The best of me…

Dear Baby,

Today would be your 20th birthday. I’ve had the time it would have taken for you to become a man & still the wound is raw. It seems that a certain amount of pain will always be part of being an invisible Mum. I miss you and all your siblings. Even though I never got to make real memories, I hold our phantom family in my imagination.

My life will always be less for your absence, but I’d never forgo the time that I carried you. You will forever be the very best part of me.

Love always,

Mum.

The hurting time…

Chronic illness becomes a way of life. You don’t stop feeling bad, but you do get used to it. Humans adapt. Pain becomes the new normal.

Most days spoonies deal with symptoms that would send healthy folk to the Dr. On bad days many would be considering 999. Chronic peeps, however, muddle through. Sometimes flare ups floor me. There are days when brushing my teeth is an epic feat. Others I function to varying degrees. I work & play & everything in between. Always, though, I hurt.

I pay the price if I over do it. I carefully plan routes & venues around how many steps will be required, if there is seating, stairs & so on. I pre check menus for items that won’t make me sick. Plan meals around when meds need to be taken. I do everything tired. It’s so hard to sleep & even when I do crash I wake feeling little difference.

Selfie of women’s sad face.

I found a way to work around my illness. Squeeze pleasure out of any socialising I can manage. I have become accustomed to cancelling things I really wanted to do. The list of things my body is no longer capable of grows. It’s ridiculous how sad felt upon realising I won’t jump on trampoline or turn a cartwheel again. Especially when I don’t even have much desire to do either. It’s just another limit. Another no.

I persevere. I follow Drs orders. I try all manner of suggested remedies. Acupuncture, cbd, floatation tanks, tens, yoga, the works. Some treatments help. There are medications that work wonders. Others that I need, but that cause problems. I take drugs to counteract the side effects of other drugs. It’s exhausting, but it’s my life.

Hand holding 5 pills of various shapes & colours

It is not all bad. I have privileges that many do not. My home is warm & safe. I have access to excellent care. I am gifted with skills & talents that allow me to pursue work I love. I have safety nets. I had years of being fit & well. I went to uni, got stuck into the partying & had the chance to travel a little. I’m loved. Pleasures great & small find me. My cat is the cutest. Life could be worse. I can handle this.

Cute black and white lying on back fluffy belly exposed

Except when I really, really can’t. There are days when chronic life overwhelms me. Days like today, when every inch of me is sore. Keeping a brave face when you’re throwing up for fifth time in as many hours is a challenge. Every day my first sensation is agony. Aching joints. Throbbing head. Burning skin. Churning stomach. Each little movement hurts. Remaining sedentary isn’t an option either. My arthritic parts seize up. Leading to, yup, more pain.

Food refuses to stay in my stomach. Don’t eat & the acid bubbles up my throat. Attempt to line my raw stomach and the vomiting makes everything worse. I can’t concentrate enough to distract myself. Sleep is illusive. There’s no escape.

Burdening others with my misery triggers my guilt. Keeping it all in is horribly lonely. Pain relief doesn’t work. Positive thinking is way out of reach. Some days are hard. It is too hard be grateful. Impossible to hang onto hope of easier times. Today I’m just thoroughly sick & tired of always being sick & tired.

Plus size women in green leopard print maxi dress  with walking stick

Woman of the week…

It’s been a while, but a truly incredible woman inspired me to bring back the honour roll . This week’s epic woman is the fearless Hannah Gadsby

I had picked up on a little social media buzz about her latest stand up show, Nanette & headed onto Netflix to give it a watch. I expected some laughs. What I got was the most raw & uncompromising show I have ever seen. Hannah Gadbsy is a feminist hero. She begins by mixing jokes about her trauma with humour & explains how she balances tension to create relief with a punchline. Then, she bravely recounts her stories without relief. She gives us her reality.

Hannah Gadsby

She rails against violent misogyny & homophobia. She describes unflinchingly how being raised in an environment that teaches you to hate who you are cripples a child. She throws in the quips, but she never let’s the audience off the hook. She forces us to recognise her truth and her anger. She exposes her (& all our) need to honestly tell our stories. Her pain is palpable. Her courage is beautiful.

I beseech you all to watch Nanette. It is a masterpiece

Woman of the week…

Sierra Demulder is a feminist poet. Her work is raw, powerful & on point. Her humour is displayed where appropriate, her pain when neccessary. She covers topics dear to my heart. In short her poetry blows me away. 

I think it is vital that we talk openly about feminist issues. It’s so important to dispel the old tropes & teach girls ( and women) that their voices matter. Poetry is the perfect vessel for rage, passion, joy & fear. It’s a beautiful way to be heard. It’s also a beautiful way to encourage woman to speak out loud, to give life to all the thoughts banging at our skulls.