Blog
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“Do not let your disability define you”
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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To all the parents still stuck in a haze of sleepless nights…
IT GETS BETTER.
My URL when I first began this blog was a hope, a prayer, a wish. It was me promising myself that it would get better. That things would get easier. One day I wouldn’t be so tired I wanted to cry.
Some day we WILL sleep.
SOME DAY.
This blog has been alive for almost 8 years and it’s finally here.
My youngest is three in July and mostly sleeps through the night now.
So to all the parents who are sleep deprived, hidden under a pile of nappies, trying to claw out five minutes peace. This is for you.
IT GETS BETTER.
Isaac (6) just made breakfast for everyone. Toasted sandwiches. My two older children make their own breakfast regularly, and take care of the 2yo when I am flat out exhausted.
I’ve been sick (‘flu) and aside from Evelyn throwing a tantrum at me (“MUMMY! PUT YOUR PANTS ON. YOU NOT NAPPING! PUT PANTS ON!”), I was able to spend the worst of my illness in bed.
IN BED.
I was sick and I went to bed. Everyone survived. Amy (8) even came and led Evelyn (2) away saying “Eve, Mummy is sick, leave her alone and I’ll play with you.”
BLISS.
Of course, they all decided that watching Netflix in bed with me was the best option, but who cares? We were all lying down.
So to everyone still mired in the chaos of very little children, this is my promise: It gets better. Eventually they start school and learn to read.
They can make their own food, wipe their own bottoms, turn on the shower for themselves. They can make lunch, and lunch for you as well.
They say things like “I am making hot chocolate, who wants one?” and you can say “ME!” and they’ll make it and deliver it to your desk.
REALLY. REALLY REAL.
Sure, my youngest is still in nappies and occasionally wakes overnight and spends a few hours trying to sit on my head while I ignore her, but it gets better.
There is light at the end of my tunnel and I just needed to share it with you.
Because honestly, there’s nothing nicer than a six year old presenting you with a ham and cheese toastie he made by himself, or an eight year old making a cup of tea and delivering it to you.
It gets better.
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Time continues to move forward, pushing us along with it
Two weeks ago I changed the name on my Sleepless Nights facebook page. Today I requested it be merged into my Veronica Foale Essentials page.
It was time. I knew it was time and yet, I’m still a little sad about it.
As business decisions go, it’s a smart move. Merge my social media profiles, streamline any time spent updating pages, consolidate my fan base.
As someone who has spent nearly eight years writing here, it was a big move. It’s sad to make the change from Sleepless Nights branding to Veronica Foale Essential branding. It’s a new chapter, sure, but a new chapter means the old one finishes.
Which leaves this space.
Honestly, I’m not ready to give it up. Not yet, I don’t think.
Sure, it’s going to be all soap from now until forever (probably) but there you go. It is what it is. My children are growing up – even if one of them is curled up in bed next to me right now after a Nap Of Doom, stroking my arm and demanding I make her milk “hotter, I needa it HOTTER!”
Life moves on, we grow up, grow older, change. Things change.
It’s not a bad thing.
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Sales, business, and writing.
We didn’t have a market this weekend, and my long suffering joints breathed a sigh of relief. I took less painkillers and I let the exhaustion creep in, just a little bit. We’ve been working hard, all of us, and it was time for a break. The nature of my particular disability means I can only push it so far before it begins to push back, and while I am more determined than smart sometimes, taking this weekend off was the smart thing to do.
I celebrated of course by making lots of soap, catching up on the work I’d been otherwise unable to do, due to markets, travelling, family time constraints. All of these things, and a few others.
My hands rebelled by cramping abominably as I tried to glop a perilously close to seizing soap into moulds on Friday night, and I was forced to switch to my left hand while my right hand contorted itself into some kind of claw outside of my control, while I swore and smoothed and tried to stop everything going to hell in a hand basket. The soap survived, but I walked away with a new appreciation for what my right hand can actually do in a pinch, and intricate layered soap with lots of parts needing stirring, scooping and smoothing may be getting beyond me.
But I don’t stop trying of course, chasing that holy grail with lots of colours and intricate swirls, even when I am left nursing my hand into submission with hot water and heat packs, painkillers and warmth in equal measure.
I try to tell myself it’s pain with a purpose, that lots of people suffer for their art, but I’m left unsure whether it’s worth it.
In an attempt to celebrate a long weekend, I threw a sale over on the online shop, but I suspect everyone is feeling just as poor as we are, with the back to school levies following so closely on top of everything else. Still, we try, because we have no markets and an influx of bills has sent me scurrying to my calculator to set ourselves a Very Strict Budget.
One of my children asks me if we are rich now, because we have a business, and I laugh and laugh and laugh. If people knew the truth of it; how much time and money a fledgling business takes, they would never ever ask for anything. But there you go. And yet I still cannot stop myself lusting over new colours, or a bottle of essential oil, because Business Expenses are Important.
In any case, there’s a rather big sale happening, so if you wanted some soap for $5, and some even cheaper, you should go look, right after you finish here. I’ve promised on our Facebook page to throw in samples for everyone (the sample cupboard is looking a little bloated right now, please help me thin it down), so it’s a good way to get free random soap.
We went out to Belgrove Distillery the other day, in a quest to find some very good whisky, to put into soap. Everyone remains a little baffled by my insistence on soaping with the Very Good Whisky, but if I wouldn’t drink the cheap stuff, why would I want to wash with it? So we bought some Very Good Whisky (see above, re: business expenses) and I boiled it down and added it to soap.
I can’t begin to describe how lush the lather is on the soap bits I tested, but it’s going to be gorgeous. Set to be sold at the Mud and Ink exhibition closing (whisky themed for World Whisky Appreciation Day, of course) by Jon Kudelka and Kim Foale, it should be a bit of fun.
I’ve been invited, and was delighted to accept a proposal by Kenna at Modern Soapmaking to be their newest contributor. Kenna is set to take her family across the USA in an old converted bus and couldn’t dedicate the time to Modern Soapmaking she would normally, so I’m filling the gap and smashing together two passions of mine all at once. Writing AND soap making? What could be better? I’m not really sure. Maybe free chocolate AND writing about soapmaking, but that’s another story.
You can read my first article here, but not before you go and buy soap here, okay? I need to pay my power bill, and the postage costs for the month, and somehow, the German Shepherd pup (very cute, very naughty, very intelligent) eats more than my three children put together. Puppies should come with warnings: WILL GROW TO EAT EVERYTHING.
Eh. I knew what I was in for.
In summary, life is good, if busy and somewhat painful. I’m learning to manage the things I want to do against the things I am physically capable of – a balancing act every day.
Soap making remains an absolutely delightful way to spend my time – I mean, come on, have you seen my soaps? Have you smelled them? (You should, they’re great)
Business is good, if suffering slightly from the same ennui we’re all stricken with at this time of year. Growth is happening, and everything is a lot of fun.
How are you, Internet? Good I hope?