2023-10-15 Sunday - recovery?: Still stable at “82”% exhaustibility, able to use more moderate energy today. RR/supp changes?: Seems OK. VLDN?: up to 0.25mg from 16th on.
What … worked / went wrong … today:
Managed quite a lot without backlash - moving bricks in the garden, but knew when to stop - got them up and piled up, but then left them there for next time.
Habit encouragement… :
Time (= stress) management: Blog earlier 
, forums less - yep, jump off hamster wheels () - could have been better, but a few times I did.
Self-treatments: Jaw - found one of the probably last tender spots in the dent behind the ear, but the whole jawbone is now OK, wall sits - well horse stance 2x15’’ actually, balancing () - not sure, supps by 15:00: 
- no 19:00 () and just for one day cos I’m using the new boxes with small compartments and want to see how that goes, back by 16:00: - did them but can’t remember when, capsules by 17:00 - just what was absolutely necessary, need to do TMB (betaine HCl) and carnitine.
How was I today?: Feeling 80-90%-ish (), energy today (, relatively), sleep Saturday night , sleep Sunday night (yeah, not quite perfect yet, but hey, who’s complaining).
Today working mainly on … time management , better self-treatments , RR (), energy, esp. via VLDN .
VLDN
Dosage: Oct 1st ~0.07mg, 1st 21:00: 2nd 22:30, 3rd on ~20:00, 8th 14:20 0.125mg, 9th-15th 10:00 0.125mg, 16th 0.25mg.
VLDN 
for:
- Energy up from 10% to “18”%: for activities - did a lot today, not that slow, more like moderate, walking: up from 5’ to 30’ - I’d think so, listening: up from 3’ to 15’ - managed half of a service by multi-tasking/distracting, I keep trying, stiffness - still good, shorter recovery times - still good, all constantly . But
: still yellow/white face and black eye rims. - Pain: overall Ache - still quite good considering everything I did, local: lower back - none, less - yes, hangover - not much.
- Muscles: eyes = vision () - OK-ish, bladder: pee frequency & urge () - may be improving.
- Sleep (taking it in the mornings): feel better in breaks, waking up better, more awake - .
Nothing any more, only as ever needing to “curb my enthusiasm”.
How to continue: Increased dose, but avoiding strain by only using half the extra energy I have - kept the speed down. Mornings better? - yep.
RR: HIGH BP PERIODS around 4h/wk, night dip 30%, sometimes 10%, measuring (✅) a few times, research? ✅, actively trying to decrease? (✅) - using measuring as bio-feedback as well as trying to compare the reliability of measurements across various body positions, which is a bit fake, cos it varies so much anyway.
1) Since VLDN Oct 1st: PEM VS. PPA: post exertional malaise when I try to use the extra energy (✅), hardly post postural ache ✅. Stiffness ✅. TT 3:1 (moving 20%, talking 20%, counting 0%) ➔ 80%/3 (✅), gardening/moving ➔ 80%/3 (✅) - good, did a lot, talking 15' ➔ 80%/3 ❌ - didn't talk much - may be improving, music 15' ➔ 70%/4 (❌) - bit better. White lips80% (❌). Exhaustibility "82%" ✅ and sleep ✅ - 8h14, up 4x (86'), click for details:
EXHAUSTIBILITY today: “82%". 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 "6h rest", 2h very slow, 2h slow, 5h30 medium, 30' quick
SLEEP (click for details): 8h14, up 4x (86'), almost all deep, but sometimes too tense from too excited garden thoughts. Slight top headache from 5 on, nostrils 0%, but dry hands 30% cos of washing hands more, so cream. ✅/❌, everything else OK ✅/❌, 80%/2 ✅, ➔ getting up: 80%/2 ✅.
Sleep 22:15-
23:25 60’ 6 fl30’ → tense cos of geranium video making me focus too hard on balcony plants in winter
2:39 6’ 2xRR
5:15 14’ 5:20 jaw dent. headache (top of head): 104 standing, 115 sitting arm up, 121 sitting arm down, 116 (5:24, sitting arm up) 124 (standing 5:26)
6:49 6’ slight headache still, so 70%/2, nostrils 0% airing and blinds up a bit to stop windows misting up (not heating yet). dryhands 30% cos of washing hands more, so cream
-7:55
Sum: 1h45+7h55-(60+6+14+6=)86’ = 9h40-1h26 =
2) Watching "monthly" TRIGGERS, esp. of exhaustibility. Excitement (= stress) (✅): Feeding up the guinea pig after it'd lost weight and didn't seem to want to eat was stress, made me forget my own meal, my appetite hasn't been good the last few days, but then I remember to eat a glass of beans with yogurt, I always love that. Wife had a go at me in the evening cos shattered after the last weeks, doing too much, having to work on a Sunday and cos of worrying about our guinea pig who I only fed up for 1h instead of 2x. Click for list, incl. Sept summary added Oct 2nd...."
(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%.
Made me stop cryotherapy/acupressure and acupuncture from Dec on!
(2) Jan: TCM recommendations for a few weeks
(3) Feb: ~3% of levothyroxine (T4) 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%.
(10) Sept 4th bladder exam 3 days of ‘screaming’ while peeing (again 18th: seldom stabs few days), then a UTI and recurred for 3 days each, 22nd bladder pain and “2nd” UTI. 12th: CoV-type symptoms: fluey Ache, cough (recurred 18th a few days), belly discomfort, feverish, temperature till 16th, up 11x that first night, moving difficult. From before 20th: binge work stress. 21st: feverish, histaminey, 22nd: severe pain in right upper abdomen for a few days. 24th: felt ‘ill’ and realized I couldn’t hear music any more. (27th: New GP OK.). 18th: stopped CVD meds again for the time being. Oct 1st starting LDN…
3) DOCS: Last update Oct 11th: GP#2's office checked back about onco, GI & bloods. Oct 9th: Pulled cardio appt on 23rd forward for bloods. Oct 1st/2nd: Get uro for lump since bladder exam, get dentist for filling fallen out again on 30th, get liver bloods checked by cardio on 23rd, cos wife says my face is a bit yellow (B3 risk). 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 (✅)) - swishing with salt water now helps dry mouth with no side effects ✅:
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: 1x/m - 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: 1-3x/m - Sep 30th, (25th,) 16th, 11th. Aug 31st, 26th & 8th, July 23rd & 16th, May 31st, Apr 4th.
Last focal seizures: Sep 19th?? 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: 1-3x/m. Generally, mindfulness to be extremely careful and stop eating, spread supps & meal (length up to 2h), whenever there’s the slightest pressure. Sep 30th: sweet potato. (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 Oct 1st: LDN! - starting 0.07mg in the evenings, 9th: 1.25mg in the mornings. Aug 6th: 40 supps, 435€/m +20€/m cps. Last changes see before Aug 22nd.
SELF-PHYSIO: Always OK, see before Aug 22nd what I now always do when needed. Jaw-joint end of Sept.
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, 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
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10014929: “the use of a statin can enhance blood pressure control and decrease 5.4 and 3.2 mmHg of SBP and DBP, respectively, after 3 months of treatment”. Hmm, should I start again after all…? They also say Silymarin, omega-3 fatty acids and niacin as nicotinic acid decrease blood pressure as well as lowering lipids, which I have increased, except silymarin which I could increase from 1 to 2x.5g/d it says in my supp table, I’m only taking 1x.5g.
I came across this study in my notes cos of my wondering if nicotinic acid raises or lowers BP, cos I thought the flush might be bad for blood pressure. Turns out if at all it lowers, so that would mean I can increase the amount of that again too, up from 0.5g to 1g with the 2nd meal like witht the first, but not in the evenings cos of sleep and usually eating much too late.
Quality of life: 85%
Lessons in self-care:
a) Kept speed down despite too much excitement to get more things done.
b) Once I realized my wife was in a bad mood after work I got the hell out of the flat down into the garden in the dark, ate a little at least, and discovered the bank vole in the feeding box… I knew I wasn’t the main reason and that it was daft that I didn’t try to feed Harley up more often, but I was in too many hamster wheels and she hadn’t written it down anywhere, I’d done everything she did. She shouldn’t expect me to remember everything just because I often do, I tell her that often enough.
Reasons to be cheerful:
a) Plant life:
aa) I recently coaxed a wild plant out of my meadow grass by bringing up its leaves and pushing the grass to the side. That made it really “proud” and is now showing the beauty of the leaves. So now I’ve done and am doing the same for other plants too, whilst considering which is more important for beauty, but esp. for wildlife.
b) Bird life:
ba) After the geese the past week now the cranes have decided it’s getting nippy and time to take time off in Spain and the south of France (ours here seldom fly down to Africa).
c) Animal life:
ca) Found out in the late evening why the hazelnuts I’m putting out for the squirrels end up opened in a small cardboard box in the bird food boxes with a small hole that was supposed to be for bird food. Couldn’t imagine the squirrels doing that… There was one heck of a scratching noise and I could quietly come closer and film with light on some small creature with a furry white belly and tiny paws at work inside - I spose our bank mole. Outside under the firethorn another was just as loud, but not as bold. Can’t say the bank mole is particularly shy anyway…
cb) A hazelnut in a hole in the lawn in the daytime will have been Squirrel though. S/he didn’t have time to close it up, so I did that. I used to find it annoying that hazels, cherries, walnuts, beeches and oaks come up ever so often, have tried to replant them, but now I know guinea pigs eat them it’s like an invisible veggie garden.
d) Plant, bird & animal life: -
e) Human life:
ea) Colleague wants to visit me on Thursday.
eb) Wife apologized in the morning for having a go at me.
Simplified:
a) I usually have a hell of a time getting out of my drainpipe trousers, esp. with the long johns and 5 pairs of socks still on, I even often get a kind of small claustrophobic panic attack. But tonight I just pulled them off inside out by pushing them down and standing on them with my other foot, and then turned them back right with my arms - that took less than a minute altogether! 
b) I’m now putting my capsules for a day in one of 6 small boxes with 10 / 12 compartments each instead of before using tubs and pill boxes for each of the days lots. In pill boxes the compartments aren’t big enough and I’d need to buy several, a “week” for 1 day. (And I hate buying plastic stuff or anything new and got these off of my TT mate.) That does now seem easier, just I forgot to do it for several days, which is praps good cos I’m not sure yet how it’ll work out. I was trying to get my head around how to get the pills out of the compartments again without splattering the others all over the place, cause unlike a real pill box there’s only one lid for all. After thinking of and trying bits of cardboard, some kind of spatula, I realized just a teaspoon will do OK for the time being. Still looking for a way to just drop all the usually 20-25 pills for one serving into a tub. But maybe I can adjust to not use the tubs anymore at all.
c) Halting on my bike and waving cars waiting for me to pull over in front would have saved me a lot of energy…
d) Tired after back from the shops I realized putting the handles of my cotton bags over the stair handrail ends instead of putting the bags on the ground and having to bend down and pick them up again.
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