Ahead of tomorrow's book signing at Waterstones in Wimbledon the final extract from 'How Have I Cheated Death? A Short and Merry Life with Cystic Fibrosis' by Tim Wotton is on drug adherence and commitment:
Why would I want to cut corners and miss my medication? Even when I take all my medication, it just about maintains my health – it never cures. I would feel a lot worse if I missed any of my treatment regime, so what’s in it for me to risk that? After all, I’m only as healthy as my last treatment. It is important to control the parts of my illness that can be controlled. Manage the manageable. In rowing terms, I control what’s going on inside my own boat rather than fixate on external factors.
I have calculated that for every 24 hours in a day, at least two hours are spent doing something medical. A positive way to view this is that leaves me with 22 hours to do what I want to do each day so I take pleasure in the hours I have and not the hours I lose.
22 hours for Tim Wotton and 2 hours for CF.
My treatments are something I do to get out the door and get on with my busy life – they are my enablers – they have become a second nature activity like brushing my teeth. This is engrained in my subconscious by constant repetition so that eventually my body begins to remind me what to take and when. This can only happen by taking ownership of the condition rather than relying on others to be my conscience. For me, it’s been a case of building habits and over the years I have become pretty competitive with myself to adhere to the regimen. Conversely I am prone to getting annoyed with myself when I forget any part of my treatment.
If my routine is altered which is likely when I’m travelling, on holiday or in a work conference, it does affect my medical management and I have to focus even harder not to miss any facets of my regime.
In dealing with CF I have tended to match fire with fire. I’m bullish about getting my own way from hospital visits and I’m probably a pain to medical staff at times. I read my own body signals and thus don’t always wait for the doctor to tell me about changing my antibiotics when I already know what drug to take and when to take them. I try to keep on top of the condition and look for new ways to ‘boss’ my illness with changes of drug, alternative therapy or new ways of positive thinking.
I won’t back down.
I one hundred per cent respect my illness, know my many limitations and look to avoid the ‘CF banana skin’ of trying to dismiss it and not take it seriously enough.
A lot of willpower is required to win this ongoing battle. When you get to a certain age you tend to balk at doing things that you just don’t want to do and believe me doing my treatment is the last thing in the world I want to do. I have to knuckle down every day of my life and continually do these unpleasant acts of medication. I only get out of my body what I am prepared to put into it.
I do at times have to bite my tongue when people I encounter complain about their short-term health issue but do nothing about it. Or those that make a big fuss at the dinner table about taking just one tablet. I’ve also witnessed guys who milk their condition or injury for all it’s worth and feed off of the novelty factor. These are often the same people who don’t take any medication to get it fixed but prolong their own agony and that of those around them. I prefer to say nothing and let my actions do the talking. But I’ve had nearly 40 years to get used to my afflictions – I’ve never known anything different.
I have to respect this illness 365 days a year and especially at times when I would rather kick-back and have some time off: Christmas day, birthdays, my wedding day and honeymoon, holidays, travel, before and after work – I don’t get a day off with this condition. The symptoms of CF and diabetes don’t take a day off and neither can I. I can take a holiday but CF doesn’t take a holiday from me. I’ve calculated that if I had just two weeks off from taking all my various medications, I would be seriously ill in hospital.
If I fail to prepare for daily eventualities, I am preparing to be caught out and potentially be affected. Following a ‘just in case’ mantra, I always plan for the next day, work, social commitments and the weather. My work bag is always stocked with my daily pills, insulin and dextrose energy sweets. I bet I’m one of the few men who would go out on a stag do armed with an umbrella so that I don’t get wet and damp! As soon as I’ve played sport or if I get caught in the rain, I’ll take a shower to avoid catching a chill. It’s being spectacularly practical rather than spontaneous. Spontaneity is something that happens to other people who live in a parallel universe to me.
I get angry on a daily basis about my drug regime, but I have learned to channel that anger and frustration. I focus my thoughts on what activity – tube to work, playing sport, game with my son, meal with my wife, night out with friends – I will do once that piece of medication has been completed, rather than on the actual treatment itself. I very rarely vent my anger and frustration with those around me and I’m learning to be more open as I write this diary.
I re-join my body back on the bench. I’m now calm and at peace as I sit in the delightfully calm twilight moment that only really pervades on a still summer’s evening. I think of friends who can just exist without having to put themselves through this form of exercise torture and I envy them. My God, I envy them. Sometimes I feel that ignorance would be bliss.
However tough it is for me to bear, exercise is my version of treading water in the ocean. Once I stop, I’ll drown and that will be it. I’ve literally got no other choice but to keep on going with it. By forcing myself to breathe hard while exercising, I in turn breathe life into my lungs. While there’s still breath left in me, I will continue to run for my very life.
Everyday I’m shaken by my disease but I try not to be too stirred and respond by shaking it back. After all, I’m still here. I’m still running. I won’t back down.