2023-09-12 Tuesday - recovery? RR/supp changes? At first both: yes - until CoV-type symptoms came up at 14:00, a more fluey Ache, cough from mucus, belly discomfort, feverish and temperature… also a “bladdery” night, up 11x… 
What … worked / went wrong … today:
Habits worked, “flu” another challenge, but adapting to it went well.
I seem to need a bit of habit encouragement… so:
Time (= stress) management:
Keep blog time up: 
- First, and trimmed the entries again.
Keep forum time down: 
Jump out of hamster wheels:
Self-treatments:
Wall sits 30’‘:
Balance exercises:
Prepare supps by 15:00: nope, but by 19:00 ()
Encapsulating by 17:00: nope, but some around 18:00 ()
Back exercises by 21:00: nope, but before 22:00/bed (), whatever the pain and 
realized that my clavicle worsening is from becoming lax with the back exercises. So rather than taxing myself too much with the pain and tiredness I did only half of the ones lying on my back and then lay stretching for 10’, which is a great idea, so I get 2 small rewards: .
Esophagus blocks: Realizing to get all the supp capsules down thru my Schatzki ring I need to stop leaving them in my mouth, e.g. 4 at a time and swallowing just one, I need to take them singly, swallow with a big gulp quickly. That’s something I won’t need to encourage, just realizing it will change. But I can see it’s not easy at the moment.
Ache: I tried to test my energy limits a bit more, but realized at 14:00 that I have a severe Ache (4-5 
) from the 4 wall sits, working, plus after feeding the guinea pig for an hour. So now a break! Even at 15:00 I’m still severely hurting, what is this and how could it creep up on me? 15:42 still. I want to eat, but it feels wrong to move much. Taking supps hasn’t changed anything.
Cough: My wife noticed the cough I had since CoV got worse again, so asked me to do a CoV-test, did that at 15:41, as ever negative inside of 2’, stayed that. But at 17:00 I’m starting to feel the inexplicable Ache is a more ‘normal-fluey’ kind of slightly feverish ill feeling, cos something’s inexplicably not quite right with my belly, also the cough which is worsening in the daytime, however without sore throat… I denied having CoV, but I’ll ask again, she has to test anyway. 19:00 cough seems slightly better.
After managing to eat at 20:00 getting grocery for 5’, got the fluey Ache up to 5-6, gasping and sometimes groaning. Thought measuring my temperature with my new old-fashioned but no mercury thermometer. Also wondering if delaying my first meal to 10:30 like I have been the past few days, is a too high challenge to my system. Found the thermometer even in the dark and even having recently put it somewhere else, howzat! 
Drat it’s on 38° (using lowest laptop light), why? Now I need to shake it down… Arrgh, shook 12x and it hasn’t budged. And there’s a crack in it, how come? OK, not a crack it shows where 38 is. And it took about 50 shaking to get it down under 36, which is normally my temperature… 21:23 tongue. Yep, haven’t eaten before. Oh drat, didn’t clean it, better wash my mouth out after. So 37.8°C, which is 2°C higher than usual…
Now wondering if this is CoV, but not worse in the morning, so doubt it. Other mad theories are PUU-hanta-virus from our bank voles (but symptoms not weird enough) or cleaning out public waste bins without a mask to look for my phones + cards a few days ago.
How was I today?: Feeling 90%-70%-ish (-), energy today () - compared, and it’d’ve stayed OK-ish if the fluey Ache hadn’t curb what I do, sleep Monday night , sleep Tuesday night (/) - considering, 1 bite, right shoulder, OK-ish first, but then that and the other 4 got worse… (, 20%, lavender), vertigo 0% .
Today working mainly on … time management, self-treatments RR, energy.
RR: HIGH BP PERIODS: Sep 12th: No more spike periods after stopping eleuthero on 10th. 13th: After flu symptoms starting at 14:00 BP up to around 140/80 at 16:00, 150/90 at 15:30, >140/75 at 19:00, >150/85 at 22:00, dipped at night only 3:30-5:30, rest around 130.
| 09:01:00 | 123 | 86 | 61 | 12.09.23 |
|---|---|---|---|---|
| 13:29:00 | 129 | 80 | 70 | Feeding guinea pig was no problem |
| 13:30:00 | 118 | 80 | 71 | |
| 15:54:00 | 172 | 87 | 70 | Moving, Ache 5!? crawling, but relaxed |
| 15:56:00 | 158 | 91 | 76 | |
| 15:57:00 | 150 | 87 | 67 | |
| 15:59:00 | 139 | 78 | 69 | |
| 16:00:00 | 143 | 84 | 68 | |
| 16:02:00 | 141 | 79 | 71 | |
| 16:24:00 | 169 | 89 | 77 | |
| 16:25:00 | 149 | 89 | 71 | |
| 16:26:00 | 153 | 90 | 77 | |
| 16:27:00 | 154 | 87 | 74 | |
| 19:08:00 | 144 | 72 | 82 | |
| 19:12:00 | 153 | 76 | 82 | |
| 21:56:00 | 165 | 95 | 82 | high pain, pee urge |
| 22:02:00 | 140 | 80 | 78 | after pee, bladder pain 6, so more GABA |
| 22:03:00 | 156 | 80 | 75 | shivering a little |
| 22:04:00 | 154 | 85 | 81 | Standing hurts, relaxing, shivering a little |
| 22:54:00 | 157 | 79 | 75 | Nostrils 20%/0%, p5 |
| 23:14:00 | 134 | 77 | 79 | Urge P5 to pee p3, less shivering, less nostrils |
| 23:32:00 | 115 | 77 | 80 | sore throat only 5% dry mouth 40% |
| 00:13:00 | 127 | 69 | 87 | urge P5 to pee p3, nostrils 0/20, Ache only 3 all this time. |
| 00:34:00 | 134 | 69 | 77 | overheated, bites 20% |
| 01:25:00 | 129 | 77 | 77 | P5 NSDR didn’t work again, cos it makes something worse, can’t remember what |
| 02:04:00 | 132 | 66 | 74 | P4, 2 bites 20% |
| 02:55:00 | 123 | 85 | 72 | |
| 03:40:00 | 111 | 75 | 73 | |
| 04:23:00 | 102 | 67 | 74 | 4 bites annoying, lavender on them |
| 05:10:00 | 108 | 74 | 66 | arrh, Ache 3 |
| 06:29:00 | 147 | 72 | 75 | After loo downstairs |
| 06:30:00 | 126 | 79 | 72 | feverish; dozed another half an hour |
Up 11x “” at night - high bladder urgency, frequency and pain due to overall fluey Ache. Morning hopeful, afternoon extremely limited.
1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise ❌ at 14:00 vs. post postural ache ✅. Stiffness ✅. No TT, gardening/moving ➔ 80%/3 (❌), talking 15' ➔ 80%/3 ❌, from 14:00 on up to generally 4-5 even without much movement, this is neither PEM nor PPA. White lips60-80%? (❌). Exhaustibility "88%" and sleep ✅, click for details:
EXHAUSTIBILITY today: “88-93%" (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 "14h rest"), 2h very slow, 0h slow, 0h medium/quick
SLEEP (click for details): 7h29, up 11x (55') ❌, all fairly deep. 60-70%/3/15% ❌ p5-3 ❌ drymouth30-40% sore throat0-10% itch 10-20% nostril/s0-20% (✅), everything else OK ✅ ➔ getting up: 70%/3-4 ✅.
Sleep 22:05-6h29
Sum: 1h55+6h29-(11x5)’ = 8h24-55’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: Work wasn't a strain, nothing was a strain, but then the "flu" caught me unawares. 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% , tongue burning: 10% day, 20% night . 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.
4) UNDER CONTROL ✅ (attention necessary (✅)):
1) GI, pee, local pains, weather, dry mouth well under control: Details...
except GI: stools loose0% , appetite , pee pain: 0p1-2 , lower back unrest . Jaw: 2 new fillings June 23rd were enough, solved for the time being, but keep spaces free. Weather: SUN / WIND , dry mouth (day and) at night at least not hurting/sticky ().
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…
Seeing as BP was up during the feverish flu Ache anyway, I may be taking ginkgo back up to 3 tomorrow, it’s supposed to reduce BP as opposed to eleuthero which is controversial, but if that doesn’t work I’ll stop it too.
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:
Tidying up my quick scan ‘research’ on eleuthero, esp. high dose, perhaps increasing BP - altho this could be looked up any time and just goes to show that it needs to be watched and tested, which might have saved me, the docs and insurance a lot of trouble.
This German review disproves eleuthero having been found in studies to increase blood pressure.
“The contraindication “arterial hypertension” is not evidence-based and should be carefully re-evaluated for not unnecessarily excluding a large patient group from the benefits of eleuthero.” (dovepress)
However in me it may do so, at least when I stopped it my spikey BP periods were immediately reduced. But not 100% sure yet, still on it. May also be a combination.
Quality of life: 90-80-70%, “Feeling well”: 90-80-70% - Rainy all day with thunderstorms, I’m outside sitting and standing in my cellar entrance and going in the garden when it stops, and I love this. But then something like a flu hit me.
Lessons in self-care: Close watch on what I do with the “flu”, then it should be gone tomorrow, I prefer immune system strengthening umckaloabo to bronchial herbs at the mo.
Reasons to be cheerful:
a) Wife said Blackbird sang beautifully at 7:00 after the thunderstorm, wish I hadn’t still been sleeping, but nice to know.
b) Dusk: The 100s of Jack(daw)s on their home run at 20:00, 2 or 3 medium sized Bats in daring acrobatics, trusty Robin offering 5’ of evensong again at last.
Simplified: Combining wall sit with typing.
Foggies: I told my wife I don’t need a light on in the dusk, we can leave the windows all open. Then I took my supps and wanted to take them on the balcony, but 5 fell in the sink (dangerous for my stricture) and 5 on the floor (bad for my Ache). Well, I had a good laugh and then took the wet ones quickly and the rest over to the balcony. She’d’ve have tut-tutted if she was there, but thankfully I’m all alone. Less went wrong went it was darker, cos less distraction, better concentration. And do less risky stuff. And blurry eyes is no longer a problem.
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
- 8 weeks after jab#3: stabilized
- 1st Jab-sfx-summary, last edit: Feb 7th.
- My food 2023.
- My blog references, e.g. abbreviations, supp chart/overview
- My “How to symptom track & trigger hunt”
- Next up…: Summaries
- Research ToDo: supps webinar on Dec 2nd, fibro webinar transcripts, the MCAS summit, read