disability pride month

I’m not sorry…

~ somethinginthewayshemoves

I believe the ‘May you live in interesting times’ debate is well and truly settled. These times are no blessing. Life has become that dog in the burning house meme. We’re all expected to carry on, but hey, I don’t think any of us are fine.

Dog in a burning room with a speech bubble saying this is fine

In recent years we’ve had the rise of the right. Politicians who have zero interest in the common good, civic responsibility or even telling the fucking truth. Police are still murdering POC without consequence, whilst they simultaneously neglect to intervene when a maniac massacres small children. The poor get poorer, the rich get richer. Footballers have to intervene to feed hungry children because our leaders have absolutely no interest in people who aren’t just like them. A global pandemic is killing millions and spawned a new kind of selfish. The same people who won’t wear a piece of cloth on their face to protect other will happily force a ten year old child to give birth to a rapist’s child. A new, extra virulent type of anti vaxxer has infected our society. Marginalised groups are more at threat than ever; hate crimes soar. The American right to a gun cannot be challenged, but abortion, gay marriage, trans rights, basic medical care and voting rights are always on the table. The tories lie, cheat and steal right under our noses. They rape and harass to no one’s surprise and the party doesn’t even have the decency to be embarrassed. Parliamentary goal posts are moved at will, Mp’s get a raise and workers whose wages don’t even keep up with inflation are shamed for striking. Covid, corruption, inequality and of course inflation rage. The PM has gold wallpaper and blow jobs in Westminster. The rest of us dread the electric bill and can’t afford butter. While he’s paying his various flings with public money disabled people can’t even co habit without losing meagre government assistance. The earth we stand on is crumbling beneath our feet and I haven’t even scratched the surface. There’s a whole world of cruelty out there, it never ends.

Did you think that paragraph never end? Where you begging for full stop followed by nothing? Join the club. This isn’t burnout. I don’t need a bit self care and neither do you. We need a revolution. Watching the scummiest humans on the planet make everything worse day after day, year after will destroy any decent person.

If you feel like you’re losing it, I think that’s perfectly reasonable. If you’re angry and sad and feel utterly helpless, I’m right there with you. I am sorry that you’re expected to carry on regardless. I’m sorry that you must live in these intolerable times without any grace. I don’t know what will make any of this any easier, but if you do, please give that to yourself. Don’t apologise for what you need or your reaction to our atrocious world. Nothing is ok, we don’t have to waste energy pretending it is.

* Obviously let’s all organise, protest, donate, vote and support each other as much as we are able. Change won’t happen if we don’t force it, but please also take care of yourself.

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Down by the sea…

~ somethinginthewayshemoves

Last week I headed north for a wee break by the sea. Our cottage was perfect. Exposed stone walls, cute nautical touches & the most beautiful view.

View of Cartterline bay & lighthouse from hill top

My nephew was along for the ride, so I needed cute unfussy clothes that allowed for much carry on. I also had to account for the crazy heatwave. First thing in my suitcase was this adorable skort that I’ve just bought. I’m not usually a shorts girl, but I really love the teenie skirt/short combo. It was ideal for early morning shenanigans with the rascal.

Ly is wearing floral mini skirt, shark vest & cardi and is standing above a pebble beaches bay
Skort – Simply Be
Vest – Primark (men’s)
Cardi – Handmade by my Mum
Sandals – Pillow Slides
Glasses – Where Light
Ly is lifting floral skirt to shoe shorts attached beneath

For our trip to Stonehaven I opted for this polka dot dress. It’s super light and easy to wear. Whilst still offering coverage to prevent burning in the sun. The wind was blowing so you can’t see just how cute this dress is. You’ll have to trust me that it has a lovely shape. Oh & pockets!

ly is standing at the seafront on a sunny day wearing green polka dress and using a walking stick
Dress – Gift
Glasses – Where Light

Finally for a blowy day at St Cyrus beach I opted for this trusty jumpsuit. Again, it’s super light and easy to wear. I added the cardi later in the afternoon when the wind got up. When I fancied a paddle I went old school & tucked my jumpsuit in my knickers!

ly is wearing a leopard print jumpsuit & purple cardi. She is standing on a wooden bridge with a walking stick
Jumpsuit – Very

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Be running up that hill…

~ somethinginthewayshemoves

Chronic illness is great at kicking you when you’re down. Lamentably, it also likes to give you a dunt when you’re flying too. It would be taxing to say which is worst, but falling from a height certainly hurts.

That was me last week. I was on a lovely break in the cutest cottage by sea. Soaking up the calming sea side views and thoroughly enjoying time with my nephew. The sun was out, we headed to an incredibly beautiful beach. I watched the boy run around having the time of his life. I paddled in the refreshingly cold sea. Took deep breaths, listened to the lapping waves & felt happy.

Tide coming in on st Cyrus beach

As it edged towards late afternoon people started to leave. I began to worry about the hill I’d have to climb to leave the beach. As we packed up I saw people stroll up. I knew it was going to be a problem.

And I was correct. That little sand dune fucked me up. I started trying to ascend it alone, but quickly realised that wasn’t going to happen. It’s hard to get your footing on slopping sand. Even harder to get purchase in moving ground with a walking stick. With every step the sand slid down the hill pushing me back. It was all working against me.

Foot with black painted tie nails on the sand with wave approaching

My sister saved the day. She let me lean on her, literally & half dragged me up that hill. Every step was excruciating. My knees felt like the where going to explode. My back, wrists, elbows & shoulders were all screaming. I couldn’t catch a breath, my lungs felt as though they were filling with the sand I was slipping on.

That little sand dune appeared to go on forever. The bench at top a promised land I’d never reach. Listen, the pain was bad, it wasn’t the culprit of tears at the summit. As my sister helped me struggle I saw my 3yr old nephew gamble up the slope. An old couple comfortably passed us. A nice man with a very concerned look stopped to ask if he could help. I focused on breathing whilst my little sister pepped talked me up that hill. I repeated ‘you’re nearly there’ in my head and tried my upmost to hold back the tears.

When I finally had my bum on that bench my nephew ran to give me a cuddle. The tears started streaming. I looked at the beautiful view as I silently cried. I didn’t want to make eye contact with my loved ones. I didn’t want my little rascal to see me in this state. I recognised the concern in my sister’s voice & the love in the silent shoulder my Mum offered to hold me upright. As much as I loved them for it, I hated that I have to be this way.

View from hill over a beach.grass & wildflowers with sand past leading down to the blue sea

It was another one of those ‘how did I get here’ moments that chronic illness brings. I never imagined it’d take a support team to get me up a hill at 40 years old. I’m not a person who likes to be publicly vulnerable, yet here I am. Regularly fragile & exposed as I try to scratch out something close to a normal life. I felt guilty and embarrassed and pathetic and grateful and burdensome and scared and loved. All crashing over me with more force than the waves below could ever muster.

I concentrated on the nature around me as fought to compose myself. I attempted to ignore the curious looks from strangers & the pain coursing through my body. I listened to the the waves and birds. I let the blue horizon pull me through all the heavy implications placed on the people I love. I dried my eyes. I got back on my feet.

The day continued. Me, making my way slowly behind the others. Stopping to rest. Taking pain relief. Zoning out when we got back in the car. It was all so much bigger than that stupid hill. I was hoping I hadn’t distressed the others. Dreading the pain that I knew was still to come. Feeling sad at the thought that I probably wouldn’t ever return to that blissful beach.

It is painful to accept one’s limitations. I find it incredibly hard to let more & more go. I hate that I’m always the one who has a problem with the plans. I despise that my difficulties are so visible. Gasping for air at checkouts that take a fraction too long. Sitting on floors when there’s no seats available. Calling in advance to check if my malfunctioning body can be accommodated. I don’t like being on display, don’t want to answer questions about my stick, shake off the exasperated sighs or smile at pitying strangers. No matter how kindly meant, I’d rather be suffering in private. I’m exhausted by the knowledge that I’ll pay for every slice of fun. Even more so by the battle with myself to keep reaching for those good times anyway. Most of all I’ll forever regret how much this impacts all the wonderful people in my life. I wish I could stop being a hindrance. I never want them to have to worry. I appreciate every tiny thing they do for me, but I still wish they didn’t have to.

This is chronic life. It’s not just the pain & illness. It is all encompassing. Lots of the time the only way to deal with that is to push it to the very back of your mind. These moments of brutal clarity never stop taking me by surprise.

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