A recent anniversary caused me to reflect how important being in a relationship has been in sharing the mighty burden of my chronic illness cystic fibrosis (CF).*
Last Friday my wife Katie and I celebrated our 10th year wedding anniversary with a trip to Brighton, East Sussex, for some sea air and fun on a sweltering hot day. During the anniversary, as is the norm on such days, we discussed our memories of our wedding on a similarly scorching day. We also raised our champagne glasses and toasted this significant milestone.
For most of my life, such an event had been unthinkable. Growing up, with the worry of a life-threatening condition, I never thought I’d live long enough to ever be married, let alone to be actually toasting anniversaries.
For most of my teens and twenties, the cosy image imagined by many of marriage, two kids, lovely house with a picket fence was one that I never envisaged. Outside of a few close relationships, I chose not to look too far into the future and mainly adopted a similar approach to marriage.
In December 2000 things changed dramatically when I began dating Katie, who I already knew for over six years from the South London hockey scene.
In March 2001, Katie helped me to celebrate my thirtieth birthday. This was a major tipping point as I had made it to the average life expectancy (as it was then) and the noose around my neck suddenly didn’t seem so tight. Life suddenly felt different and I had an eye on a renewed future with someone special to live it with.
We got engaged in late 2002, joking that our wedding vows should be changed from ‘in sickness and in health’ to ‘in sickness and in sickness’. Marrying someone when you know that their life could well be cut short does feel extremely daunting. It’s the true test of our love to have my longevity permanently hanging over us.
On 19 July 2003 we married on what was a truly remarkable day. Benjamin Franklin, one of the Founding Fathers of the United States of America, once said of marriage: “Keep your eyes wide open beforehand, and half shut afterwards.” Well on that day my eyes were most definitely open and I felt blessed to marry Katie with all our close family and friends at our side. For me, it was another defining moment in my life where CF was not the focus.
As the life expectancy of CFers increases year-on-year, more and more ‘normal’ life activities are possible and this includes relationships and marriages being considered routine and natural. However, relationships involving a CF sufferer (and in some cases between two sufferers) can be more of a challenge at times and not for the faint-hearted…
There are a lot of functional activities that come with living with someone with any long-term health condition. At the basic level with CF this includes being close to physiotherapy, constant coughing, nebuliser sessions and debilitating intravenous (IV) treatments. These are not fun, sexy or interesting times – it takes a special type of person to be around these daily treatments and keep seeing the person ‘behind’ the illness and not get too sad, disheartened or bored.
Outside of the usual spats that accompany marriage, there’s a whole other layer of activity that can put pressure on a couple where CF is part of the dynamic.CF care is not like being around a partner as they quickly get over a case of the flu. Ours lasts forever, takes no day off and is utterly relentless.
Of course this is not for everyone. People often say when they’ve found the right one and they ‘just knew’ that they were with the right person. Well with CF I’d add another ingredient – I ‘just knew’ I’d met someone who could cope with my condition without making me feel like a permanent patient.
In my case, Katie, a senior urology nurse, understood my condition and has always taken the harsh sights and sounds of CF in her stride, never making me feel overly conscious or affected. She understood the bigger CF picture but was never noticeably phased or unduly worried; maybe feeding off my own penchant of downplaying it. I’m sure it probably helped that she had been a nurse on a busy hospital ward with all the patient caring and hard work that that entails.
Katie tends to go into nurse mode with my health issues, in order to not only assist me but to most likely protect herself from the ceaseless nature of handling CF. My mum was also a nurse so I chose well!
She shuts out my habitual coughing and has to manage her frustrations when an episode wakes her at night. She came into her own with my diabetes diagnosis; having had first-hand knowledge of injections from all her IVF cycles, which allowed her to understand and ‘feel my pain’. On occasions, Katie brings her work stethoscope home to listen to my chest for ‘crackles’ in my lungs. For most of our relationship, she has helped out with my physiotherapy and at times takes out any annoyances with her percussion on my body! Well, there’s got to be some fringe benefits!
It’s bizarrely liberating that I’m able to openly pop pills and do my insulin injection in front of my wife. Such acts that I normally keep hidden away from people can be conducted with a sense of freedom around loved ones. In this sense, Katie is one of the chosen few, the ‘CF circle of trust’, who I don’t have to hide my CF treatments from. Although not immune to the sights and sounds of my illness, she is someone that deals with it unflinchingly.
She has taken the largest hit on the childcare of our son Felix, especially the years of night time wake-ups. Katie has acted almost as a single mum when I’m away having stressful IV medication. IV courses exact the most out of our marriage either when I’m away and unable to help or when I am at home, but due to the nature of the drugs, I’m limited in what I can do around the house.
Katie also manages the vast majority of the household chores, regularly informing me that due to her washing exploits I’ve never ran out of boxer shorts!
It is these interventions that have enabled me to concentrate on my vast medical regime and helped me stay reasonably well, when it could have gone the other way.
Getting the balance right
Katie certainly doesn’t obsess over my illness and mollycoddle me. This I believe is a good thing as it doesn’t make CF bigger than our relationship; just something that needs the appropriate amount of daily respect and attention. I believe that there’s an appropriate balance of giving CF the due care it needs but not making it the be-all and end-all; and therefore bigger than the actual relationship itself.
She will reference it if I’ve just had a nasty coughing fit, hospital appointment or she can see my angst seeping out. We always discuss the outcome of each of my outpatient check-ups and she engages me as part wife part nurse.
As I hardly ever complain about it, she might be prone to thinking that I’m not annoyed and frustrated by my daily woes. On the very rare moments when I bellow “My CF is making me angry!” she knows that things must have reached boiling point. When I do ‘break my silence’ she instinctively knows to listen and support me.
On the rare occasions that I have broken down and cried in front of Katie, her resilience is affected and it sets her off as well. We can be defiant and resilient together but when the situation arises, we can also cry together and hold each other. Perhaps, that’s how it should be…
Katie and I have been through both thick and thin times in the last decade – we have traversed many traumatic IVF cycles of IVF, raised a busy boy, endured countless relationship stretching IV’s and battled with her debilitating post childbirth nerve damage. By navigating through the turmoil, we certainly are better than most at being able to identify and appreciate the good times.
Right beside me you are, I am, we are…
I will keep you posted on my life affirming moments, trials and tribulations as and when they happen. Please keep reading, sharing my blog and do ‘sign up’ (on the right hand side tab) if you have not already done so.
Yours cup half full.
Great news! As of early July 2013, this blog reached over 40,000 global visits. My book, charting the year leading to my milestone 40th birthday is on track to be published soon – I’ll let you know when and how to find it!
* 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.