“Phil’s well”; “Phil’s sick again” - November 2023 -a blip?

 

“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) .... 😕

March 2023 - Phil threw it all away again, didn't he? 

Don't do this on new years' eve if you've spent all Christmas break with brain fog, cos you won't be "better" just because you *want* to be "better", haven't you learned? 

OK, so post-November Blog entry - where I thought I was pretty-much better (& my housemate, who sees it ALL, agreed & even suggested “there’s nothing wrong with you anymore!)” - I have lost it again, and I did this by a small sequence of errors, which in no way deserved the outcome - months more sickness, and easily-triggered brain fog / malaise.

 (First. I must point out that I am in no way as unwell as I was this time last year. Nothing like. Vastly better PoTS, milder brain fog, and no gastric symptoms, and exertion tolerance - whilst pitiful - is not non-existent, as it was last January - March. No night-time tachycardia, either)

 Having climbed in Greece harder than ever since 2017 (amazing!), I returned full of hope in early November. I “celebrated” my 25 year ME-versary (5/11/1997), and continued life, climbing indoors, jogging, feeling 100% well every day,  and jog/running some orienteering races.  In mid-November, I was first over 50 veteran in an Edinburgh race; catching & dropping other “old” guys. Late November, due to my navigational abilities, I won outright a race in East Lothian.  Yes - 1^st place. (an hour).

 So what does this do? It tells me I am well, and that I can do more. So what do I do? I do more:  I (finally) ran 5km in a one-er (25 mins), and that was fine - zero payback. I then had a weird 2-week spell of chest pain - surely muscular? - I had a load of tests and, unsurprisingly, all came back fine.  I celebrated by going for another 5km run - all in one - I had been fine 3 weeks earlier, so “my boundaries” told me this was risk free.  I felt grim, & my pulse was too high, but “I said I was going to do it so I’m doing it”.

 In “theory”, this was all “fine” - we “know our bodies”, we “know what we can do”, we “know our limits”, right?

 RIGHT?

 Not fine. Bang goes 2023. It was 21^st December. My Christmas & New Years were HORRIBLE - brain fog & excessive “fatigue”. “Oh I’ll be fine in a few days!” - but I wasn’t!! I climbed indoors on NYE - “indoor climbing never affects me!” - well it does, Phil, when you’re already a) in denial & b) in a crash.

 January was hell, I suffered terrible indigestion on top of brain fog & “easy fatigueability”(oh how benign that sounds!). A holiday to Portugal was cancelled for the second year in a row (Earth to Phil.... hello?). My housemate has been through too much now, and this was, & is , the final straw. I could NOT - no matter HOW much I paced, rested, etc - shake off the brain fog. A few small “things” led to more bad days, which stretched on, & on….. 

 February saw an improvement (ABOUT f***ING TIME), I was home alone 2+ weeks, and stabilised, even attending Scottish parliament for the ME debate in Holyrood.  I then cat/house-sat in Sheffield for 2+ weeks, and felt really well for 80% of the time, but sadly, in my mind, I was 100% fine again. And, stupidly, I re-introduced two things (NEVER introduce two things at once!) - indoor easy rock climbing, & easy jog/walk orienteering “races” (one of which I won - I used to be an international (veteran) at this sport.... quite good at it, y'know... feels like riding a bike..... )

 Result? Yep - brain fog, feeling rotten, fatigued - all over again. 

Most of January was spent like this. Not all bad, of course.... but terrible indigestion on top of brain fog & zero "exertion tolerance".

 Looking at Steve Birkinshaw’s blog -a record breaking endurance fell runner & orienteer (our paths have crossed a few times) - he also noted that following his 7-day record Wainwrights run, he got terrible fatigue & brain fog for up to 18 months (!) later. He had many tests & was eventually left (like me) with “CFS” (yuk). His blog entries for 2015 tell a story all too familiar…. I should be OK by now… why am I not? But I note that he, like me, had issues when his HR went above 130. I think this is key during this period of “recovery” - keep the HR below say 120 (walking uphill, it can get that high), & wait, & wait. Worked last year.  Should work again (already as I type this, I feel improved).

 * * * * *

 “Phil’s fine!”

 “Phil’s not fine!”

This stupid, over-simplistic dichotomy needs to be culled. I have good patches & I have bad ones. The trouble is, that during the BAD patches I cannot imagine why I was ever “well”, and during the “good” spells, I am, as far as I can see, 100% fine and all’s well, I will never crash again. In effect, I gaslight myself.

Moving on. I used EliteHRV for 2 months but it told me nothing, & my readings were generally fine. I’m starting the Visible App, which other pwME & pwLC use, out of interest really. Will give me something to do, & compare to others. I still really believe that I am not that sick! Obviously, it’s disappointing to see that I am again in “reductive” mode (ie. I am still reducing what I do in an attempt to get full - and I mean FULL - control over symptoms).

 (*) - in my case of ME/cfs, postviral syndrome, whatever,

 I remain unable to partake in DecodeME (where I worked until Feb 2022), as I am not sick enough.  I do not meet ME/CFS ICC or IOM criteria. So - I am “not ill” - I have no diagnosis - and no one - NO ONE - will *ever* research the likes of me. I am past caring, I knew this 15+ years ago, so the responsibility to improve lies solely & wholly with me. How will I do?

 Watch this space.  nb. played guitar in a wonderful local Open Mic evening - we had another session the following evening at a friend's house - I crashed on Sunday but was on the "up" by Tuesday.