Isaac’s time in intensive care gave us a glimpse of how bad things can be; dependency on oxygen, wheelchairs, a complete and utter reliance on the healthcare system that wrapped itself around us. A profound insight in actual breathlessness, the impossibilities of walking, getting to a bathroom, to wash, to eat, to do anything normal that a lack of O2 entails.
Overcoming that exacerbation, getting home, getting back into life after a month in hospital... amidst all of that I never could have told you how stressed out I was. It’s only now, looking back, that I can see that I shook for months without really realising why (do stress hormones linger in your body that long?). Literally shook. And that was just me - what must Isaac be thinking?
Then adjusting to a new norm. Instead of hospital and IVs once or twice, max three times a year, now to six courses a year - two to three weeks at a time. That is a whole lot of life to live with a needle in your chest, maybe days per year, hooked up to a drip/pump to administer drugs directly into his blood stream, fighting a battle with a bacteria that he won’t really win (he is considered colonised with PseudoA, so the fight now is to keep it in check, rather than eradicate).
Not to mention two lots of surgery, one very painful and the other for a permenant IV device in his chest. This portacath was an addition that at first he was adamant he did not want. But he came around to slowly as his veins became shot and it became harder and harder each time to get a line in. A permenant reminder of disease. A marker that he never wanted, but that now we are so thankful for (makes intravenous access and a speedy IV kick off so much easier).
When Isaac is sick, there are clear obstacles to his everyday life. Six nebulisers a day takes up a lot of time. Add IVs to that, and he’s house bound for 2-3 hours more at least, he can’t swim or shower, and to bath he needs to be wrapped in cling-film. His exercise options are limited, sleep is difficult, not to mention that he can feel terrible. But I was thinking today about all the smaller, everyday things that being chronically ill with CF might mean;
When you cough that much, would you enter a small shop, a lift, a cinema for fear of those LOOKS? The jokes about giving up the twenty a day habit (so not funny)? People running for cover thinking you’re the contagious one? The fear of the dreaded cough-cough-vomit? Would you want to go out for a night in winter, when the cold air/hot air transitions make you cough more? Would you want to cook/eat out, when cough/treatment induced nausea might mean you can’t eat anyway? Would you want to join a gym, when exercise induces just more coughing? And you’re surrounded by peers that don’t have the invisible disadvantage of reduced lung function meaning you can’t ever keep up? Do you carry on accepting invites from friends and family, if you so often have to cancel last minute if you’re unwell? (Or worse, do they stop inviting you?) Would you apply for a job when you knew that it would mean not having the time/energy for all your treatments? Would you wish for that promotion if you knew you might be absent due to hospital stays more and more often in future? What about relationships, when your condition affects your fertility, your ability to travel, your being able to PLAN ANYTHING are all affected?
The list goes on, and OK, so I may have drifted off the ‘everyday’ theme there, but my point (that I meanderingly get to) is that on the most part, CF is an invisible disease, but it affects sufferers in a thousand different ways, a thousand times a day. I hope by raising awareness here I can increase mindful consideration of life with this and other chronic disease.
To support our fundraising for the Cystic Fibrosis Trust who fund seriously groundbreaking research, please click here. CF is actually one of the areas of medicine where a cure is a realistic idea, but they lack the funding to achieve this potential. As such, myself and a bunch of my amazing friends will walking the Great Strides walk in the Surrey Hills in June 19. For me, a bonkers 67km in a single day 😬 x
Gorgeousness from Hilma af Klint.
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