Sicklyknitter » Cystic Fibrosis Archives

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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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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There’s a mountaintop

Monday the 3rd of June, 2024

Recording our latest sINgSPIRE virtual choir song, There’s a Mountaintop, was quite the endeavour! I had to split the vocals into so many parts that our audio engineer, Pete White, undoubtedly needed a strong cup of tea afterwards. I could almost see him rubbing his temples as he painstakingly pieced everything together. Unfortunately, the video …

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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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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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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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Catch me when I fall

Monday the 3rd of April, 2023

As a young adult, I had a small circle of friends with cystic fibrosis. But as we grew older they started to get really sick and die. Illness is a funny thing; I guess it either brings you together with other people in the same predicament, or it forces you to search with urgency for …

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The destroyer

Thursday the 1st of December, 2022

It’s not easy to accept this disease for what it is, a destroyer; causing so much pain, both physical and emotional. Even so, as I share this from my journal, just remember that I’m a proper bitch! This is just a glimpse into what’s been going on. Besides, now, a fortnight later, I have regained …

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