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Tag: life

Cystic Fibrosis

The unravelling

Monday the 21st of October, 2024

It feels like a lifetime ago that I was pulling myself up the climbing walls – but it wasn’t, not really. Just last year, I was still at it. Though I was gasping like an asthmatic hamster, there was a buzz in knowing I could keep going, keep fighting through. It felt like a battle …

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Cystic Fibrosis

The air we bear

Saturday the 22nd of June, 2024

When I write more extensively than just notes about my day or health, I often delve into the depths of my spirit, my feelings, and my thoughts. This time I want to explore what’s happening in my physical body as well. However, the two are so closely intertwined that I cannot write about my body …

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Ponderings

UniVerse

Friday the 24th of May, 2024

Forty-fourThere once was a gal growing old,Whose body felt terribly cold.With each creaky wheeze,She’d laugh with a tease,“Forty-four is pure gold, I’m told!”Her lungs may have lost their fine flair,And solitude seemed quite the scare.With each little cough,She’d jokingly scoff,“At least there’s still some life to spare!”She’d say with a twinkle so bright,”Though dark now, …

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Cystic Fibrosis

Voilà, regardez-moi

Saturday the 27th of April, 2024

You might occasionally find me looking quite despondent, and it’s not just due to the typical dreary weather or the dismal state of the world. It’s the overwhelming effort each breath demands that tends to dampen my spirits, despite employing every strategy imaginable to manage daily life. Sleep rarely offers respite, feeling as taxing as …

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Cystic Fibrosis, Ponderings

Echoes of loneliness

Tuesday the 28th of November, 2023

Earlier this autumn, I was fortunate enough to experience Luke Jerram’s Gaia. Beneath the glow of the globe, every breath was a testament to both actuality and resistance. In that moment, loneliness was not just a feeling, but a palpable presence, a silent companion as we hurtle through the cosmos. Gaia’s presence served as a …

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Cystic Fibrosis

Thin as rice paper

Thursday the 20th of July, 2023

Once a month or so, I meet up with some friends to tell stories. It’s a lot like a book club, but instead of reading a book we draw a prompt from our storytelling cards from The Moth. Last time we met, the prompt was Burnt: when the candle burns at both ends. Life and …

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Cystic Fibrosis

A page too white and ink too thin

Wednesday the 16th of November, 2022

I shift through phases where I feel the need to describe my world, because living in an undescribed world is too lonely. I’ve spent so much time grappling with this disease, and naturally, it has shaped me. Yet, I can’t quite suss out how to integrate the complications of it into the world around me. …

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Cystic Fibrosis, Ponderings

I want to live boldly

Friday the 11th of June, 2021

The sun’s been out for a while now, bringing everything and everyone to life, like a shower of energy. It makes me leap out of bed in the mornings, warms my skin, and soothes my soul. It fills me with hope! Yet, I’m in an odd place emotionally right now – probably because I’m a …

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