CategoriesHealthThought of The Day

The Good Thing About Suspected Heart-Attacks 

Although my robust heart has seen me through a lifetime of sport, including two marathons, this last six months she has become increasingly unruly. In the week that my umpteenth ECG revealed some minor niggles, she decided to run amok. Occasional, manageable chest pains; failing to pump faster when walking; then running wild when she shouldn’t be. When your heart misbehaves, it’s hard to think of anything else.

One Sunday evening, several weeks ago, she reached a crescendo of petulance: sharp pains into my shoulder; breathlessness; rapid beats, when lying down; and sweating. According to the 111 website, I should summon an ambulance immediately. Nah, it wasn’t that serious, I thought, so I called 111 for a second opinion, going through their more detailed questions. Ambulance en route!

Paramedics arrived promptly, performing another ECG: they were unconcerned by the results, even though my heart was running at double its normal speed, yet within a range that they deemed acceptable. Understandably, they were unaware of dysautonomia, but I cannot fault them. On the contrary, I am grateful and full of admiration for their professionalism, humour and dedication. The work of the angels, every paramedic should – at the very least – receive an MBE. Their very existence is a comfort.

Lying in bed awaiting an ambulance – which someone else regarded as potentially life-threatening – I decided to text my brother with my wishes, in the unlikely event that this was The End. Calm, I tapped away. Not so calm, my brother opened his messages: sorry, bro.

You’ll forgive me for not detailing my wishes, however, what I want you to know is that I did not have any deathbed regrets. Unlike clichéd regrets in such circumstances, I did not wish that I had tried harder at school, nor spent less time at work. I was – and remain – grateful for my lot. I demanded that everyone moved on quickly, with my wife encouraged to start the quest (should this be what she wants to do) for my replacement, commencing at the wake.

My tip, therefore, is to imagine such a situation for you. If there’s regrets in that list, fix it with utmost haste. I’m grateful for the clarity which this scary situation gifted to me.

(More thorough heart examinations have given it a near-perfect bill of health: it’s the autonomic nervous system which continues to fire inconsistent, erratic messages to my heart as well as all my other organs, causing havoc.)

CategoriesHealthThought of The Day

Tears For Fears

Men like me don’t cry: we aren’t supposed to cry. But we do. I do. I have, and I will.

Four times in the last week I have been moved to tears.

When my blood tests came back to indicate that I might well have Addison’s Disease, then I cried. Not so much about the impending doom which Addison’s may bring, but more for the reduced life expectancy. (Forthcoming blood tests will confirm – or not – the Addison’s; either way, my cortisol levels are far too low, with my body attacking itself).

Telling my son that we couldn’t go on holiday as a family unit, I squeezed him so hard, with tears rolling down my face. He didn’t see them, I think. They are now away, having a wonderful time.

Then I received a letter – yes, a letter! – from a friend. Previously she had emailed, receiving my out of office reply. Undeterred, she then copied and pasted the email into a letter, posting it, of course. What a palaver! Her efforts moved me to tears. Unlike the email, I shall keep the letter forever.

The fourth occasion is almost too embarrassing even for me to admit to, but given that I have become overly “sharey”, I shall confess. Watching A Place In The Sun, an adorable new couple from Halifax – soon to retire – found their dream home in Spain. He had just survived lung cancer; she had worked all her life, raising a family, too. It made my day. They were chuffed to bits.

Happily, though most of my plans and hobbies are now on the likely back-burner of perpetuity, I have never been more excited. A new world has opened-up, a creative world. Two novels to finish writing; drawing to learn (not knitting, as someone has suggested!); nature to investigate; blog-writing to perfect; photos to take; lyrics to conjure; Yorkshire to explore. And as this metamorphosis develops, there will be tears to cry, because that’s what we creatives are supposed to do.

CategoriesHealthEssaysThought of The DayBusiness

Surely, we can do better than this, right?

Wired-up to a portable ECG monitor whilst I type, I feel like a hybrid human-cyborg. Doubtless this state-of-the art gizmo is cleverly reading all the electrical signals going to my heart, but the contraption’s poor wearability contrasts sharply against the brilliance of the tech. When my heart plays up – or, when I think that it does – I press the green button on a small, dangling pad. The pad is the end point for all the wires criss-crossing my torso. The pad will attach to a belt in such an ungainly manner, wires hanging everywhere. Even more cackhandedly, the pad might just squeeze into a pocket, with the wires protruding as if I’m wearing some form of suicide vest.

Design-wise, clearly what would be optimal is if the pad could be strapped to the body – somehow – because when, say, one needs the bathroom, down goes the trousers, which in turn yanks the pad downwards, straining the wires stuck to my chest. What a palaver! Should the wires become disconnected from the pad, the ECG test fails, to be repeated next week, probably. Showering or bathing is out of the question, which again is a preventable inconvenience. If the pad attached to my chest, then I could then wash waist-down, but no.

Not in the least do I feel put out by this minor imposition, which will only last 36 hours or so, but what has fired me up is that the solution to the dangling pad is so very simple. Over the years hundreds of thousands of people will have gone through this process, but nobody has yet thought to improve its user experience. Why is this? Is it because the user – i.e. me, the patient – doesn’t purchase these things, rather it is the medical practice which does?

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Famously, from its seemingly impregnable position as the leading player in video rental back in the 1990s, through foolishness, Blockbuster didn’t become Netflix. When Blockbuster’s CEO recommended to the board that they moved into streaming services, the Board poo-pooed the idea, stating that they made too much money from late returns – returns which wouldn’t happen with a streaming service. Goodbye Blockbuster Video!

Similarly, due to inertia throughout all car manufacturers, a start-up electric car company, founded by someone who knew nothing about cars or manufacturing products, became the most valuable company in the world: Tesla. The other car manufacturers continue to play catch-up. Thank goodness for Elon Musk.

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Speaking to a senior paramedic recently, I asked him – just how invaluable did he and his colleagues find the health apps stored on smart phones, available to emergency workers? He had no idea what I was on about, so I showed him what I meant. (If you don’t know, your smartphone should allow you to record some basic health information about yourself, ideal if you’re unconscious and someone needs to know why that might be.)

Of all the thousands of paramedics, most will have smartphones. Of these, many will be aware of the healthcare app functionality and, I imagine, a fair percentage of these will have updated their own information. Despite this, it has not become standard operating procedure for paramedics (and police, we think) to access such information. Why has this happened? It seems so obvious to an outsider. Does the culture of ambulance services stymie positive change?

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Since Facebook became omnipresent, most users realise that they are the product; that data is a new currency. The more in-depth a platform knows its users, the better it can allow third parties to sell to their users. Mass data is powerful.

Though the internet is readily available in the West, I am only aware of Stuff That Works as a means of collating vast amounts of data on health conditions and using AI to link various conditions, for the benefit of all humans. This is a new entity, set-up by a lady whose daughter had a chronic health condition. Spending hours scouring the internet for tips, with a background in tech – having helped found the awesome app, Waze – she created this tool which I predict will revolutionise medicine. Watch this space.

But why did the NHS, or a similar organisation somewhere in the world, not create this? Why has an outsider – a non-medic, like with what Elon Musk did with electric cars – create this game-changing health tech, rather than an insider?

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Three interconnecting theories spring to mind.

First, as Tony Blair talked about in his famous 1999 speech to the Labour Party Conference – The Forces of conservatism speech – he outlined that in all elements of society, including within the Labour Party itself, forces of conservativism hold back progress. Many people don’t like change, goes the argument, blocking improvements in all sorts of organisations – be they public sector, private or third sector. Conservatism, with a small “c”, delays human development.

Blair said:

“And it is us, the new radicals, the Labour Party modernised, that must undertake this historic mission. To liberate Britain from the old class divisions, old structures, old prejudices, old ways of working and of doing things, that will not do in this world of change.

To be the progressive force that defeats the forces of conservatism.

For the 21st century will not be about the battle between capitalism and socialism but between the forces of progress and the forces of conservatism.

They are what hold our nation back. Not just in the Conservative Party but within us, within our nation.” My underlining.

Blair was right.

Second, as David Epstein argues in Range, often the most successful people in a given field, hadn’t specialised in that field early on in their careers. Citing numerous, compelling examples, Epstein posits that the generalist is more likely to make a breakthrough in a field than someone who has been working in that field for far longer. He says that generalists deploy orthogonal thinking to solve problems, drawing on their wider knowledge of often unrelated areas.

Third, in the case of the ECG machine’s dangling pad, capitalism isn’t at work here in the traditional sense, as the user isn’t directly parting with their money. Had Amazon reviews been an option, the minor adjustments needed for the ECG would have been made long ago.

Well, that’s my take on matters.

CategoriesHealthHarrogateThought of The Day

A New Vocation

This chronic illness lark is like having a new job. So many appointments to attend. So many biological readings to document. So much research to undertake:   a never-ending, insurmountable amount of research to perform. So many Facebook groups to scour for information, lending support to others when I can.

So many medical experts to juggle. So many letters – yes, letters! – to write. So much evidence to archive. New tablets to collect, to ingest and then the impact thereof, if any, to document. All the while, my I-watch tells me how little movement I have done, how few steps. And food – did I eat the right stuff and at the right times? And is there an alternative medic – a witch doctor will do! – with the silver bullet, just waiting for me locate?

I could do with a break from this job. It’s knackering – and then there is the illness to contend with, and my obligations unperformed.

Of course, my chances of recovery are far higher than for any person in preceding centuries, but I do wonder whether all these burdensome, self-centred tasks are in some ways detrimental to a recovery. In years gone by, perhaps some people in my position would go to Harrogate to “take the water” just as Karl Marx did with his daughter, Eleanor, in November 1873, staying for three weeks. I’m already here!

CategoriesHealthThought of The Day

Get Well Soon?

Chronic conditions are the hardest to treat – as the prophetical Seth Godin just blogged here – simply because we don’t pay them sufficient energy. This is not just true of medicine but for all realms. Covid’s acuteness trumps the existential chronic-ness of climate change. Chances are, we will die from a chronic condition, rather than an acute one.

 

Suffering from a chronic health condition requires the patient to become their own advocate; their own post-doctoral research fellow, too. Few people have the skills, time and money to do that effectively. Oh, and luck – you need vast amounts of that, too, should you want to make any progress. And the bloody mindedness to challenge and push the medics.

 

If we were to start from scratch and ask ourselves – how should we provide healthcare in 2021 and, of course, how should we provide pre-healthcare, so that fewer require acute interventions? – then we would not design what we have. “Time to return to the drawing board” would be apt, had the drawing board ever been used in this case. Time to buy one.

 

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I have the YouTube algorithm to thank for recently introducing me to British philosopher, Alan Watts. Long since dead, Watts studied the Eastern traditions, leaving numerous voice recordings of his musings. This one moved me. In it, he tells the story of a Chinese farmer.

 

Elegantly, Watts says:

 

“Once upon a time there was a Chinese farmer whose horse ran away. That evening, all of his neighbours came around to commiserate. They said, “We are so sorry to hear your horse has run away. This is most unfortunate.” The farmer said, “Maybe.” The next day the horse came back bringing seven wild horses with it, and in the evening everybody came back and said, “Oh, isn’t that lucky. What a great turn of events. You now have eight horses!” The farmer again said, “Maybe.

 

The following day his son tried to break one of the horses, and while riding it, he was thrown and broke his leg. The neighbours then said, “Oh dear, that’s too bad,” and the farmer responded, “Maybe.” The next day the conscription officers came around to conscript people into the army, and they rejected his son because he had a broken leg. Again, all the neighbours came around and said, “Isn’t that great!” Again, he said, “Maybe.”

 

Wise farmer. Wise Watts.

 

Being ill, perhaps permanently so, is – I tell myself – a “maybe”: neither good nor bad. Contained in that simple logic there is immense hope.

 

Watts’ story reminded me of the key learning point in the harrowing Man’s Search For Meaning by Victor Frankel. Holocaust survivor and psychotherapist, contemporary of Freud, Frankel explained that man needs purpose in order to survive any horror – well, to psychologically survive at any rate. After all he endured, Frankel would know. My hope is undiminished; more possibilities have opened up in my mind.

 

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This week, my awesome Quaker friends delivered a signed Get Well Soon card, of sorts. Well, our Quaker version of the Get Well Soon card. In it, the card reads: “Thinking of you all during this time of change.” Gorgeously put: thanks everyone! A “maybe”.

 

Purchased from the Woodlands Trust, (as of course a Quaker card would be), the front cover depicts an enchanting path, leading through some woodlands in the summer: a journey has commenced. It’s as if my friends knew what I was thinking this week.

 

CategoriesHealth

Diagnosis: Dysautonomia

(This is written primarily for my kids, and for me)

Dysautonomia is my diagnosis. I hadn’t heard of it, either. Essentially, it’s a syndrome – a collection of symptoms with a probable root cause – rather than a specific diagnosis. But this is what the specialist GP declared after yet another chunk of time off work. It’s a badge, a label, not one I want to wear and perhaps a blue badge will follow in due course. Only time will tell. Since that fateful appointment, I think about this word – all, the, time.

After years of crumby health, leading to acute prostatitis/sepsis in March 2018 with an admission to hospital and a drip to smash the infection, my health has never fully returned. Since that hospital stay, always after doing too much, I predictably crash, leading to a few weeks away from home-life and work-life. That infection destroyed my thyroid – for life! – and still my irksome prostate issues continue.

This time, my fall-off-a-cliff crash, following a hectic time in late April 2021, is different. The crash deeper; the recovery stuck.

Ten days ago, my GP, who specialises in chronic health concerns, definitively gave me this diagnosis. At first, I was grateful that I didn’t have ME/Chronic Fatigue Syndrome. Expertly, the GP gave me a number of websites and videos to watch about this syndrome, requesting that we meet again soon. Digesting the recommended materials, the penny dropped: this was a big deal.

The autonomic nervous system (ANS), which in my case is damaged, talks to all organs. This system controls the fight or flight response. Dysfunctional ANS is either primary or secondary. Primary is more impactful, permanent feature than the secondary type, which is triggered by something else. Fingers crossed that this autoimmune condition – where your faulty immune system attacks the body – is of the secondary version (as I think it is). Cure the cause of the autoimmune response and your symptoms are likely to improve, though never go away.

I shall spare my readers the intimate details of my symptoms, suffice to say that my heart, breathing, blood pressure and temperature regulation, are skew-whiff. Sudden, loud noises feel like a life-or-death attack: I flinch. Standing up causes my legs to fill up with blood, requiring a lie-down to achieve equilibrium. Sleep is disrupted and frequently narcolepsy-like. My mornings are worse, improving as the day progresses. At times, the tiredness is all-consuming and sleep non-restorative. At other times, I can walk quite far and perform some work. Other than the occasional unpredictable shooting pain, pain – mercifully – does not feature. Now that’s something to be grateful for!

As a result, I have quit wheat/gluten (following a blood test sent to the US), sport, alcohol, caffeine and most morning work. Daily, I must consume vast quantities of liquid in order to increase the blood supply. Fortunately, I’m instructed to add salt to all my meals, to retain liquid and therefore increase blood volume. Perhaps the wheat/gluten intolerance caused all my problems: I hope so.

What’s the prognosis? I don’t know. What I can say is: I’m not angered by this impediment. Several years of daily blasts of Stoic philosophy have prepared me for this. I am, though, profoundly sad for my family and my awesome work colleagues, as they all bear a greater burden. But my children will learn to appreciate their health and empathise with those who aren’t well: such a great lesson. My colleagues will thrive, stepping up, challenging themselves and continuing our mission.

“The obstacle is the way,” as Marcus Aurelius would say, whose advice I recommend to injured people in my Truth Legal Blog. I shall master this obstacle.