Mother’s Day Grief and Disability

by Veronica on May 10, 2015

in Grief, Life, Soapmaking

When I was ten years old, my mother had reconstructive knee surgery. I spent the next few weeks helping my father keep my little brother entertained, playing cards with my bed ridden mother, and helping my father with things around the house.

Mother’s Day that year, my mother and my grandmother got together and took me out for lunch, the three of us together.

I can still remember how special I felt, sitting there in the middle of the dining room with my two favourite women.

Then there was dessert. I watched, eyes wide, as another table ordered the blueberry dessert. One scoop of ice cream in the bottom of a parfait glass, covered in a mass of blueberries, and topped with whipped cream.

I wanted it. I wanted it so badly. Blueberries were a rare occurrence in my childhood. Overly expensive for a tiny amount, I rarely got them. I can remember how large the parfait glass looked when they delivered it to the table. A mess of whipped cream and what must of been nearly two handfuls of blueberries in syrup.

I remember that it was almost too much for me, that the three of us shared it in the end. I remember my mother’s face, that she could give me this, that sometimes, blueberries are enough to make up for weeks of her being in bed, going slowly insane with boredom.

Mother’s day is bittersweet for me. People assume because my mother is still alive I carry no grief on a day like today. But my mother and my grandmother together were two halves of a matriarchal whole which brought me up. Today, while my mother is still alive, my grandmother continues to be dead, and I miss her every day. She would have loved my children so, loved her newest grandson, three weeks old and cute as a button. She would have delighted in them.

But she is not here, and so my day is tinged with grief.

So while many mothers across the world are celebrating today, I’d like to take a moment to recognise all the motherless children, and the childless mothers. To everyone who is grieving today, I hope your day is gentle and with moments of peace.

I don’t write much when things are going well. I have limited energy, and I’m expending it all on getting my business off the ground and successful. People underestimate how much work it is, how much time and money gets sunk into a fledgling business.

My creativity has dwindled, caught in the change of seasons and masses of soap to package. My hands and heart are tired and I need to write more, write harder, remind myself that I am doing okay, that things will grow, that one day the business will pay for itself and more. One day I won’t count every penny and add up which bill to pay this week.

Starting a business is a long term plan, not a get rich quick scheme.

Working from home is a beautiful thing, mostly. On one hand, if my EDS is playing up, I can take a nap, work on social media, do label design, research, paperwork. On the other hand, it means I am always working. From the moment I turn on my computer at 7am, to when I switch it off at 11pm, I am constantly tweaking recipes, researching, writing lists, emailing suppliers, marketing.

I don’t stop working, ever.

EDS is an interesting beast, in that I can hold it at bay for a time with good painkillers, diet, vitamins, and adrenaline. But the gates only hold it so long and eventually, if I don’t practise a strict self care regime, I crash and end up spending a fortnight mired in brain fog, with pain the painkillers don’t touch.

So I harvest my energy. I spend a lot of time weighing the pros and cons of each action. Will this market be worth the four days I’ll be unable to function afterwards? Can I attend this birthday party? What about doing that other thing I want to do?

It’s a juggling act, and it never stops. Sometimes too, events show up at the end of a long month and I just have to say no, I cannot do it. I am too sick, too tired, too broken.

I’ve been making a lot of simple soaps lately, because my hands won’t hold the jugs to do multicoloured swirls. I’m taking pleasure in their simplicity and trying not to frustrate myself over my inabilities.

Simplicity is a beautiful thing. Simple soaps, simple plans, simple ideas.

It’s the small things which get you through the day.

I am looking at my curing shelves and I have lots of soap to package, samples to put together, soap to make. I’m behind on restocks, on marketing, on everything.

But that is life, and it will be okay.

 

 

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Winter is coming.

by Veronica on May 4, 2015

in Life

Foggy Paddocks

Goat's Milk and Lavender Soap

Silent Sentries

MY GOD SHE'S GROWN

Someone has been busy

Destruction

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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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Children

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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Rainbow Soap

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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