JayCS’s Fibro Blog

2023-09-20 Wednesday - recovery? No. RR/supp changes? Dunno, I was pretty hopeless.

What … worked / went wrong … today:
First I got caught up in all hamster wheels possible, guinea pig, stressful work mails and not checking blood pressure, and when I was it was too high, but I couldn’ do anything about it. couldn’t manage to get out.
BUT: I slept well Tuesday night, so saved the stress up till Wednesday morning, and made sure I did hardly anything else, kept outside for it all morning till late midday, made sure I felt good about getting the work stuff finished by then and no longer looking at it or any reactions afterwards (after a further really annoying boss mail really got me sort of pissed off, but I managed to work through it really elegantly, writing her again without sending it off and I’d already done the things she didn’t want me to do, but I thought was right, so I will win, and if I don’t, I’m out of this crap.)
AND: Hardly any additional symptoms, praps a bit of stress burning sinuses in the evening cos I was speeding around again, even tho I’d gone thru the garden with my phone as a torch to find new stuff, like insects.
HOWEVER: Suddenly at night, after doing everything right, work came up again, and had to struggle to get it down again, some plant identifying brought my blood pressure down, stopping that it went up again, but NSDR then finally did the trick. (But suddenly a music track came up after I’d listened in to in the evening, and woke me up, but was OK.)

Habit encouragement… :
Time (= stress) management:
Keep blog time up: :x: Late this evening before bed, so ignored screen curfew a bit.
Keep forum time down: (:x:) - could have been better, but also worse. :white_check_mark:
Jump out of hamster wheels: :x: no, but made sure I ran thru them all morning and then finished. So didn’t jump out, I made sure it stopped turning :white_check_mark:, and didn’t get in a new one, which I could have easily, cos I was actually meaning to work on a different project :white_check_mark:. Oh how I’m looking forward to no longer working any more.
Self-treatments:
Wall sits: :x: - once TT was more than enough, too tough, the 2nd time I cancelled, shop in the evening kept down to 5’, that worked fine.
Balance exercises: :white_check_mark: - yes, actually! Whilst walking on the flagstones in the garden.
Prepare supps by 15:00: :white_check_mark: yep, really early today.
Back exercises by 16:00: :white_check_mark: yep, around then, talking to my wife.
Encapsulating by 17:00: :white_check_mark: well didn’t, but didn’t really need too, which is no excuse :x:
:new: White/blue lip massage / puckering: :white_check_mark: - doing it now… (cheating!! :laughing:)

How was I today?: Feeling 70-80%-ish (:white_check_mark:), energy today (:white_check_mark:) - compared, sleep Tuesday night :white_check_mark:, sleep Wednesday night :white_check_mark:, nausea 0% :white_check_mark:, fog 10% (:white_check_mark:), 0 bites :white_check_mark:, vertigo 0%, 100% of the time (:white_check_mark:).

Today working mainly on … time management, self-treatments RR, energy?? - well to tell the truth I was only working on “work”, and didn’t have any capacity for any of this at all, which was terrible for self-care, I have the feeling I had high blood pressure all the time, altho I didn’t really feel that tense physically, and also not that “stressed”.

RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th: ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌

Sep 12th: No more spike periods after stopping eleuthero on 10th. 13th: A few spikes and not enough dip at night will have been from the “flu”. 14th: Not brilliant, not diligent at daytime, but at night. 15th: When >150 that will always have been after doing something and it always went down <140 soon after. 110 at night, better than <100. 16th: Day same, night <100 with nauseous sinus headache and cold. 17th Day same, up at night in 2 hamster wheels ended on 130, slept 4h and then another 2h without breaks! 18th: Hamster wheels in the morning ended on 140, then OK, at night >100. 19th: Good at night after a break, considering boss stress shortly before bed, in the evening moving too much to keep the RR <150 for long.

14:20:00 151 101 70 20.09.23
17:28:00 168 102 75
17:30:00 148 91 71
17:32:00 161 96 75 urge
22:29:00 177 94 75
22:30:00 148 84 72
22:32:00 150 86 74
22:33:00 138 84 72
23:48:00 126 71 78
00:32:00 122 81 77
00:33:00 143 81 67 After 6 OK, but then boss thoughtscurbed the dip
01:09:00 129 97 69
01:10:00 123 80 63
01:11:00 118 80 60
01:23:00 141 82 68
01:57:00 113 79 70
03:50:00 120 76 70
03:51:00 125 81 66
05:51:00 117 76 72
07:15:00 134 86 68
08:33:00 155 91 71
08:34:00 148 89 68
08:35:00 130 81 65
08:39:00 126 83 62
1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 2:0? (moving 20%, talking 20%, counting 0%) ➔ 80%/4 ❌, gardening/moving ➔ 80%/3 (✅), talking 15' ➔ 80%/3-4 ❌. White lips 60-70% (❌). Exhaustibility "90%" and sleep ✅, click for details:
EXHAUSTIBILITY today: “90%" (minus cos I hardly get above my energy limit, so it might be more). Changed on Aug 23rd: Energy was up to 18-20(-24)% (TT 5:1, workout possible) since June 21st 2023 (and new symptoms better) from new circadian rhythm, but kept going down to 10% (TT 0-2 games) from monthly triggers, see #3 Triggers. Today's ENERGY profile moderately slow, with "12h rest"), 1h very slow, 2h slow, 1h medium/quick
SLEEP (click for details): 7h18, up 5x (1h10), 1h shallow, rest probably pretty deep, but too high BP. ✅ sinus headache 20% again from about 4 on, despite daytime BP level, which proves that the sinus headache at least tonight was from histamine (yogurt I think), and not BP, headache up to 25-30% for an hour after getting up (❌), everything else OK ✅ ➔ getting up: 80%/2 ✅.

6 till 0:30, RR - boss thoughts. 1:04 pee after thumping. then again thumping 1:36 garden -1:54 NSDR -2:52 till Sky & Sand woke me up 5:48 teeth -7:03.
Sleep 22:35-7:03 Sum: 1h25+7h03-(50’+4x5’?=)1h10 =8h28-1h10

2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Tons of work stress, but made sure it was done with by early afternoon and no more thoughts about it. Click for list...."

(1) JAB#3 (on Nov 7th 2022) caused MCAS / histamine problems like the first 2 till around July. Esp. ENERGY DOWN further to (10-)15-20% (max.), but more slow energy. Each jab -5%.
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine pill Feb 24th till Mar 23rd: more energy, but lost appetite and weight and sleep, antihistamine back up to 10mg to curb T4-insomnia & histaminey symptoms (stopped cos causing nauseous sinus headaches & painfully dry mouth).
(4) Mar: inkling of Covid, negative, but cough, appetite, night sweats…
(5) Apr: cancer checking ending with weird onco,
(6) May 20th… 17 stress triggers, till end of May: 8-12%, seizures May-June every 10d.
June 21st: circadian rhythm Better to 18(-24)% a few days, but mostly back down to ~10%:
(7) July 19th-24th: 3 garden bird deaths
(8) July 31st-Aug 6th uro exam and methylene blue trial.
(9) Aug 9th… severe vertigo, checking, back to minimal blood meds.
Sep 12th: These have been stable for quite a time: Histamine/MCAS symptoms: Nauseous sinus burning headache: 0% :white_check_mark:, tongue burning: 10% day, 20% night :white_check_mark:. Watching “monthly” TRIGGERS (updated Aug 23rd 2023) that have brought up additional symptoms at least once a month and are continually bringing energy down from 20% to 10%.

3) DOCS: Last update Sep 12th: VERTIGO/BP: Reduce BP spikes. ONCO/URO: No uro cancer. Click for details.

Still no other explanation for the “B symptoms” Feb/March (Mar 29th: night sweats, cough plus appetite & weight loss) so back to T4 + CoV. feedback from onco appt. Apr 24th is STILL pending.

WAIT A MINUTE, I had a seizure a week or 2 ago, haven’t put that in the template.

4) UNDER CONTROL ✅ (attention necessary (✅)):
1) GI, pee, local pains, weather, dry mouth well under control: Details...

except GI: stools loose0% :white_check_mark:, appetite :white_check_mark:, pee pain: 0p1-2 :white_check_mark:, lower back unrest :white_check_mark:. Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND :white_check_mark:, dry mouth (day and) at night at least not hurting/sticky (:x:).

2) Seizures and esophagus blocks fairly under control - click for details. Last SEIZURES: Aug 9th, vertigo day: (2). July 17th (2), Increase to 2-weekly in May-June was stress, histamine, and less GABA, before that monthly. Last ESOPHAGUS BLOCKS: Sep 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.

Last focal seizures: Aug 9th: 13:42 & 15:40 (after vertigo). Aug 1st: 4-5x seizure-ish. July 25th: seizure-ish 3-4x. July 17th: 18:30 19:55 after thunderstorm. July 7th seizure-ish 4x. Increase in May-June was stress, histamine, and less GABA: Jun 23rd: 11:30 12:15 14:00 15:06, 2 before, 2 after antihistamine, maybe from the confused night, taking sleep meds too late and more?? Jun 16th 20:05, June 6th 13:45 & 14:35. May 25th 17:40 & 21:00, maybe from higher histamine and not enough GABA lately, May 14th 9:00 and May 13th 20:00 from stress I think, but I have also reduced the night time GABA praps too much. Apr 16th 13:25, Apr 15th 22:00 (GABA too late plus cold type symptoms = histamine), Mar 31st 19:00 (too little GABA, too strenuous meeting), Jan 15th 10:40 (from a pee urge, only 2nd “wave”). Jan 14th 23:58 (no trigger, praps missing out on .6g GABA Friday). Jan 5th (after being scolded for being hyper). Dec 11th: 1x. Nov 21st: 2x.
Last esophagus blocks: Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 11th: unusually eating a peach, which I thought’d be easy, wasn’t tho. Aug 31st supps again. Aug 26th: drinking supps with buttermilk instead of almond milk, Aug 8th: carrot, then chocolate. July 23rd cos distracted by the Kami stress. July 16th I was concentrating on testing if hazelnuts increase my nicotinic acid flush with my 3rd meal, and disregarded a slight throat pressure, which went totally wrong, was the last straw for an esophagus block, so had to get it out, lots came out, incl. supps, and needed to wait quite a bit afterwards. (June 6th narrowly avoided.) May 31st, argument made me forget to concentrate on a small carrot. Apr 4th: Carrot, got it out quick. Mar 26th just the supps. Mar 23rd: Tiny bit of parsnip I think it was, had to get it out, had no patience to massage longer than 5-6’. Mar 13th (roughly) same as: Feb 26th: midday: block not waiting long enough with muesli after supps. Feb 20th eve: block from I think carrots resolved with massager. Feb 5th: From C-supps. Jan 19th: Sometimes do use massager a while to make sure. Jan 17th: I can take my B supps and then go to bed again atm. Jan 8th: Block after evening supps, maybe from twisting. Jan 7th: Testing if twisting before, while & after pills & food increases esophagus blocks Jan 6th: Slight blocks. Jan 5th: Medium block in evening. About 5x small blocks from pills around end of the year. Dec (20th, 15th) 11th (9th,) 1st, Nov 30th 2x, 29th 2x, (28th,) 24th, 22nd, 20th. Powder blocks in funnel if it’s too much in one go…

SELF-TREATMENT & SUPPS optimal, stable, but necessary - NEW Sep 11th (started around 8th): Stopped eleuthero and reduced ginkgo to 2. Still NADH sometimes, lots of Ω3 (cos not enough from olive oil), plus passiflora, magnolia & 0.3g GABA at daytime instead of night. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd. Next: LDN!
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Next: jaw-joint?
Supps Aug 6th: 40 supps (was 42), costs 435€/m (was 470) +20€/m cps. Sep 11th (started around 8th): Stopping eleuthero and reducing ginkgo to 2 is reducing BP. Sep 1st: NADH, passiflora, magnolia and more GABA to daytime. Last changes see before Aug 22nd next: theanine divided up into 2x0.1g, maybe LDN, probably not creatine, colostrum or ATP again. For details on the lists, with dosing batches by times and tubs see before Aug 22nd:

No ‘research’ today (worth mentioning) - too much for work.

Quality of life: 85% (work stress shouldn’t mean a bad quality of life, “Feeling well”: 80-85%.

Lessons in self-care: I don’t care about my blood pressure today! Coping with work is more important.
Reasons to be cheerful:
a) Coming back after table tennis in the morning 2 subadult Blackbirds were delighting in the orange-red berries on our firethorn, one lighter brown with an orange beak, I waited quietly until they were finished or were probably irritated cos they don’t like being ogled upon.
b) Totally surprised by finding a crimson clover in the middle of our meadow, no idea how it got there. So I’m planning on protecting all the larger clovers around it, to see if I can get a crimson clover meadow going - altho a bit late in the year, they’re sposed to flower in summer! Well, I spose the way our climate is going this is summer.
c) Going thru plant photos of the last few days it was nice to find
d) Today or yesterday I realized I’d solve a puzzle I’ve had for it feels like a year - a brown dry thingy I’ve still got, that no gardener friends could tell me - it’s are dried up evening primrose flower! - got that cos I was looking at an evening primrose still blossoming and suddenly recognized a similar twiggy thingy, like these lower down https://marylandbiodiversity.com/view/3524
e) In the evening I found a few insects on the
Simplified: -
Foggies: -

Development: Look before Aug 22nd for more details. Click for links to "biggest successes" (after June 18th 2023), "summary" (on June 14th 2023), jab side effects, foods, blog references, e.g. abbreviations, & guideline for symptom tracking & trigger hunting

Entry changes (after June 19th 2023)
Biggest successes (after June 18th 2023)
Summary of fibro 2020-2021, jabs 2022 and first half of 2023