The Elixir of Life – Concentrated

The Elixir of Life – Concentrated

elixir_of_lifeIt’s my desire and ambition to be as real as I can be as I write about my experience in this blog. This means that sometimes, it ain’t gonna be pretty!  But then, chronic illness, pain, surgery, hospitals, wounds: none of it is especially pretty. Sometimes people only want to hear the inspiring and positive stuff, the success stories against an invisible foe, fought out on the battleground of your own body. But, there is no good without the bad, no day without night, no yin without the yang ( …you get it, I know!) There are victories to be had in this silent war, both mental and physical, when I feel I am winning and that my inner troops are strong, armed and ready. But I wonder perhaps if really, there is no winning and no losing. It’s just all a process (I am loathe to use the word, ‘journey’ lest my own eyes roll) where some days feel good and some days, not so much. With chronic diseases which also deteriorate over time (there he is again, my old nemesis Time), the good days seem to get fewer, the “not so much” days, become more frequent and in turn become the good days.  And then you really begin to learn what rubbish days look like. This seems like a good time to stop judging days.

Today is just one of those “not so much” days. Actually, the last few days have been a bit rubbish, both physically and mentally. On such days I try and give myself a break from sucking that old marrow too hard. I may try and lick a little if I can or imagine what a lot of marrow sucking I will do in the future. Mostly I try my best to allow things just to be, to ride the waves of uncertainty that my situation brings and patiently wait for the storms to pass. If I can, I try to avoid g20180523_141016etting trapped in the predictable whirlpools created by fear and depression. I may sit outside to be closer to trees, suck in the fresh air, stare at the clouds and the sky and actively listen to birdsong which I find immediately soothing. Many of my past travel adventures have featured as a key objective going in search of wildlife and nature’s splendour. Now, tottering about in my local urban park, witnessing the changing of the seasons, sitting surrounded by squirrels and listening to the birds brings a sense of escape and relief. For me, Nature is one of life’s great elixirs. Yet these days, to taste this requires much more effort as life’s most vital elixir, oxygen is no longer so readily available to me.

 

It was not my intention to introduce lung disease at the start of my blogging life, but it is the part of my general condition which causes me most difficulty on a day-to-day basis and is exceptionally limiting both in terms of mobility and I am afraid to say also, mortality. I have spent so long trying to hide it – from myself mostly. I hate this disease and I am ashamed of it (for what reason I am not sure). Denial has been a recipe for survival but one that has now ceased to be useful.

Technically, I have Chronic Obstructive Pulmonary Disease or COPD – an umbrella term for a number of different lung diseases and it normally affects much older folk than I. (I recently heard of a fellow sufferer who gives a more meaningful explanation of the acronym: Can Only Plan Daily. Need I say more?) COPD is a truly appalling disease. It’s like having a fist squeezing the top of your windpipe while you suck in air through a straw or having an extremely heavy animal sitting on your chest! On a bad day when I am struggling to find any breath, it is as if I am stuck inside the crater of a volcano searching for a way to escape, gasping at any traces of oxygen remaining amongst the unimaginable heat, rocks, magma and noxious gases. Even on a “not so much” day It renders me extremely breathless at the drop of a hat (literally, on some days – oh, like today, actually – I would barely be able to scoop my hat off the pavement, even if I were to venture onto the pavement at all on such a day). It forces me to take a well-deserved rest two-thirds of the way up the stairs in my own home, providing a welcome opportunity to look through the rear window at the trees and plants in the back gardens (and a little twitch through the blind at the neighbour’s place to see how they are progressing with their renovations – blimey, get ON with it).

My lung function is now at about 17% of the predicted function it should be for a man of my age and (diminutive but beautiful) height.  Why it has taken hold and progressed with such ferocity in my case is, like many aspects of this brutal disease, unknown. But in all likelihood, it is because it is just one of my “co-morbidities” – a term helpfully used in medicine to refer to the collection of life altering (and threatening) diseases someone has in addition to the one you may be talking about at the time. (It’s a jolly term, isn’t it? Gives me a warm sense of unity and harmony – I feel relieved that my original solo-morbidity is not so alone but instead has companions to depend on and feed off and keep it from the deep, dank wells of loneliness.) This original lonesome morbidity, the one I was born with, is another mouthful: Chronic Granulomatous Disease or CGD for short, the real underlying demon here. Insidious and underhand, this genetically inherited immune disease causes my bone marrow to produce faulty white cells, making them shoot blanks when it comes to fighting infections. Affecting 1 in 250,000 people, it is potentially lethal and its effects are variable, unpredictable and generally just nasty. It is the cause of most of my issues in one way or another. It is the serious and chronic inflammation inevitably caused as part of this gift from the universe to me of this gorgeous and extremely rare primary immune deficiency that is the likely explanation for the fast deterioration of my lung function in recent times.

Last Friday, following a batch of recent tests, I was advised that my lungs could no longer find the oxygen they need in nature – at least while walking. I would need a new elixir, oxygen concentrated from the air by a machine. So now, as a fashionable addition to my little-man-about-town look, whenever I am walking along the street the public at large has the privilege of seeing me with a tube of plastic hooked behind my ears and down across my cheeks to meet in two cute little nasal prongs which sit in my nostrils (and make grooves in my cheeks) giving me supplementary oxygen as I go. The oxygen comes from a portable machine which concentrates the oxygen from the air around us and sends it down through the tubes into my nose. I am sure people will not even notice. I don’t ever remember seeing anyone on oxygen in the street or out and about at the theatre or a concert or anything, so maybe I just didn’t even notice them myself. Or if people do notice, I am sure they will absolutely not be looking at me or at my nasal cannula (or awkwardly not looking) and thinking, “Oh my God – I wonder why that bloke has got a plastic tube up his nose” or “what’s the matter with him? He seems too young to be on oxygen” or worst of all, feeling sorry for me.

I have taken it out for a spin (it comes with its own little trolley) – and it wasn’t as bad as I thought it would be and I even towed it up a hill with a friend and her pooch.

IMG_20180604_124730_534I am determined that in spite of it all, I will go to the concert at the Barbican tonight, with my concentrator on its trolley. At least (and I alone can start a sentence like this when talking about my own misfortunes) – at least I will now not need to worry about having to justify to people why I am using the disabled loos. I have moved from the murky realms of invisible disability to disability. At least sometimes. And I can use my portable oxygen concentrator, weighing 4kgs or so, as a portable ersatz dumbbell and do a few bicep curls while on the go. See? Not so bad after all. That’s what I call making the most of it. What is it they say? Every silver lining has a cloud?

For more information about my life with CGD and my early Bone Marrow Transplant take a look here:

 

 

7 Replies to “The Elixir of Life – Concentrated”

  1. You write beautifully about life Simon, and though your visceral may be aged, your wisdom is far beyond your years too. That rose photo is a classic!

  2. I’ve known you for well over a decade and in my experience, you’ve never had any particular problems expelling tumultuous amounts of hot air, most of it wasted on me, so the limiting of the “in” function might at least let me get a word in every now and then…………………..but I doubt it?

    You’d have thought, with advances in technology, they’d have designed a more discreet method of providing you with the oxygen you need? A couple of inserts to the ears perhaps, hidden behind the arms of a fashionable pair of sunglasses? I’d be happy to take the idea forward, if it appeals?

  3. I love that you’re less judgmental on your days and now just letting them be, I think I’m going to try this a little more.
    And whilst I’m mostly disability free, I’m just going to have to keep using the invisible disability option whilst using disabled loos ;-)) loving you and your work Simon you very special man xxx

    1. Thank you Rob. You have always been so complimentary to me and made me feel good about myself. I really appreciate it and hope to see you again soon…

  4. Beautifully written and I’m so glad you’re doing this. Not just for you but for everyone that cares about you and people struggling themselves that can draw inspiration from it and you.

    Your attitude and positivity never ceases to amaze and inspire me. I truly feel honoured to know you and look forward to the really nasty posts about bodily fluids and wounds!

    1. You are such a lovely man, Paul. Thank you. I have some cracking pics of wounds and stuff but will spare the general public these and send them only as a private message!

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