‘There’s always someone worse off than you.’ Taking time out to manage my debilitating illness cystic fibrosis (CF)* has allowed me to evaluate this saying…
Just like a greyhound chasing and finally catching the rabbit, my CF has caught up with me again. My lungs have deteriorated enough that I required some intravenous (IV) antibiotics. Though only a moral victory, this is the first time I’ve had to endure an IV for 16 months, which is the longest period I’ve gone without such an intensive treatment since my teens.
However, it means taking time out from the real world and my busy life in London as a business consultant, husband and father for a spell of recuperation time with my mum in Southampton. It’s proved to be a real shock to the system. Being away gets harder with every year that passes. This was reinforced by Katie relaying to me that Felix had recently said “I want daddy!”
It serves as a harsh reminder for this 42 year old that I can run but cannot hide from my unforgiving illness. One always feels hunted down by this condition.
In the last two weeks I’ve been through the mill. As well as feeling very washed out, the IV drugs have given me a few nights of delirium; one in particular was so fierce that it gave a new meaning to ‘Saturday Night Fever’.
As these IV treatments can take up to two hours three times a day and I’m still maintaining my usual CF and diabetes medications, a significant chunk of each day is medical related. It feels at times like a tag team event between each different drug.
I’ve also had to put up with a persistent pain and discomfort where the PICC IV line goes into my arm which recently had to be re-dressed at the local Southampton General Hospital.
Yes, it’s been rather a torrid time to be honest and it’s initiated in me the first really depressive thoughts for quite some time. At such times there is a natural tendency to really cover oneself in the bubble wrap of despair.
I have been able to utilise the little downtime to spend quality time with mum, see my brothers, my elder brother’s family, local friends and I did have a form of day-release to meet with Katie and Felix half way between Southampton and London. I’ve also been able to visit the rest home of Betty Lacey, the wife of Ken whom I featured in my last post ‘Always there’.
In this departure from reality I’ve had more time to view the outside word from within. See below a snapshot of CF news I’ve heard from local friends in Southampton or seen on social media, TV and in the press:
- A mystery CF diagnosis of an infant storyline on the UK TV programme ‘Call the Midwife’.
- A local Hampshire girl, Sarah, is responding well to the new lungs following her much needed transplant last November.
- A 31 year old mum in Ireland is belatedly diagnosed with CF following the diagnosis of her own child. She had been treated for chronic asthma all her life and CF had been missed.
- The UK CF Trust have kick-started their 50 year anniversary activities with CEO, Ed Owen, on BBC Radio 2 talking about lung transplants but also launching their ‘No Party’ theme – highlighting that CF is no party as well as mandating that they won’t party until all CFers make it to at least 50!
- A 38 year old CF adult from London, Nick Talbot, is hoping to climb Mount Everest in June. Nick is an experienced mountaineer and is boosted by the wonder CF drug Kalydeco.
- A worried dad in Australia asking for help and advice for his recently diagnosed two month old daughter.
- A girl, claiming she was not a CF sufferer, on an online CF forum berating all CFers for making light of their illness with their ‘gallows-style’ humour.
- CF adult advisor for Scotland, Yvonne Hughes, taking part in a trial to see if singing can help lung function for CFers and separately signing up for the Great Scottish swim later this year.
- Danish scientists have discovered a natural garlic compound, ajoene, which could help fight CF infection. Tests are being carried out on rats. (Apparently, the male rats claim their lungs have never felt healthier but the females have stopped kissing them!)
- The British actress Jenny Agutter featured in a Daily Mail article that focused on her niece who has CF and the possibility that two of her siblings could have succumbed to the illness.
- My cousin from Oxford, Sarah McNaught, has sent out a donation website ahead of her wonderful commitment to run the London marathon in aid of CF.
- A wife asked for prayers as her husband was rushed to hospital in America to receive his donated lungs.
- A much loved 15 year old boy in America and a beautiful 23 year old girl from the Faroe Islands sadly passed away due to CF.
This full spectrum of news demonstrates that CF is a global condition and engulfs many people – from the sufferer, to their immediate family and associated friends. The last two sad stories are pretty commonplace on the web and provide the quickest antidote to any self-pity I might ever feel.
The news highlighted that there are very few winners with CF and helped me to re-set my mind set to the truth that even though I may be having a tough time in my microcosm of IV frustration, that there is always someone worse off than me. I can never be grateful for my suffering but I am deeply appreciative of every breath I take and any extra time I have in this world.
Taking time out is never going to be easy but it is vital to help galvanise my health so that I can return to my fulfilling life in London. However difficult it is to achieve, perhaps we can all benefit from occasionally taking time out to see the bigger picture around us?
I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading and sharing my blog and sign-up (on the right hand side tab) if you have not already done so.
Yours cup half full.
* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,000 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.