They say the best form of defence is attack. After a lifetime battling a relentless illness, I’ve learnt to fight it by being just as relentless back…
Being ‘relentless’ means showing no sign of stopping or becoming less determined; remaining constant at the same demanding level.
Anyone struggling with a long term chronic health condition like Cystic Fibrosis (CF)* will have uttered the immortal words: “Why me? What did I do to deserve this rotten illness?” It’s hard not to be angry and bitter and this can result in acts of rebellion and self destructive behaviour, usually starting in your teens.
I drew the line at smoking as with a lung disease that would have been like signing my own death certificate; but I certainly liked to ‘cut loose’ and forget CF through partying hard and alcohol.
Nicknamed ‘Tiles Tim’ by my Dad, I had an insatiable appetite for socialising and partying. I would try to go to as many parties a night as I could fit in and would often go weeks without a night in. Indeed, I was well known for going to the opening of an envelope!
This spanned my late teens, through University life and all my 20’s. I wasn’t sure of the length of time I had left on this planet so I made the most of any chance to have fun and live for every second.
However, as hard as I socialised, I still tried my utmost not to miss my treatments and medication; knowing that my condition had to come first. I could keep my health reasonably balanced by not cutting the medical corners (even when hungover!). This mindset was instilled and embedded by my parents and has served me well all my life.
Why would I want to cut corners and miss my medication? Even when I take all my medication, it only 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? It is important to control the parts of your illness that can be controlled.
I have also realised that staying healthy doesn’t just rely on a compliance to taking my medication, it needs something more – an absolute commitment to keeping well – actually ‘wanting to’ rather than ‘having to’ be healthy is very empowering. I have found my own motivation.
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 your conscience.
Ask not what your body can do for you, but what you can do for your body…
In August 2009 I was taken out of any ‘health comfort zone’ when I was diagnosed with CF related Type 1 Diabetes (insulin dependent) and I needed to add a new treatment and mindset to my already strict regime.
I have become quite obsessed with having stable blood sugar levels, making the insulin work to my advantage – I have had more energy and less lung infections – a positive result out of a negative situation.
I do joke that at last I have a condition (with Diabetes) that people have actually heard of! CF is not well understood and some people are more concerned about my Diabetes than my CF, usually because they know more about Diabetes – I politely inform them that CF is more likely to get me first…
Your body needs you
In dealing with CF I have tended to match fire with fire. I’m bullish about getting my way from hospital visits and I’m probably a pain to medical staff at times. 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 one hundred per cent respect my illness, know my 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’ve said it before and I’ll say it again, I have to respect this illness 365 days a year: 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 get angry on a daily basis about my drug regime, but I have learnt 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 etc) I will do once that piece of medication has been completed, rather than on the actual treatment itself.
There are encouraging trials taking place involving gene therapy and the bottom line for me is that when that comes knocking at my door, I better be ready and in good a shape as possible to maximise the level of cure or treatment it will be.
I still ask myself “Why me?” but it has a different connotation now – why am I still here, what’s the bigger plan for me and what can I do to make sure I keep staying here?
READ ALL ABOUT IT – For those that missed it last week, my story and blog featured in the Guardian G2 Health section on 15 February. Click here to view the article…
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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