A few days ago my husband and I celebrated being a couple for 10 years. Ten freaking years. That makes me feel really old. It is also really special. Not only because that is more than one third of both of our lives but just on the quiet, I think my man is secretly Superman. As a dear friend once helped me understand, choosing to love someone with chronic illness is brave. I don’t typically like that word – I think it is over used, but to me it is appropriate for the special kind of human that chooses to open their heart fully knowing that there is a big chance that at some point they will loose the one that holds it.
There are many times in our relationship when the reality of that has felt uncomfortably close. Cameron has seen me at my rawest of raw. The walls of vulnerability were broken down long ago and he has gently loved and nurtured what he found on the other side. That has changed us as people and as a couple, sometimes for the worst but overall for the best. It has created a bond that not many can understand. Something really special.
So in celebration of this beautiful human, who has a deep understanding of what it is to live selflessly with a deep understanding of human connection and love wholeheartedly, I am sharing the post below that I wrote back in 2012 on a blog we had for a little while during one of the toughest times of my health journey. It isn’t my best writing piece and it has taken all my self control not to edit it, but it tells the story of the relationship we have today and how truly amazing those that love ‘us’ living with chronic illness are. Those that choose chronic illness when they don’t have to.
One of my favourite images of Cameron and myself taken a couple of days after our wedding by the talented Belinda Fettke.
Sometimes it is hard to share what having CF actually looks like – it often isn’t pretty. Right now though, I am in hospital and I know some of our friends (especially the ones who didn’t grow up with me) wonder why Cam and I ‘disappear’ periodically. So here it is, a post about what goes on when I get unwell. This time I was lucky enough to get a hospital bed, but the process and the stress and the dedication of one incredible person in my life remain the same – how lucky am I to have that guy?!
As most relationships grow, there are tasks that partners take on that demonstrate the deepening dedication to their loved ones. For boys this is often marked by actions such as late night dashes to the supermarket for cookies and cream ice-cream (or tampons!), learning to use the vacuum cleaner, appreciating the value of ‘honey-do’ lists or developing coping strategies for ‘highly’ important ‘2 minute’ shoe shopping trips. They are things they don’t find enjoyable or that come naturally and generally just push the comfort zone, but the desire of our loved ones to still do them says to us they are willing to do what it takes to make the relationship work.
I may have mentioned here before once or twice that I have an Ahhh-Mayyyy-Zinggg man, and his ability to do things that are outside his comfort zone is pretty impressive. Not only has he learnt to cook healthy, nutritious food to keep us well, he has an excellent eye for dust and never complains at my shopping antics. On top of this, Cam has found yet another way to my heart – about 40 centimetres in to be exact. Something that isn’t just about love, but about life.
Part of having CF means regular intravenous antibiotics or what is known in the CF world as a ‘tune-up’ to treat chronic lung infection and keep us kicking. In my case the antibiotics are given through what is known as a PICC line – a small tube (freakily similar to the cable on Apple headphones) that is inserted into the vein in my arm and runs into one of the major vessels in my heart – for me it is about 40 centimetres long.
The Inserted PICC Line
In recent years I have required ‘tune-ups’ up to four times a year and they are mostly done over a period of 2-4 weeks, though some can be much longer. Ideally that takes place in a hospital however in recent times a severe shortage of hospital beds means the best (and often ONLY) way to administer my treatment is to do so at home.
To most people that sounds like a great trade-off, however home IV’s come with a whole new set of challenges. Sure I get to sleep in my own bed, eat better food and not deal with the germs, noise and general ickiness of hospital but in their place are considerations such as safety if something were to go wrong, the risk of infection and the crazy schedule IV antibiotics and home physio require on top of all my other daily treatments (In Queensland there is no home nursing or physio support). Enter ‘nurse’ Cam.
At the best of times having someone else caring for you requires a lot of trust. To say having someone that isn’t professionally trained, inject potentially toxic fluid directly into your heart requires trust, is well… laughable. It requires incredible amounts of trust… and faith… and knowledge that the person doing it only has your best interest in mind.
For me, there is nobody better suited to that role than Cameron. So whenever I need it, for the entire 2 to 4 weeks, he becomes my nurse, doctor, pharmacist, physiotherapist, dietician, cook and cleaner. From holding my hand while they insert my PICC line (they won’t let him do that one) and again while they take it out, he does both the early and late shifts and everything in-between. He measures noxious smelling drugs with precision and primes countless IV lines. He lovingly washes my hair over the sink and chauffeures me to and from the hospital for blood tests, lung function tests and appointments. He makes sure I take every one of my 30 – 40 daily pills and 6 – 10 insulin shots and cleans my nebulisers for each of my 4 – 8 inhalations. Who needs sleep anyway?
The boxes from a two week course of IV antibiotics
…. and the viles
And THIS many syringes
The most amazing thing of all however, isn’t that he does all of this now and then for a few weeks. It is that he chooses this life even though he knows there will be many more weeks like this to come. Although periods of IV’s are more challenging than our usual routine, this is part and parcel of being fiancé to a CF’er. Even on the good days there are pill boxes to make up, injections to remember and physio treatments to do. There are weekly appointments to attend and bad days to get through.
While many of our friends are graduating and building their careers or travelling the world, Cameron is by my side doing the things that aren’t always fun and that he will have to do all over again tomorrow, but mean there will be as many tomorrows as possible. To have someone who stands by and takes all that on board, I have to say makes him nothing short of incredible. Some might say it isn’t a real job, but Cameron assures me it is the most important job in the world.
For all these bottles
For young couples living with chronic illness it can put a huge strain on the relationship. There are so many things that fall outside each others comfort zones to come to terms with. It is nothing short of stressful, emotional, frustrating and at times, heartbreaking. But it also creates an amazing bond between one another. It requires the raw and unwavering dedication, selflessness and trust that would not otherwise exist, from these things grows an incredible love.
They say love is a drug… THAT is a whole lot of love!