The on-going saga of my faulty lungs

Soon I have the first (of what will likely be many) appointment with my lung specialist, and since I started this story a while ago I figured I’d best write up the next instalment, as there will certainly be more to come.

Re-reading part one of this saga, I realised that I didn’t really explain my symptoms very well, which I will do before I start: they can be summed up as “wheezing”. It happens when I run fast or uphill, or both, or encounter some other stressful thing during the course of a run – jumping into cold water, having to do strenuous things like burpees or dog avoidance (they love me), and sometimes during other random moments that may or may not form a pattern (I am yet to deduce). It’s a weird kind of wheezing, as it happens on the out-breath. I can push on through it, but after a while liquid (I will go all science-y on yo’ ass and say “mucus”) builds up in my chest and I have to stop and cough. Sometimes I am one of those people and also have to hack up and spit on the floor. I suspect that were I not to cough I would drown, as I would just end up breathing in fluid and choke.

Moving swiftly onwards (much as I like talking about bodily fluids), you may recall that I left you with this image – the results of my spirometry tests – a sheet full of numbers and TLA’s (three letter acronyms – my favourite of all the TLA’s). When I walked out the doctors I immediately set about googling them – buggered as I was to sit around waiting for the lumbering old NHS to fill me in – and found out quite a bit…

spirometry-crop

The most important bits of data, circled in red above (along with my lung age – an impressive 58 years old – a stellar effort by my 36 year old body if I do say so myself) is the FEV1/FVC ratio. In English, this is the percentage of the air from your lungs after a maximal inhalation (very deep breath) that one is able to expel in the first second of a hard exhalation.  Mine is 69. The middle figure in the columns to the right – 82 – indicate what it should be of a woman of my age and my height. Hmm…

Further googling revealed that a FEV1/FVC ratio of under 70% indicates COPD – Chronic Obstructive Pulmonary Disease – which is the umbrella term for a range of obstructive and restrictive lung conditions, including chronic bronchitis, emphysema and chronic obstructive airways disease (it is these last two that are relevant to me, as I don’t suffer from a cough).

From WebMD: “Over many years, the inflammation leads to permanent changes in the lung. The walls of the airways thicken and more mucus is produced. Damage to the delicate walls of the air sacs in the lungs causes emphysema and the lungs lose their normal elasticity. The smaller airways also become scarred and narrowed. These changes cause the symptoms of breathlessness, cough and phlegm associated with COPD.”

So before I’d even spoken to my doctor, I had pretty much mostly figured it out. There wasn’t much doubt in my mind because I couldn’t see anything else it could be, plus things just “fitted”. My diagnosis was confirmed a few weeks later, along with a twist – given that I’m not a smoker (I used to be, but never what the doctor deemed as heavy and I quit a long time ago), nor do I work in a coal mine, a chemical factory nor spend my evenings inhaling what comes out of that dodgy looking banger down the street – the reason for this condition is, let’s say, unusual. I shall reveal more in the next post – I always think it’s good to keep my readers sucked in with exciting hooks!

Copd

I like to break up my posts with pictures, especially posts that go on and on, and thought I would choose a clear technical image instead of a silly one. You can see the breakdown in the membranes which causes air to get “trapped” in the alveoli, causing the difficulty breathing, and the restriction in the airways causing the mucus. Mmm, mucus…

Anyhow, it’s given me a lot to think about, both in terms of reflecting on why my running and cardio training has been like it has, and also what the future will hold. Since I’m struggling to find any structure or point to this post (apart from it being a convenient way to inform the people I care about, and vice versa, about the situation) I hope you will forgive me for musing on them for a bit…

I’m not as lame as I thought
I’m quite hard on myself. Not in a mean way but (at least I like to think) in a firm way. The words I have with myself that keep me on track and stop me from dicking around, are an important part of my training (and life), and I often use them when I know I’m being lame. This could be anything from being lazy and not finishing a set properly to being lazy and not running hard enough to being lazy and not being bothered to do some work that needs to get done.

But I’ve always struggled to reconcile the fact that I do push myself in my running and still don’t seem to get significantly fitter. Now I know why. I always thought perhaps I was just doing it wrong – that I was blindly reading all this stuff; decades of combined wisdom about running – and somehow fucking it up. But no. Phew. Kind of.

Normal training wisdom doesn’t apply
One of the most effective ways to train for cardio, especially in running and cycling, is using heart rate “zones”. You find your max heart rate and then identify your easy, moderate and hard zones and do various workouts based on hitting/going in and out of these zones. Last year I bought a very cool and somewhat expensive sports watch, and embarked on this style of training. And you know what? It made sweet FA difference to anything! Again it was something I thought I was doing wrong, but no. Yay. Ish.  

My hatred of the cold
I’ve never been good with cold – I have Raynaud’s Syndrome which tends to see my extremities go white, even when the weather seems mild, and do not fare well when my body gets cold (I was sent home from work at Chelsea Flower Show three weeks ago, in the middle of May, because my lips went blue). But I also attributed my hatred of icy climes to a bad attitude – a lazy internal thermostat and a love of roaring fires. Like a cat. I realise now that part of the response to someone with COPD to extreme cold is a further restriction of the airways, so when I jump into cold water at an obstacle race, not only do I feel like I might die for a few seconds, but my body actually responds in a way that, if it continued, I probably would. I’m trying not to use the COPD as an excuse for lameness, but the past few OCR’s I’ve done I’ve actually skipped out the water obstacles, as now I have a medical reason to avoid them I’m damned if I’m going to put myself through the trauma!

The reason for the crushing self-consciousness
I have been, and still am, despite a diagnosis, incredibly self-conscious when I run with other people. My modes are: run very slowly, can chat; run moderately, monosyllabic answers; run hard, wheeze and “speak to me and I’ll give you an evil look and not answer”. The things that get me wheezing are not necessarily the same things that other people would find strenuous. Quite often they are fairly insignificant slopes or just a small increase in pace, but before I know it I sound like an old nag being driven along with a stick. This has generally left me worrying that other people would think that I was a secret smoker, or that I was blagging this whole running thing and never actually did any training, or that I was about to keel over and they’d be the one having to call an ambulance.

No stress running
One of my main goals when running, especially trails which are more unpredictable, is to ensure I have enough energy (i.e. oxygen) in reserve to deal with stressful circumstances. For most people encountering something that whacks your heart rate up even further wouldn’t be so bad, but for me I find it almost debilitating as often it sends me flying up into my wheezing zone and I either have to stop or go verrrrrry slowly to recover.  I’m always very careful with my footing and to to avoid unpredictable situations – things I could fall over, animals under my feet and so on. A few weeks ago I was doing the hardest part of all my training – 10 x Primrose Hill runs – and a small child started running around my feet. My first instinct, which I acted upon, so intent was I on maintaining the steady breathing which is the only thing that gets me through it, was to put my hands on their shoulders and firmly guide (/place/push) them to one side. As I battled onwards I realised that the parents, had they seen, would probably think I was a cold-hearted, self-centred fitness obsessive (only one of those is true), but the energy required to spend even five seconds of navigating a two and a half foot human at my ankles would’ve been too much.

There’s only an “I” in my team
Related to the two previous paragraphs, I’m not great at running with other people. I worry that I’m holding them up or feel self-conscious about my breathing, which stresses me out. I also really despise running two-abreast. I’m not sure whether this is because I find it distracting – like that they might be expecting a nice little chat and a relaxed pootle around the park – or whether it’s just because I’m a self-centred A-hole. But either way, there are two places that other people I’m running with can be: way head of me (so I can see at least five clear metres of trail at my feet) or (ideally) way behind me so I’m not even conscious of what they’re doing. I do like running as part of a group, especially on long runs, but at the end of the day I will always be running my own run, with the presence of others being almost incidental. I am aware that this is pretty weird, but since a lot of my runner friends are likely to read this, I feel I should be honest about this issue now ;)

I’ve been asked a lot how I feel now that I have the diagnosis and what my thoughts are regarding the future, which is a hard question to answer (and you can probably figure out from the format of this post that it is something I’ve been thinking about a lot).

I don’t regret the decisions I’ve made in life, and I have made some stupid ones – things that have caused me (and others) immeasurable pain and heartbreak, as well as ones that had I not made I may not have found myself in the position I am now (or at least not for another x number of years). But you know what? Everything I’ve done in my life has got me to where I am now, which is a place I’m very happy with. Mostly, I’ve had a great time, and those hours spent smoking weed and playing Goldeneye at uni were some of the best of my life, as were the times I’ve spent sat outside a pub with a pint of beer and a cheeky fag on a hot day. I’m not going to beat myself up about them, not least because for a normal person they wouldn’t have caused much of a problem (more on that abnormality in the next post), but also because I was an adult then and those are the choices I made, and I am not going to deny my responsibility for them.

There are only two things that make me sad about this situation, and that I have had to mourn the loss of.

The first, and most significant, is not being able to achieve my full potential in running. I know that if I was able to breathe well enough to get enough oxygen into my muscles that they would be able to power me to great things, especially at shorter distances when demands on the cardiovascular system are the greatest and I struggle the hardest.

On the up-side, this does mean I can embrace my strength training as much as ever. I will always be running, or doing some other form of fun cardio (it is one of the few variables that I can control that will keep this degenerative and incurable disease at bay), but I’m not sure if my 20 minute / 5km will ever become a reality, nor that I will ever be a truly competitive force in OCR.

The other thing that hasn’t been comfortable is having to break something I have a very strong belief in: never saying “never”. I strongly believe that unequivocally ruling something out of your life is a bad thing – those who say “I’ll never touch another drop ever again” or “I’m not going to eat cake for the next year” are invariably the ones who fall from the wagon first, smashing their misguided faces onto the wheel on the way down. I see it that keeping my options open for some indeterminate time in the future is a lot easier to deal with so if there’s something I need to cut down on I make a deal with myself to cut back on it, the reward for which being that I can occasionally indulge should the desire strike. One example of this has been smoking. Now I very, very rarely smoke, but once or twice a year I’ll be at a party and fancy a cigarette, and I’ll have one. With a nice drink and a nice chat with some friends outside. It never makes me miss smoking or want to start, nor do I wake up the next morning feeling terrible (or full of self-loathing); I just enjoy the experience whilst it lasts. This is the same for smoking weed. I’ve not smoked regularly for long time, but I would never rule it out for the same reasons. 

But now I find myself in the odd situation of actually having to say never.

I can never smoke again.

And that kind of sucks.

What also sucks is the recurring dreams I’ve been having since the diagnosis in which I’m smoking.

That said, if I’m still around at 85 and have fulfilled my life’s goal of owning an house in Mississippi with a veranda and a rocking chair, I may well accompany my dying days and large glass of gin with a big fat joint.

;)

PART THREE

old-lady-smoking-cigar

 

 

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1 Response

  1. sarah says:

    Hi Fi,

    I loved your blog. I was just diagnosed as an SZ Alpha one year ago and have exactly the same thoughts about smoking as you. I have not ‘properly smoked for years but’, like you, I enjoy one every now and again and have also found it a bizarre to try and come to terms with the fact that this will be a ‘never again’ for me. If I get to 80 though, I may join you with a smoke :) (I’m 38 so it’s a way off!).

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