

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Blue ombre style soap. Mint and rosemary scented.

I’ve been developing an ombre technique for colouring soap, which you would have seen if you’re on Facebook, or Periscope. This is the blue soap, which was test #2, and I’m incredibly happy with it.

You can see me make the gold ombre soap (pictured at the bottom) here on Katch, if you like. These will be available online in another month or so, maybe longer if I get around to making a purple soap in the same style today. I want to launch them together, so we’ll just see how we go.

It’s Monday, which technically means it’s my day off, but in reality, I’m spending time checking all of my social media accounts, trying to force myself to eat something, and checking stock levels in preparation for the final two Mona Markets.

We’ve just finished week 8 of a 10 week market season with MoMa and I am tired, so very very tired. I’ve had other markets during that time too, so I’m on about my 14th market in 9 weeks. I wasn’t planning on writing here to complain, but my knees hurt, my stomach is trying to kill me (possibly I’ve developed a lactose intolerance, but I’m not certain, so off to the doctor I go), and I am pretty sure that once March is over my joints are going to stage an intervention and go on strike. Which might work for a week, but then we’re back at it again.

But MoMa, oh, it’s been fun, and interesting, and I’m hoping that the people who have bought my soap seek me out once the market season there finishes and continue to buy from me. I mean, it’s really nice soap, and we all need the little luxuries in life.

It’s a juggling act sometimes, with poor health and crappy joints. I’m napping a lot, and working odd hours, and spending all week prepping for a market and trying to make sure I eat enough, and sleep enough, and physio enough, and brace enough, that I can do a market on the weekend without falling apart. I suspect I’m running on adrenaline and painkillers, but there you go.

When disability runs smack bang into my need to be doing something, it means I get to work markets, but I never leave the house for anything else.

(Actually, I went out to welcome a friend to Tasmania the other night and realised that I hadn’t actually left the house for anything except markets and doctor’s appointments since January, so there you go.)

Thank god for good braces, tight jeans/leggings (they keep my hips in place), and the support of Frogpondsrock with driving/setting up/packing down, and Nat of course, who keeps the household running smoothly while I’m practically useless for anything involving errands or housework.

I wouldn’t change the work for the world of course – it’s gratifying to sell a product I’ve made with my own two hands and to know it makes people happy to use. Small happinesses are important.

In any case, this is pretty much just me checking in. I’m not dead. The change of season is making my mental health struggle a little, but I’m used to that. I’ll double my vitamin D and see how that goes. I’ll keep running on adrenaline and smiling lots, which isn’t hard, because I do genuinely enjoy talking to people at markets.

And hopefully my left knee stays together for a little while longer, because frankly, I rather rely on it.

Gold ombre style soap. Lemon Myrtle scented

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Tuesday night I got up on stage and talked about my experiences of PND following Evelyn’s birth.

The days leading up to the talk were filled with hyperbole, used as a coping tool to cover my nervousness. “I MIGHT DIE” is an adequate description of how I felt, right up until I stepped onto stage and everything was okay again, despite the bright lights and the audience staring at me.

Things are bothering me at the moment – a combination of busyness and Ehlers Danlos Syndrome, the discussion of disability, my inability to do things I want to do in favour of having to take care of my health so I can continue to operate a small business, but in the wake of Tuesday’s talk and remembering just how rotten my PND was at the time, everything feels like sunshine and smooth sailing.

However, disability is a tricky thing to manage when there’s little consistency to my particular brand of bendy/broken. Good pain control helps immeasurably, but there’s exhaustion and joints which refuse to stay in place on a regular basis.

And I do identify as a disabled woman, despite my ability to hide how broken my collagen is with braces and smiles, good painkillers and carefully managed activity.

Wednesday, the organisers of the Mental As forum called us, the speakers, to make sure we were all okay. And I am okay. I was on my way to bump into the Pop Up Shop, where my soap will be available for sale for two weeks, so I was stressed, of course, but I’d moved on to the next big thing. Speaking on stage didn’t kill me, I didn’t pass out or throw up, so it’s all good.

I’m alternating times in The Pop Up Shop with Mum (Kim Foale Ceramics) – who will likely do the bulk of the sitting, while I spin in circles at home, trying to manage the Christmas rush (which is a lot of fun), with stock levels and wholesale orders (also fun, and I love doing them).

It’s the last few days of school holidays, which is a beautiful beautiful thing. I’m going to be sitting in the shop during Salamanca Market on Saturday, which is also a beautiful thing.

Having my own business is the only way I could work. Being able to structure my work days around naps, paperwork while laying on the couch, and small children, is a good thing. I have to keep reminding myself that it’s all a juggling act. That I can’t actually do more than I am without paying the price down the track.

Right now that price is some tiredness and a bit of breakthrough pain, plus a lot of nausea.

Down the track that price tends to be catastrophic body shutdowns as I lay in bed and shake and tremble and try not to throw up.

I’m juggling, structuring my days nicely, and taking time out to lay down with cups of tea and my book.

So far, it’s working okay.

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My mother hates this photo, so now I'm taunting her with it.

My mother hates this photo of me (although she agrees Evelyn is adorable), so now I’m taunting her with it.

I took two of my slow release painkillers this morning, instead of staggering them morning and late afternoon. Normally I skip my late afternoon dose because they make it hard to sleep, but oh, the pain today, and the exhaustion. My ribs are sliding around under my skin like they’ve forgotten what they’re meant to be doing, and my knees ache and the bones slip slide slither around, not quite dislocating, but not feeling right either.

So I took two painkillers at once, hoping it would help – praying it would give me enough pain free time I could be motivated to do something, anything.

All of this would have been fine of course, but I’ve had some weird vague nausea, so maybe I didn’t eat as much as I should have today, which is probably why I felt my painkillers hit about 30 minutes after I finished eating dinner, approximately 10 hours after they were meant to start working.

This is why I’ve just finished hanging extra cold-defying blankets over all the windows (it’s meant to freeze overnight) and making a chocolate ripple cake with nutella cream, and maybe I’m about to go and cut the soap I made today. I’m maybe a little bit manic. However I am still in pain, so I’m not really sure what has been achieved.

Speaking of soap: the recipe today, ooooooh boy. I don’t quite remember it being this tricky last time I made it, but there I was, bashing down moulds and trying to poke all the air bubbles out as the soap set in front of my eyes. I tried to smooth it out, but there’s only so many abominations glitter can cover.

Cinnamon Vanilla soap

You can see the rapidly gelling centre (that’s the dark bit) and the weirdly textured top.

Luckily, the recipe is solid – one I’ve used a hundred times before – and the soap smells AMAZING (cinnamon vanilla), so provided it hasn’t separated in the centre, it should be presentable enough once I get it cut.

Soy wax I ordered arrived today. I seem to remember buying it with candles in mind, but I don’t seem to have bought any wicks, so maybe I was thinking of soap? I don’t know. I’m beginning to suspect our family’s tendency towards ADD did not actually skip me.

Anyway. Soy wax is beautiful because it’s actually 87% stearic acid, which means DUN DUN DAAAA, I can experiment with some beautiful high stearic shaving soaps, and maybe a cream soap or two. I steered well clear of pure stearic acid because it is, of course, derived from palm oil and I can’t very well be a palm oil free business if I sneak it in labelled differently.

Three new fragrance oils also showed up with the wax – again, I forgot the fragrance I intended to buy (French Pear – almost entirely sold out in three markets) and ended up with Grapefruit Lime (also sold out within a few markets, although I have some of the previous batch packaged in plastic still which is available online), Lavender Cucumber, which I must admit is my absolute favourite, and I can’t wait to make a few batches and debut it at markets, because the name sounds off putting, but it has to be the best scent. Sweet and slightly spicy, with cucumber notes and I don’t know, it’s just beautiful.

I also ordered 500ml of Cucumber Water, which is also divine, although strangely it arrived in 5 x 100ml bottles instead of one large one, which I’m sure cuts someone’s profit margins down somewhere along the line.

There’s a week until the anniversary of Nan’s death and I am alternately perfectly okay, and perfectly not okay, in equal measure. The weather is cold, our wood is running low (regular wood supplier has rather inconveniently taken himself off for a holiday in NSW, not that I can blame him) and I still don’t know if my attempts to repair the cracked fireplace has worked or not, as we can’t light the fire for another 24 hours. So, there’s that.

Death makes me scatty. Sadness makes me scatty. Painkillers which don’t kick in for too many hours make me scatty.

In any case, I made some soap, cooked a curry, and have managed to keep all my children fed, warm, clothed (sort of, Evelyn is a nudist in the making) and mostly entertained.

I’m going to call that a win for the next week.

Come on Spring.

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It’s what I hear, over and over. “Don’t let your disability define who you are! You’re not your disability!”

See, the thing is, it does define who I am. By its very nature, disability defines who you are as a person. I am not separate from my disability. The part of me which relocates joints, and vomits at 2am, and takes the highly addictive pain medication I need to function – I can’t just cut that bit of myself out and throw it away.

I am disabled.

Ehlers Danlos Syndrome is a sneaky disorder in that it often presents as an invisible disability. I am not (yet) in a wheelchair. I am not visibly sick. I don’t have a mark on my forehead you can see, nor do I wear tshirts which say “I AM DISABLED AND IN PAIN PLEASE DON’T BE A DICK” although maybe I should.

Yesterday I did something to my wrist. The pain shot from the tips of my fingers to my elbow. Crippling debilitating pain. I couldn’t move my arm, or type, or use a mouse – let alone make soap or body products, that handy thing which actually allows me to pay my bills lately. I was incapacitated.

And let me tell you, it hurt, and I wandered around the house looking piteous and waiting for my pain meds to kick in.

Eventually something went CLICK in my shoulder and like magic, the pain eased, leaving behind only an ache in the bone. I had wondered if I’d pinched a nerve when my shoulder slid around, and there it was, the proof was in the relocation.

Which all goes to say: Mostly I look fine, but if I do not let my disability define what I can and can’t do, then I get sick. Sicker. I push too hard, to fast, and wind up in bed for a week. I get seriously unwell, and I can’t regulate my own body temperature or blood pressure. I can’t keep food down, or stand up without being dizzy. And when these things happen, my ability to use my muscles to keep my joints in position becomes severely hampered and I end up a little puddle of bones and goo and pain, none of which goes together in the correct order.

So it’s important to me, to let my disability define me.

I’ve been pushing too hard lately, and everything fell down around my ears early last week when my blood pressure refused to rise and I spent two days on my back with my legs in the air eating salty chips. Not unlike my attempts to get pregnant, it was frustrating and awkward at times, and eventually it passed.

It passed because I listened to my body, mainlined salt and electrolytes like they were going out of fashion, and let myself heal.

Well, sort of. I still had to do two markets in amongst this and all I can say is thank god for adrenaline.

The social model of disability suggests it is not my body which is the problem, but society’s refusal to accept disability and make allowances for it. This is why I work for myself, not in a full time job. It’s why I structure my life the way I do, and it’s why I still have to field statements like “don’t let it define you!” and “you are not your disability.”

Well meaning statements, true, but idiotic all the same.

My disability is not something I can just turn on and off. As much as I would like to leave my house more often, I don’t. A wheelchair is in my future, somewhere. These things are part of who I am and how I identify with the world.

I can’t just remove them from my psyche.

Trust me.

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