Sicklyknitter » cystic fibrosis Archives

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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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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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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Blaze of every breath

Monday the 31st of May, 2021

The sINgSPIRE Virtual Choir recorded a song earlier this year. I’d been really unwell for quite a while and didn’t have the breath to record it in one take. It left me a little despondent, but our choir leader is so supportive and spurred me on. Something I’m ever so grateful for, as I don’t …

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April is the cruellest month

Friday the 9th of April, 2021

I’m halfway through week three of intravenous antibiotics, and it’s taking its toll. I’m feeling quite worn down, and life is heavy. Sometimes it’s difficult to distinguish between the side effects of the drugs and the infection, and I can’t shake the fear that I’ll finish this course of IVs and still feel sick. This …

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Between me and the rest of it

Friday the 27th of March, 2020

I’ve been wanting to write this post for a while, but it’s been difficult for several reasons. One reason is my very conflicted feelings about this whole COVID-19 situation. I feel them all: annoyance, anxiety, fear, gratitude, calmness – often all at once. Just over two weeks ago, the WHO declared this outbreak a pandemic. …

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We Give Voice

Wednesday the 15th of January, 2020

Every so often, I get asked, ‘How can you sing with your lungs?’ I never know how to answer other than to say I work quite hard at it. However, I’m pretty sure I would have given it up by now had it not been for my very good friend and singing teacher, Ashley Ballou-Bonnema. …

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Tag: cystic fibrosis