Q1 2022 – How’s it been?
(Note: I do not meet the diagnostic criteria for "M.E./CFS" - Whilst I am very unwell, and everyone's saying "Phil's M.E. is back!", this is not strictly true - although I am clearly suffering from a postviral disabling condition, as yet undiagnosed by my GP). (I'd give myself "PoTS/postviral CFS") ....
Liz's cats have proved my main "activity" in 2022.
2022 is now a quarter over, and it has been a total
write-off, a once-in-20-years disaster, there are no other words to describe
it.
Here’s the summary:
October 2021 – minor
gastro virus & dizziness, malaise, fatigue, post exertional flares (brain fog).
6 weeks unwell – malaise; “dizzy”. Worst at 3
weeks (one week off work). Sport abandoned.
December 2021 – suddenly
(spontaneously!) symptom free, re-introducing exercise gradually – walks, jogs,
easy climbing. Optimistic (this would prove my fatal undoing). No symptoms in December; work fine (& a pleasure).
Early January 2022 –
Overdid the running on NYD (Parkrun @ 80% effort). Mid-January – (probable)
short, violent gastro virus.
Malaise (ceaseless brain symptoms / fog) ALL of January;
off work sick 3 weeks. Including distressing
& continuous (on bad days) IBS-like gastro symptoms.
Noticed (Orthostatic Intolerance?) racing heart
early Feb (up to 150 bpm on standing). Health continued to decline. Left job
by mutual consent by end Feb (5 weeks off sick in 7 weeks). Unable to
travel / shop / walk 1km. Pulse on standing increase of 40 – 50bpm (plus feet
turning pink).
End March – IBS/
stomach issues resolved; malaise & fatigue / fog in gradual remission
(rest/pacing); PoTS ongoing but pulse increase down to 30bpm. NASA Lean
test data available.
I can safely say that the New Years Day Parkrun
(seemed a good, new-years-ey positive thing to do, right? Sociable, too –
smiling faces everywhere, café visit after….) – time 22:14, compare that to
19:13 when coming second at 100% effort & 100% fitness in Sept 2021 – was
ONE OF THE BIGGEST MISTAKES OF MY ENTIRE LIFE.
No, this is not an exaggeration.
I lost my health, I developed PoTS, &,
despite saying I would not relinquish my 4-day a week WFH job (about which I
was passionate – the best job I could
have had), I eventually was forced to admit (after 5 week’s sick leave in 7
weeks – come ON!), that it had to go; and I had (optimistically) booked
a holiday to Portugal for late February that I clearly could not go on (I
cannot stand in a line; walk for >6 minutes; my pulse goes to over 120;
blood pools in my lower legs & feet, which go pink), and in fact, having
made the decision not to travel, I spent the next three days BEDRIDDEN with
terrible IBS, CFS and PoTS symptoms.
In the past month, post-losing job, I have, through
diligent pacing, resting etc, (and having NO LIFE WHATSOEVER) stabilized my
situation, and now, good days outnumber the bad – so long as I do not do
anything. We finally worked out why
EVERY time I went to town in the car to go food shopping, I was ill (get this:
One trip to Tesco in mid-January – when I rightly assumed I was going to be OK–
who wouldn’t? - led to THREE WEEKS OFF SICK, people!). It wasn’t the drive, it was the more than 10
minutes in the shops. More than one
shop, that fateful day, as I was feeling efficient, & wanted to get
things done.
I got three week’s sick leave as a reward. And felt
AWFUL (brain fog & fatigue)
…
So, Liz & I (I enjoy driving) have devised a
solution: I drive to town, we go into Aldi together, I spend max 10 mins MOVING
AROUND & getting stuff for the trolley; I go back to car & put feet up
literally (no way can I stand in a queue). Then drive home & unpack, which
I can help with briefly & quickly – pulse usually around 100 for this.
Going forward, how hopeful can I be? Mixed. There’s no
guaranteed effective treatment for PoTS, and of course, I am unsure how severe/chronic I am / am going to be.
I must add that I do not meet diagnostic criteria
for M.E./CFS. I am very happy about
this. (I did meet them 1998 – 2002). This means I will not be able to be
recruited in the ME/cFS
genetic study that I was working on from Sept 2021.
2022 is a write off for me; the next three months are
also expected to be a write-off, but I hope that they will be stabilizing, and
something to maybe build on, following the complete collapse of my life in the
first 3 months of 2022, the most awful of years (1998, 1999, & 2000 were
objectively worse, however).
Why didn’t I just stop running from mid-October?
People with chronic disease often torture themselves for years over the mistakes
that seemed so small at the time, but had the most enormous consequences. I
could walk the Pentlands with Liz in December: (12km! Incredible views…); I
climbed at Ratho & Eden Rock; I went to a shopping centre. All those things are now denied to me – 3
months & counting. I am so, so
upset. But there is no way back. Only
forward. And I’m scared I’ll only get a small portion of my “old life” back.
But if I do, I will not try to scale the heights I reached
in 2021, not this year. Maybe not ever. Health
trumps everything.
On a "good" day - topping up the hot tub. Hot baths aren't recommended for PoTS. Sod that.
April 2nd. Literally driven to the floor on the kitchen (I had been preparing lunch) by a heart rate of 110+. At this level, my CFS symptoms are going to be affected/triggered, and so my body is actually damaging itself by it's autonomic nervous system overreacting. Vicious circle.
"Does Philip have M.E.?" - no; I barely scrape/fail the lame "Fukuda" criteria for "CFS".
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