AMR: A global issue

Antimicrobial resistance (AMR) is an urgent global health threat. A study published in the Lancet in January estimated that in 2019, over one million people died from drug-resistant infections directly attributable to AMR.

I’ve posted about this concern many times (see here and here ) since Cystic Fibrosis sufferers are wholly life reliant on antibiotics in many forms (oral, nebulised and intravenous). I once read, that without antibiotics, life expectancy with CF would be less than 3 years. 

See event details here BIA event

Weirdly I am on the ‘expert panel’ at this event, so if you’re interested, take a peek. 

Have a great day x 

A very young Stevie Nicks ❤️

Diagnosis and ambiguity

I had a thought last night in bed (all my important and very non-important thoughts come to me while going to sleep, all mixed up like half eaten trifle) “today I will write about his diagnosis!”. How it all came about, and how we are NOT inspirational, we are mere parents, doing what we can, what we all would.  Only, I looked back and saw that I’d already done this (see here). 

Maybe my originality blogging has come to an end? Do I only now have the present and future to write about? The present being so mixed, and the future, so fucking uncertain? I wish, deep in my bones, that I could say with conviction that the future only looks bright and full of hope. Only, right now it feels like we’re in a never ending cycle of infection, inflammation and extra treatment (this last two weeks, it’s fever and headaches, an increasingly angry sounding chest and LF down by a further 10%). 

One day, I will write with news of a drug that will treat the underlying cause of Isaac’s rare mutation of the CF disease. Then I will flood you with joy, rainbows and flutterbys. I promise x 

NEWS OF MY NEXT FUNDRAISER COMING SOON! 

Cystic Fibrosis is a life limiting, genetic condition, affecting some 10,000 people in the UK alone. CF sufferers often, as a last resort, need to trade in their damaged CF lungs for the lungs of a generous stranger. To sign up to support organ transplantation, please visit https://www.organdonation.nhs.uk/ and tell your loved ones of your wishes, as even when signed up, the decision becomes theirs after death. Thank you. 

Images: Best friends and best places.

World Mental Health Day

I realise that I’m late to post this. Blame it on my mental health. 

World Mental Health day started in 1992. Far too late, and I’m not sure many of us had heard about it until far more recent years. Historically and still today, it is unimaginably cruel that so many sufferers have faced such denial, hatred, loathing and misunderstanding as they did, simply for being unwell. We live in somewhat better times, but for me, until someone with mental ill-health is understood and appreciated at the same level as someone with physical ill-health, we’re not doing enough. We need to shout louder. And we need monumental changes in medical and social care to accommodate the needs of so many. 

The psychological impact of Cystic Fibrosis cannot be underestimated. Growing up knowing you have a limited quality of life, let alone life expectancy…. I’m not sure I can put it into words. And they are not my words. That is not my story, so I won’t go there. 

One thing I can talk about is the impact of stress and anxiety as a CF parent. Fortunately for me, I was born an optimist. I was nurtured with a fantastic work ethic (and by that I don’t just mean your employment, but also that you have to work hard at yourself). I keep fit. I laugh (possibly too much). I love abundantly, hard, openly. I have an amazing family, friendship group, support system, and I genuinely feel like a lucky person (just one of whom has had a giant shit on from above). I am happy, resilient, hopeful.

All that said, I am on anti-anxiety drugs, and have been for many years. I have suffered mild panic attacks. I have physical *tics which peak after stressful events and cause me physical pain (mine are in compulsive movements in my shoulders, elbows and wrists). At their worst, I guess these compulsions take me hundreds of times a day, on a good day, just dozens. I have self-harmed (not recently at all, but I do very much still understand that urge and associated release). 

I don’t count any of the above as severe or even moderate mental ill health. I am fortunate. And I don’t feel pride in myself for having ‘come through’ these periods, just in the same way I don’t feel proud after getting over a cold. Why would I? 

I am. I felt. I did. 

What I can share is what has helped me (in no particular order, as each has been a unique help at different times); Talking, nature, citalopram, the colour green, silence, good company, hugs, exercise, fresh air, music, books, dancing, spontaneity, love, wildlife, my dog, and all the people I surround myself with. 

The ‘3 Dads Walking’ (read more here) campaign for suicide awareness struck a real chord with me. We need to make suicide prevention an active movement (suicide being the biggest killer of young people under the age of 35). We need to break down these barriers, stiff upper lips, pointless taboos, and open up this conversation on suffering because as certain as death and taxes, we’ll all suffer from mental ill health at some point too. 

Take care, reach out, love greatly x 

*Tics can happen randomly and they may be associated with something such as stress, anxiety, tiredness, excitement or happiness. They tend to get worse if they're talked about or focused on.

Kandinsky love x