(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.