Black Knights

Our lung function inevitably declines despite our absolute best efforts. Honestly? Sometimes this can be pretty hard to deal with.

Every clinic visit we do lung function tests (LFT’s) to map where things are up to. LFT’s are an objective measure that the doctors use to get a handle on our health. For the uninitiated: we take a massive breath in then blow the air out as fast and as long as we can through a tube attached to a machine. It measures how much air we can blow out in one second (FEV1) and how much air we can blow out in total (FVC). The machine calculates our percentage of lung function compared to what is normal for someone of the equivalent race, sex, height and age.

It seems to me that doctors put a lot of emphasis on our lung function. They do consider our story about where we think our health is at but an objective number is harder for them to sweep under the carpet or argue with. As a result, I often find myself becoming too focused on “The Number”. The Number seems to have power over my thoughts, moods and activities. Before clinic I spend time wondering what The Number will be, trying to guess based on my symptoms. It can ruin or make my day, my week, my month, my year. The Number can start or halt a snowball of talks and action plans to optimise health. A low number gives me something to blame if I can’t walk up those stairs, that hill or stay out late. A high number gives me confidence to shoot for the stars.

Sometimes my lung function dovetails with where I think my lungs are at and sometimes it surprises me – it’s higher or lower than I expect. Lately it’s been lower. I can no longer blow what I used to. I put in so much effort but the numbers just don’t go as high as they used to.

The last drop I had took me completely by surprise. The worst lung function I ever had came completely out of the blue. When those numbers popped up I couldn’t believe it. I thought there was something wrong with the machine but I had three tries and those numbers didn’t budge. The numbers weren’t playing tricks on me. It shook me up a little. I booked a holiday at the Hilton (ie: was admitted to hospital) and I clawed some back but not all of it. I’ve had time to mentally adjust and recalibrate what is a good percentage for me now. I’m focused on maintaining this level and living here as long as possible before the next drop.

What makes these drops so hard is that we put so much time and effort into staying alive and well. We commit to our health for a lifetime and yet we still decline. Brutal.

When my lung function takes a nose dive it feels a little like someone has kicked my legs out from under me. Sprawled on the floor I want to get up but it takes a hell of a lot of effort and every now and again I wonder for a micro second if I should even bother. But, I do bother. I absolutely love standing up for a while before my legs are kicked out from under me again. Each time it’s that little bit harder to get back up. Each time it takes more physical effort and will power.

It makes me think of a scene from Monty Python and The Holy Grail where King Arthur is fighting with the Black Knight. King Arthur lops the knight’s arm off but he is undeterred. The knight’s second arm comes off and he then proceeds to kick the King since he can’t lift a sword. Before we know it his legs are gone too but he’s still putting up a fight – verbally! Even as our lung function declines, even when it seems that we are steadily drifting up a creek without a paddle, PWCF are nothing if not stubborn, we have a strong fight. We are Black Knights.

It’s not just PWCF who need to muster physical and mental strength to fight a mammoth health battle. Lots of people fight chronic health battles everyday. Sometimes the fight is too great and there comes a time when people decide they’ve had enough and they lay down arms. But if it’s not that time, if people have fight left, they can act like the Black Knight and give it all they’ve got.

NB: as the video is from Monty Python there is swearing and fake arterial blood splatter. You know the deal and what these guys were like.


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