“Phil’s well”; “Phil’s
sick again”
The simplistic dichotomy of the above does not ever represent
any reality.
Those uninterested in chronic illness/my story can stop
reading now, but the past two days have been astonishingly bad.
I’ve been in really good health for almost 6 months,
since a crash in mid-May following 4 months of ill-health. I have had NO “bad”
days in Sheffield since moving there in May. None.
Ah: Sheffield must be “good” for you, right?
Scotland was “bad” for you, right? (**)
So I’m “better”, right?
No; back in autumn 2021 when a simple short 2-day “gastric”
“upset” brought back swimming head, PEM, exertion intolerance & brain fog,
I have realised I was NEVER “recovered” from the disgracefully badly researched
& misunderstood chronic life-ruining illness “ME/CFS” (also contains
postviral fatigue syndrome, Long Covid; Vaccine injury, among many under that
umbrella)
Remission was hard won (that’s another story), but I had
seemingly gained it again. A wonderful 2-weeks trip to Kalymnos where I climbed
harder than ever seemed to confirm this. A year ago, I also had a great trip to Kalymnos,
with one “poo” day. But that was also a big success.
Last weekend I noticed I was *very* tired. I’d had a 17 hour journey (door to door: 19
hours bed-to-bed) to return from Greece. “That
would make anyone tired, Phil!!!” everyone would shout. Of course. And I was
very tired . Nothing to see here.
I was still tired Sunday morning, went for a walk, was
SHATTERED that afternoon & had to nap.
Monday, I went to the indoor wall – I felt sooo tired, but
“everyone’s tired Phil!”. I climbed REALLY well – proving I was well, right?
Right?
Of course not. I was climbing well because I’ve just had
2 of the finest week’s rock climbing of my life. I was SHATTERED afterwards,
went to the shops, napped again….. I just need a good night’s sleep….. sooooo
tired…….. I’m fine….. (*)
Packed up – SHATTERED - the following morning to come to
Scotland – arrived (the drive was mercifully problem-free) – I was so tired I could
barely be sociable.
The next two days – alone in a house in Peebles – I was completely poleaxed, napping morning,
afternoon & evening on sofa. Cat
pics are nice & everything, in fact the cats liked having me poleaxed and
in dressing gown.
Yesterday I managed to take a shower, and that was an
achievement.
I have had no “brain fog”, which for me is the worst, the
most glaring and indicative symptom of a serious crash. I have had terrible
indigestion, though, which goes hand in hand with a “crash”. It was so bad two
nights ago, I actually HAD NO TEA, as my stomach had been distended &
bloated for 6 hours in the run up to the evening.
I make sure I never say I’m recovered from “ME/CFS”
anymore, ever. How can I, when I could,
right now (or with a bit of travel) make myself horribly ill, by either a)
trying to run, say, 5 miles or more; b) hiking up the biggest mountain I can
find, eg. Ben Chonzie, or c) going anywhere near an Alp above 2300m with some
rocks, snow, ice & exposure, particularly if there’s a chair lift or cable
car involved.
Life isn’t perfect. I’m just trying to navigate it, &
this week, I got it wrong / my situation/s (travel) were simply too much for me.
We all “get tired”, but we do NOT all
have the condition I carry below the surface all the time.
Compared to most with ME/CFS/PvFS/ LongCovid, Vax injury,
Lyme, etc, I am one lucky fucker, and I know it. I seem to know how to make
MYSELF improve/ go into remission; but it doesn’t work for most.
But (as someone who used to be held up as an example of a
“full recovery” case from ME/CFS), I have accepted I will never be free of this curse.
There will be no “cure” anywhere near my lifetime. I’ve accepted that, although I am heartbroken for the 100s
of thousands who suffer for decades with no remissions, no treatments, no
support. (I’m only sad about the loss of
my high-performing veteran running & orienteering career; but sport is a
luxury, of course).
I can choose to be well.
(*) People often think those with chronic fatigue focus
too much on their symptoms. In fact it’s the opposite – we try to make out that
we’re well, even when inside we are struggling. My best mate said (on telling
him how tired I’d been on Monday) “You hid that well!”. Of course I did – I was
in denial, and did not want it to be true. But heh, “top” psychiatrists say we “focus too
much on our symptoms”, so it must be true – right? No. They
have caused untold damage to the cause in the past 33 years. Fuck
you.
(**) I’ve worked out that I was very unwell for approximately a third of my residence in Scotland.
In my better times, I ran my best half marathon since my 20s, I finished second
in the Scottish & British Long distance orienteering championships, helped
my club win gold in the mixed sprint relays British champs, I traversed Glencoe
twice bagging many Munroes; I got a job working on genetic research into
ME/CFS, I played guitar at a ME/cfs demo at Holyrood, so ….. it’s merely
circumstantial. But …. how ironic, my complete collapse on arriving back here
this week …… just irony, right?
Right, Mr Truman? (that’s another story) .... 😕
