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.