‘Winter’s Bone’ is a recent film set in the extreme environment of the Ozarks Mountains in Missouri, USA where a young girl is looking to find her father and hold her family together. In my own real-life version, I am hunting for better lung function during the winter period.
So why is winter particular harsh for the CF community?
My lung capacity in the cold, damp and wet weather is always reduced. Add to that the fact that there is less light and with that a decrease in everyone’s energy levels. However, most CF sufferers already have less energy to play with so we really notice how winter diminishes our energy stocks.
Like the Overlook Hotel in the Jack Nicholson film ‘The Shining’, my body seems to close down during the winter months. Everything feels restricted and I have little vibrancy.
Everywhere I go at this time of year I am engaged in the dual conflict against the wintry elements and the preponderance of colds and flu in the office, on the London underground or in peoples’ homes.
As with the majority of people, it’s quite natural to feel at a lower ebb, which in turn makes me even more susceptible to coming down with a cold. It’s almost inevitable that I’ll catch something at some point during this fateful time.
“Now is the winter of our discontent.” William Shakespeare
This winter in the UK has been a bit of a mix bag with cold periods blended in with some reasonably mild weather which in-turn brings more damp and wet conditions. I find that my lungs are like a barometer. In the mornings on waking up, I can detect what the weather’s like before I even open the curtains based on how my lungs are feeling. Maybe the Met Office should ask CF people to detect the forthcoming weather for them??
In some ways CF is similar to Seasonal Affective Disorder, as it’s not just a disorder for one season but a condition for every season with seasonal symptom variations depending on the climate and conditions. These require the appropriate seasonal adjustments to effectively manage the variations and stabilize my health.
During the winter months, I tend to run on the local roads rather than in the park behind our house. Due to my reduced lung capacity this can be very dispiriting. I have real difficulty going for jogs anyway, but more so at this time of year. Indeed, trying to find an appropriate window of opportunity to get outside to exercise can be a challenge, in between the rain and the bitter cold.
I’ve never been one for gyms, partly due to the feeling that I would be in ‘competition’ with healthier people therein, but predominantly because if I needed to cough hard or clear my lungs, a gym is not terribly conducive or discreet.
Recently, when I’m running I try to push myself on and occasionally end up swearing out loud – partly at myself as a form of gee-up and partly at the frustration of my harsh health situation. With all this swearing, it amuses me to wonder whether anyone that has seen me out running considered if I had Tourette’s syndrome!
There’s a tough balance to be found between letting the weather curtail all exercise and being bold and going out running when it could do more harm than good. More fool than hardy you might say… In the past I have been too bullish for my own good and a jog at this time of year has led to a chill, followed by a cold and long-term infection.
It’s at this point that my lungs can go from being relatively clear (well clear for a CF person anyway) to sounding like the rumblings of a cement mixer, seemingly overnight. Getting a cold is harsh for everyone but it’s the way that it affects our chest for a long time afterwards that sets us CF sufferers apart from our fellow healthy humans. Coming back to better health after the ravages of a cold is a long, debilitating and all-encompassing journey. More often than not, a dreaded course of intravenous antibiotics and increased medication are the only ways to fight fire with fire.
I try to counter the devastation of winter by having the flu jab and taking St. John’s Wort, extra Vitamin C and other over-the-counter immune boosting supplements. I also use a lot of sanitizing hand gel where ever I go – I probably look like a modern day Dr. Kildare continually wiping my hands but without the white coat and stethoscope!
These seasonal tactics are all aimed at building my defences – fortifying the ramparts of my castle of health if you will.
For practical reasons, the winter months are more frustrating when dealing with my CF and diabetes medication. I am usually wearing more clothing layers so to get to my skin for insulin injections is sometimes a real feat of engineering.
The extra immune system vitamins and supplements all take that extra bit of time to swallow which delays me even more when rushing out of the house to get to work in the mornings.
I often have to add in another nebulised drug in the evenings which again takes time, planning and effort.
Physiotherapy usually takes longer in the winter months with extra ‘dream sessions’ just before bedtime when I’m almost too tired to do the chest percussion (patting) but I know that I’ll get a better night of sleep if I knuckle down and do it. This often means going downstairs from where Katie and Felix are asleep and hoping that my coughing does not wake them.
Smiling in January
I once sat through a wedding sermon where the vicar asked the marrying couple whether they would still be holding hands and smiling (as they were on that summer day) in the month of January i.e. would this couple still be so in love with each other when the weather and outlook was depressing?
This really resonated with me and I now extend this analogy to my health during this horrid month. My health is usually perkier in the summer months and with it, I feel more upbeat generally. In a life battling CF it’s the wintertime, and in particular January, that is the toughest to combat and stay jolly and optimistic.
I think of this when I need a pep up, knowing full well that spring is around the corner and following that the warmer weather and likely better health of summertime. Despite all that winter throws at me, I’ll try to avoid that frown and keep smiling in January…
“In the depth of winter, I finally learned that within me there lay an invincible summer.” Albert Camus
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 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 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 http://www.cftrust.org.uk/