We are all prone to say or think “What I wouldn’t give…” or “For just one day I want…” at different times in our lives. Every day, I think “What I wouldn’t give…”, but my wish is unlikely to ever come true…
Cystic Fibrosis (CF) *, a disease which I have endured all my life, is completely relentless – like an incoming tide battering against a sandcastle. I cannot afford to let up or cut any corners medically, as any big lapse could be my undoing. There is not one day off from this illness – it is like having the effects of a heavy chest cold every day of my life!
What’s in a name?
The two words ‘Cystic’ and ‘Fibrosis’ do not mean much outside of the medical fraternity, the sufferers themselves, their family and close friends. In fairness, the two words don’t really resonate and are hard to say – one young patient couldn’t pronounce CF and settled for calling it ’65 roses’!
In my experience, CF is like a form of ‘locked-in syndrome’ as all the damage is on the inside and not very obvious to the naked eye.
Think of a number
The ‘CF survival regime’ consists of around 40 tablets a day, IV long line treatments for three weeks at a time (the CF version of chemotherapy), nebulisers, physiotherapy sessions and regular visits to hospitals and the pharmacist.
As a rough calculation I swallow 280 tablets every week, which works out at 14,560 a year and 364,000 over the last 25 years.
Also during this time, I have had 10,000 nebuliser sessions, 18,200 physiotherapy sessions, over 50 IV treatments, 600 visits to my chemist and 250 visits to Frimley Park hospital.
All this is merely prevention as there is no cure for CF – it just helps to maintain my current state of health. I am quite literally ‘locked-in’ to my treatment just to stick around.
This regime manages a condition that is not well understood, cannot be easily seen or ever properly imagined by most people.
All this for the blank look I receive when revealing my condition to most strangers – that look where they nod their heads but are thinking “you lost me at cystic but I better keep looking like I understand and care”. That look punctuates the entire life of someone with CF.
I find it sadly ironic that I follow my daily regime with military precision just to stay alive and hardly anyone has a clue!
For just one day
When CF causes me stress, I dream of that day – the perfect day – where I can be spontaneous and take a holiday from my illness. On that special day:
I would wake up and not cough like a 40-a-day smoker,
I would go off to work without needing to find 30 extra minutes for treatment,
I would get in early and leave late without having to factor in when I will fit my medication in,
I would eat lunch with colleagues without having to surreptitiously take tablets when they’re not looking,
I would return to my desk and not need to inject myself with insulin or bleed on my work shirt,
I would go for a run and not need to stop regularly to cough,
I would get caught in the rain and not care at all about catching a chill,
I would have all the energy I need to work and play,
I would go to bed at the end of the day without worrying how a coughing fit might wake up my wife and my son.
What I wouldn’t give for just one day off…
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Look out for my next post as I countdown to my 40 year milestone…
* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 8,500 people. The condition affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food. Each week, five babies are born with the condition, however, each week, three young lives are also lost to it. There is currently no cure for CF. However, existing gene therapy trials in the UK are bringing people with the illness closer to a form of cure but CF is not that well known and would benefit from more public donations.
For more information and to find out more view the CF Trust Website