What would be the image that conveys your daily life? Here is mine showing my battle with the chronic illness cystic fibrosis (CF)*…
They say a picture paints a thousand words and this ‘day in the life of’ really hits home.
Every day, without fail, this is the ‘day in the life of’ someone with CF and diabetes.
My daily pick n’ mix of 40 tablets comes in all shapes and sizes, including some extremely colourful pills, which break up the monotony. I employ many shrewd tactics like bundling a lot of the smaller pills together for just one swallow and taking my time for any horse size pills!
This smorgasbord of medication includes antibiotics, inhalers, nebulised treatments, insulin injections, steroids, supplements and vitamins.
By the way – this is not a complete picture because it does not include the physiotherapy sessions at least twice a day (each lasting over 15 minutes) and the horrendous intravenous (IV) therapies which account for four to six hours of a day.
There are no days off this regime, no remission; it is relentless and all-consuming. Think of it as a scary rollercoaster ride that you can never get off.
“One more bloody thing!”
This phrase is often screamed by me internally or shouted out in frustration when this regime feels never ending and gets the better of me. After all, nobody is perfect and I defy anyone to have this quantity of daily treatments and to never get annoyed.
To take this many pills throughout the day has required me to form strong habits and station the different medication around the house and in my work and social bags, so that I have consistent triggers and reminders.
It’s sad to note that even if I am 100% compliant with this regime, it only gives me the health and lung function that the majority of people would despise. I certainly never take the health I maintain for granted.
Imagine trying to fit this quantity of medication into your day? Envisage how these treatments would be compatible with your daily life, work, family and exercise?
Another integrated factor is the effect that this level of medication and unstinting regime has on the energy levels and mental health of a sufferer, especially on special days of the year like one’s birthday, Christmas and anniversaries. It’s therefore understandable that it regularly becomes all too much for us and can feel depressing…
A new hope
Now imagine adding more pills to this mix?
There is some new medication (called Orkambi and Symdeko) from the biotech company Vertex which is available in the UK. These ‘precision treatments’ focus on the underlying cause of the illness rather than just treating the symptoms. Because of that, they are more likely to improve my lung function, reduce chest exacerbations and limit the need for expensive and time-consuming IV therapies.
But alas they are not currently funded by the NHS, although talks are ongoing to break this deadlock or should I say dreadlock.
As most people with chronic conditions have a dark sense of humour, the crucial thing for the CF population is that these Vertex treatments are ‘just’ pills (and pretty coloured ones to boot) so it will be an absolute doddle to take them and easy to add to our ‘forty-a-day’ habit.
I can certainly find some space on my ‘day in the life of’ image for four more tablets!
I am not publishing this post to seek pity from the non-CF community who read this blog, but just to improve the understanding and appreciation of CF, what we go through and the incessant maintenance required.
One of the biggest hurdles in this CF life is our interactions with the non-CF community. When I reveal my condition to strangers at work or socially, the majority just glaze over with what I’m telling them. Perhaps this ‘day in the life of’ image should be shown in the future?
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.
Worth a watch> My illuminating interview with the marvellous Adam Cox on Modern Mindset video where I share more about my medical regime, as well insights about my survival secrets, positive thinking, how living in the moment enables my life & lessons learned at work.
* Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases, affecting over 10,500 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.