2023-09-28 Thursday - recovery? Bit more energy, I think sleeping <8h helped again, but difficult to know when time’s up, cos I always feel tired however long I sleep. RR/supp changes? Quite good, but got to check a possible regular spike at 16:00-18:00.
What … worked / went wrong … today:
My weight is still around 80kg after all.
Habit encouragement… :
Time (= stress) management:
Keep blog time up: 
Keep forum time down:
Jump out of hamster wheels: ()
Self-treatments:
Wall sits: 
, but TT twice
Balance exercises:
Prepare supps by 15:00: , 20:00 ()
Back exercises by 16:00: , 21:00 ()
Encapsulating by 17:00: , 19:00 ()
Treat 1) jaw , 2) cough , 3) UTI .
How was I today?: Feeling 75-85%-ish (), energy today (), sleep Wednesday night , sleep Thursday night , 0 bites ().
Today working mainly on … time management , better self-treatments (), RR (), energy ().
RR: HIGH BP PERIODS: 10th-12th ✅, 13th ❌, 14th ❌✅, 15th ✅✅, 16th ✅ night ✅, but headache, 17th ✅(✅), 18th (✅)(✅), 19th ?✅, 20th ❌❌. 21st (✅)(✅), 22nd (✅)(✅), 23rd ✅✅, 24th ✅(✅), 25th ✅(✅)✅, 26th ✅✅, 27th (✅)✅ - watch 16:00, 28th: (✅)✅ watch 17:15 (but I'm sure I was moving) and at 21:43 my sitting got more and more uncomfortable, that's something I need to care about more.
|13:55:00|135|87|64||
|13:57:00|136|85|62|typing|
|17:18:00|166|94|65||
|17:25:00|152|87|60||
|17:25:00|149|88|62||
|17:26:00|150|92|64|This was after somehow moving around, shortly before TT|
|21:43:00|131|83|62||
|21:44:00|134|84|62||
|21:49:00|142|81|61||
|21:56:00|136|86|62||
|21:57:00|141|84|62|sitting uneasy, irritating|
|22:52:00|144|85|64|undressed|
|22:53:00|142|87|62||
|22:55:00|138|88|62|unangenehm, yucky|
|00:09:00|131|77|59|After going downstairs to pee|
|00:10:00|134|80|57|same|
|01:12:00|102|57|69|arrh|
|01:59:00|123|80|60|Cold Shower|
|02:14:00|118|70|61|After cold shower|
|03:44:00|134|79|52|during pee|
|03:46:00|108|65|63|after pee|
|05:40:00|111|87|73||
|07:26:00|174|77|59||
|07:27:00|129|78|62||
|08:17:00|150|91|66|nauseous sinus headache 20%, pics in garden and slight pee urge|
|08:52:00|146|94|67|after TT with pain 5-6|
|08:56:00|146|90|61||
1) Since Aug 9th BALANCING PEM VS. PPA: post exertional malaise (✅) vs. post postural ache ✅. Stiffness ✅. TT 2:1, 1:2 (moving 20%, talking 20%, counting 0%) ➔ 80%/3 (❌), gardening/moving ➔ 80%/3 (❌), talking 15' ➔ 80%/3 ❌, music 1' ➔ 60%/5 ❌. White lips60-80%? (❌). Exhaustibility "90%" ❌ and sleep ✅, click for details:
EXHAUSTIBILITY today: “90%". 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): 7h26, up 6x (45'), all deep, cold shower was cos of back again I think, cos witting felt yucky before going to bed. (✅), everything else OK ✅, 80%/2 ✅, ➔ getting up: 80%/2 ✅.
Sleep 22:55-7:06
0:07 10’ pee downstairs
-1:09 10’ 102!
1:56- 123 before FCS -2:11 20’ 118 after cold shower
134 during pee, 108 after -3:43
Sum: 1h05+7h06-(5+10+20+5+5=)45’ = 8h11-45’ =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) ✅: can't remember if there was anything, I think only short. 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 Sep27th: Wife's GP will get me a cancer appt., ask about GI and recommend if special bloods should be done (by my cardio, cos she does my special ones). 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: Sep 19th? (1). 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 25th: 15:15, but went thru, Sep 16th didn't! 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last focal seizures: Sep 19th?? or so. 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 25th: Sweet potato went down after 20-25’, not sure such a long wait with further eating is OK. But taking even more care with it on 26th was no problem. Also, taking a spoonful of omega 3 after the supps of the 2nd meal may have helped.) Sep 16th seemed scary. 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 27th: Starting around the 20th I brought ginkgo back up to 3, seems good, so I reckon the eleuthero was a problem. 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:
‘Research’ today
Now I’ve got my first LDN, 60x0.5mg, I’m again looking for information from people I can feel I trust. Masterjohn doesn’t say anything about it, but by chance I found a German video by “Alexandra” with FM, ME/CFS, MCAS and more, who here says the German post vac centre in Marburg also now prescribe LDN, that’ll be comforting for my wife. Her latest update here is it didn’t help for pain, but for exhaustion and many other symptoms. She mentions nattokinase which I don’t take, so here is what she’s taking. At the pharmacy an ex-colleague I met said her daughter has auto-immune and stuff since a stem cell donation, also “invisible”, no energy etc.
Quality of life: 85%, “Feeling well”: 70-80%.
Lessons in self-care:
a) Talked too much (4’) with mate before TT, and too tired, so thought better to stick to 2 games of TT, since I started with a pain of 3-4. (early Friday morning)
b) It’s difficult to emulate my sofa outdoors. I’ve got loads of old pillows out of the cellar and draped them around me, now I’m sneezing from dust, hopefully not mould. Not good when it starts raining. I need some kind of chair with something a bit soft on it, without handles. But I’m already feeling comfyer, altho I’ve left the plastic bags around them first. (Friday morning)
Reasons to be cheerful:
a) Red sky in the morning (- shepherd’s warning? - yep, it did rain quite a bit.)
b) Putting conkers in the bowls of water in front of our house together with the last suneyes, cos I love that shiny brown - let’s see how long that will last in just water, don’t feel like preparing them in any way (e.g. 25% glycerine).
c) New flower in the garden, I’m excited, the app was telling me it was something that I couldn’t fully believe it was, and now the blossoms are turning out purple instead of yellow. Might be a new different form of campanula/bellflower. But one of the suggestions is called ‘late Michaelmas daisy’ in English and … whaddayaknow: today is Michaelmas (German: Michaelis)!
d) Another seeming new subtype of sunflower has now fully bloomed, but this time the app is surer than with the previous one that it is a Jerusalem artichoke/topinambur.
e) Other mysteries I still couldn’t solve yet (either, Michaelmas isn’t more than a hunch). Like 3x single orange berries on a stalk without leaves in bed “R”. One with tiny purple flowers that reminded me of veronica seems to have gone, but the white veronica is still there, and maybe I can still identify the purple ones.
f) Saw a jay and a carrion crow fly off after collectin guinea pig grass, but couldn’t find if they’d got any carrion they were feeding on.
(All Friday morning)
Simplified:
My table tennis mate is picking up conkers (chestnuts) for me.
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