Contemplating the Chronic in Chronic Illness

I’ve written this in two halves, so at this point, I’ve had a stable five months of health, one blip over the last couple of days so I organised to see the physio. Off I go along to JR, ready to bitch about how and why I’m so different from other people my age but as I sat down in the waiting room, I saw another CF patient who I got to know quite well whilst on the ward last year. She is one of the kindest souls I’ve ever come across and has just been dealt a really shit hand. When I knew her last year, she wasn’t able to benefit from Kaftrio due to her genetics, so she wasn’t the healthiest of people but was managing well. I walked into the waiting room and immediately recognised her classic CF figure and I could feel a smile stretch across my face but then I glanced down and saw a tube resting on her arm, at which point I saw it was tethered to an oxygen tank and I could feel the smile fade from my face as I came to realise what this meant. She said she had got a really bad infection at Christmas and just hadn’t managed to come off the oxygen, she had also been on near constant IV antibiotics since which often means the prognosis is not good; however, despite this, as with many people with a chronic illness, she was still laughing and remaining positive and supporting me with my blip despite hers being so much more serious.

Needless to say, it’s difficult to see people whom you’ve built a relationship with suffer but especially when the entire bond is based on your shared experiences, not only for their sake but for the stark reminder that inevitably things can and do change for the worse.

By definition, chronic means long term / constantly recurring / incurable. Ever since I was about four years old, I knew that CF was with me for life but only when I was about 12, did I accidentally become aware of the fact that it was a life-threatening thing. It wasn’t exactly common knowledge but a few people outside of my friends knew I had CF so when I had won all of my races on sports day in year 7/8, one boy came to me afterwards and started asking about CF and how it affects my lungs as he just couldn’t believe that I had this but was possibly the fittest girl in the year. I hadn’t really dealt with ill-health at this age so was rather ignorant to how utterly cruel my own condition could be and therefore wasn’t able to educate him on an in-depth or accurate level. Anyway, so I filled this boy in on (my understanding of) CF and a few days later he came back to me and told me he’d researched it (which was a very kind thing to do) but then he said “did you know your life expectancy is only 35” and I was like “huh ???”. Now as I said earlier, I had no idea that CF was fatal so that was pretty difficult to process.

(I would like to disclose that the revised life expectancy for women with CF is now 43 I think).

In the more recent years, I don’t feel like I’ve had to wrestle with it much. I have extensional crises about dying when I’m coughing lots of blood or when breathing feels like I’m drowning but other than that, the life expectancy part doesn’t tend to get to me. It’s often one of my go-to jokes to break the tension or to get a laugh.

However, saying that, I’ve been having a lot of severe, transplant territory type of CF accounts pop up on my Instagram and all these people are tethered to oxygen tanks, extremely malnourished, in and out of ICU and although I’ve seen this stuff in the past, it’s making me seriously consider what the coming years are going to look like for me. In my desperate attempts at retaining all control over my life, I’ve already decided that I don’t want children, due to numerous reasons but the biggest is that I don’t want to risk putting that kind of pressure on my body and then potentially becoming too unwell to look after them. I’d take healthy longevity over offspring any day.

I was getting upset to my mum the other day as I just don’t understand how I could’ve gone from the best two years of Kaftrio to now, when I’m having to work a lot harder to breath and do all the normal things and having to live life SO differently to all of my friends. We're still not quite understanding why my lungs now do what they do now and why X, Y and Z don’t seem to be working quite right or certainly not as well as they used to. I’ve talked about it a lot recently, but my mum said along the lines of, we haven’t dealt with your lungs at 23, it’s just a new stage we have to navigate. And then it later occurred to me that my CF has seemed to progress in these stages as I’ve grown older and unfortunately with a degenerative condition, age tends to mean deterioration.

I’m trying to find a nice way to round this blog off but I don't think I've "unlocked" that level of my life where I can impart wisdom or perspective on this topic, a

part from the fact that life is short and fragile and precious, but you can’t let that essence of existentialism stop you from getting back on the horse, obviously after a couple of days of tears and tantrums but it’s the classic “just keep swimming”.