JayCS’s Fibro Blog

[JayCS]

2021-03-08, Monday

Sleep: 21:45- 23:50p 1:40p 2:20p (left eyebrow sore = trigeminal, why?) 3:25 hungry, so soy drink, mind active with work ideas, slight jaw ache, that was better with melatonin I admit… 5:20p30’ (Maybe the additional pain thru melatonin came thru moving less at night?) 7:00p.hungry(rice?)nose -8:00 = 10h15-55 =9h20 Maybe more dozing, but less pain, heaviness, feeling more in control than with melatonin. I think I’ll try switching it on and off tho.
Nap: 0, just a short flash of feverishness at about 15:00
Work: 8:45R78:50PR7/810:35=1h50 + SL20’ 17:50@17:55E18:05@18:10R718:35E19:15=1h25 = 3h35
Activities: Table tennis 3:1.
Pain: Quite OK, altho not resting once.
Gut: Quite good, despite a bit of heartburn at night.
Development: Got my job perspective sorted now. New era, it publicizes for everyone “how chronically ill I am”. 43% for the next 2 years.

Sort out

Suggestions of a neighbour('s alternative practitioner): Tetsonin?, Vitamin Logos, Sabalvit, Crataegutt, Strotrantus D6, Lymphderial, Laminine (all, FGF), D-Mannose (Uro), Cystus (Flu), Kardenwurzel (erregerbedingt), Carnosin (cell regeneration), Schisandra (cleans blood vessels), Mutterkraut (nerves), besenginsterkraut (heart), strophantin (heart, brain), borax (arthrose), she’s quite a bit off track tho, even suggested dowsing…

[JayCS]

2021-03-09, Tuesday

Sleep: 21:55- 0:25p15’ (sore throat: Marigold) 3:25p 5:55 7:20p20’ 8:00 21:55-8:00= 10h05-45 =9h20 and still fairly tired on getting up. All without melatonin.
Nap: 0
Work: 8:10R78:30E11:10 12:00exV12:10E12:30 16:30P17:10R7-17:20E17:25 5’E 4h30
Activities: Dentist’s for mouth guard. Table tennis 3:3 (wet and feeling 60%)
Treatment: Acupressure: ear went well and torso meridians. But didn’t last at all. Hope it’s set something going tho.
Hacks:
Tricks:
Pain: 4 of 7.
Gut: Good.
Diagnoses:
Development: 43% takes the stress and strain out of it. And my boss said she’s probably going to relieve me of the new area of work again after Easter, which is costing me a lot of time & stress now. That’s double relief!
In the last weeks and I spose months I’ve been wondering how to best to ‘measure’ how well/ill I feel. I counted bad, OK = moderate and good days. (OK is my optimism saying it’s not good, not completely bad.) Then I wanted to somehow count the hours, but somehow that didn’t work out. Inspired by the 43% of my present and future work load I today tried putting it into %. First I wasn’t sure, but it’s been working OK for a few hours. I’ll try to put it down now. Probably tedious to keep doing it, but praps there’ll be away to keep a bit of a hold on it.

80% 12:50 cycling to acupressure
70% 12:55 "
60% 13:00 "
70% 13:10 after cryotherapy
90% 14:55 after acupressure
80% 15:00 cycling back
70% 15:05 "
65% 15:10 after cycling
55% 16:00 after table tennis
50% 16:15 after cycling/shopping
55% 16:20 while sitting 16:40 tired?
60% after sitting/standing working (something like feverish, but *not tired??)
45% 18:30 while slow cycling/shopping. More jaw. Bit tired. Still very slightly feverish.
Around this till bedtime before 21:00

[JayCS]

2021-03-10, Wednesday

Sleep: 21:30 (with tooth guard) 0:05p 1:45p (out) 4:30 6:55 7:40 21:30-7:40=10h10-20=9h50, and still tired. So at night maybe 90%? but getting up hard means 80% “well”: stiff, pains, heavy, eyeballs aching, left knee pain. Nose didn’t clot: Why?
Nap: 16:45-18:15= 1h30 → 11h20! What’s that?!
Work: 8:00P-8:25E9:10 13:00P13:05 13:15exV13:20E13:40R814:50 15:00B16:00 18:20R818:55R7-10-20:45 =6h15
Activities: 11:30 table tennis 4:2, flare after. 15:00 work video talk lying/half sitting.
Treatment: 10:00 ozone, good after - till table tennis.
Hacks:
Tricks:
Pain: Getting up: stiff, pains, heavy, eyeballs aching, left knee pain. Ache & Pains 2 of 7. Ache after table tennis 6 of 7, going down to 5, then 3/2. After standing working in the evening after sleeping: forgot to twist-stretch enough, so had to do that more after, while eating (late).
Feeling well: 90% at night, 80% trying to get up, tooth & feverish after cycling 11:00 90% after ozone, 11:30 80%. 40% after table tennis. 60% after work, standing. 60% after conference, lying down, but very tired, which I could count as 40%. (Just told my wife and she said she’d call it 15-20%, like my pain scale, where I’d call 4 of 10, what other’s’d call 12. {Which is why I always say 4 of “7”, not for of 10, to give an idea of where my 10 is.}) 70% after napping. Stayed that despite working, till 22:00.
Gut: 100%. Thirsty. It’s become normal to put cream on before the morning to prevent any a-pain. Ate late 21:00, hope no heartburn/hungriness at night…?
Diagnoses:
Development: Not sure how to call the % - “feeling well” (as opposed to feeling ill)?

[JayCS]

2021-03-11, Thursday

Sleep: 22:20- 23:50leg pain-1:25(1h35) (-> doze) 4:50.10’ 6:35p-7:00 -8:25 10h05-2= 8h05
Nap: Hmm, let’s see after that night. Bit of work again and back to sleep? Nope. 0
Work: Early. 23:50R723:55R8-1:00 4:50R8.5’ 6:35R87:00 8:50R78:55P9:00R8-9:35 9:50E9:55R710:00 10:25R710:30R810:35E11:30 11:40P11:45 11:50P12:00 16:15E16:25 12:25@12:30 17:40-18:50 20’P 19:10E19:35 5E =6h10 End of the day completely narked, hating the new work area and yearning for it to end in 2 weeks - sure hope my boss is gonna find a way to get someone else to do it. 3h35+4h30+6h15+6h10 =23h30 this week already, that’s my total work load, but there’s still too much to do and I don’t know how to get it less. And I haven’t enough time to go shopping, clean the flat.
Activities: Table tennis 7:1 (after acupressure) Video conference at 18:00.
Treatment: Acupressure, which hadn’t done anything on Tuesday, except make clear, that I am not at 100% (like she’d hoped I’d be after the treatment…) Legs great, torso 70% after it.
Hacks:
Tricks:
Pain: Knee, elbow and slight back pain last night, bit of tooth pain whilst the mouth guard was in, hurts my cheeks a bit.
Feeling well: 50% before working at night, 70% after. Despite not sleeping much, woke up 8:30 at 90%, excluding some tiredness. 10:00 still 85%. 12:00 still 80%, but just down 2 staircases and back up took me down to 60% for a few minutes, then 70%. Stayed roughly that while cycling and while treatment (ankle and knee pains), during table tennis my complete legs were 95%, my torso went down from 70% to 50%, walking up the stairs to the flat got my legs down to 75%, and tired I think (mainly eyes aching a bit) after all that, 16:15.
70% from then till evening, despite frustration…
Gut: Good, despite eating late. But hungry upon waking up. Good all day.
Diagnoses:
Development:

[JayCS]

2021-03-12, Friday

Sleep: 22:15- (later, after/bc of listening to punk to calm myself down from bad temper due to work frustration) 0:05 cramp-pain in left calf under knee, both feet-arches hurting 60’. 1:45-work frustration. -3:40 4:00- OK, I give up, I’ve broken an extended release melatonin pill in two and taken it, this night is annoying to say the least. -4:05 7:20p 10’ 9h05-1h-1h55-5+10 =6h15 Good straight sleep for 3h after the melatonin and not as druggy as when I took the whole pill.
Nap: 16:50-19:00=2h10 → 8h25
Work: 1:50-3:35 grrr. I’ve got to change something, but I still don’t really know what. My seemingly good ideas have again not really worked out. Is this fibro, or is this me, too high expectations, is this the reason why I’ve got this -sickness ? 7:30E9:15 9:15R7-9:30 15’P 15’E 15’R7 4h30
Activities: 7:1 despite how I’m feeling and tiredness. I just need air to breathe and time for myself and I’ve been losing myself by working too much. Did my singing lesson after all, was refreshing not tiring. But I put off grandchild early this morning.
Treatment:
Hacks:
Tricks:
Pain: Mainly tiredness-pain, but tooth in between, and calf and feet in the morning, like at night, felt connected, the left calf led to the left foot hurting somehow. Stretching a lot helped.
Feeling well: Night: 70% apart from not sleeping. In the morning broken mainly from that, probably still 70%, or if I count it: 30%. Putting off everything that gets in my way. Still same. 19:00 after sleeping also.
Gut: OK, hungry at night from being up. Ate quite a bit.

[JayCS]

2021-03-13, Saturday - Yay! The whole thread disappeared but now back again, no loss!

Sleep: 22:45-1:02p/heartburn(2xgatri-)10’-2:05heartburn(")30’- 4:42p- 7:30p- 8:00 = 9h15-50 =8h35
Nap: Should I have tried, even tho I didn’t feel too tired, just to feel better?
Work: Trying to work out where I’m doing too much hasn’t helped: R7, R8 and E is too much, and trying to help others too much in home office is the problem. I should write down the working time per area, not per day.
Activities: Table tennis 5:3 (very windy). Short fast walk, wife shoved bike, in case I need it (suggestion of my acupressurist), I walked freely, at my limit, but felt good.
Treatment: Wim Hof’s Breath-Holding 11’ at 20:00 helped me feel a bit better, but still extremely stiff, despite twist-stretching, probably due to bad sleep last night.
Hacks:
Tricks:
Pain: Mainly back. The calf-cramp-type-pain went down after a lot of stretching yesterday.
Feeling well: 8:00 70%… after table tennis 40%. While/after working 65%. At 19:00 50%, wdn’t be good if I had to work live.
Gut: OK, expecting heartburn from a small ice-cream at 19:00
Diagnoses:
Development:

Work amounts Mo-Fr this week:

Mon 8:45-R7-8:50-P-R7/8-10:35=1h50 + SL20’ 17:50@17:55-E-18:05@18:10-R7-18:35-E-19:15=1h25 = 3h35 /
Tues 8:10-R7-8:30-E-11:10 12:00-exV-12:10-E-12:30 16:30-P-17:10-R7-17:20-E-17:25 5’-E- 4h30 /
Wedn 8:00-P-8:25-E-9:10 13:00-P-13:05 13:15-exV-13:20-E-13:40-R8-14:50 15:00-B-16:00 18:20-R8-18:55-R7-10-20:45 =6h05corr.(-10)
Thurs 23:50-R7-23:55-R8-1:00 4:50-R8-5’ 6:35-R8-7:00 8:50-R7-8:55-P-9:00-R8-9:35 9:50-E-9:55-R7-10:00 10:25-R7-10:30-R8-10:35-E-11:30 11:40-P-11:45 11:50-P-12:00 16:15-E-16:25 12:25@12:30 17:40-P!-18:50 20’P 19:10-E-19:35 5E =6h10 no, 5h40 -30’
Fri 1:50-!E-3:35 7:30E9:15 9:15R7-9:30 15’P 15’E 15’R7 4h30 /
Day-Sum: 3h35+4h30+6h15+6h10+4h30 =28h00 -40corr =27h20 corr

Areas
R7 Mo 1h05+15 Tu 30’+ W 1h40 Th 20’ Fr 30’ = 4h05 / +15’
chk R7 1h20 R7 30 R7 1h40 R7 20’ R7 30’ = +15
R8 Mo 40’ Tu 0’ W 1h10+35 Th 1h05 5 25 35 5 = 4h40 / +15’
chk R8 55’ R8 0 R8 1h45 R8 2h15 R8 0 = +15
E Mo 50’ Tu 3h10 W 45’ 20’ Th 1h40 Fr 3h45 / = 10h30 /
chk E 50’ E 3h10 E 1h05 E 1h40’ E 3h45 = 10h30
P Tu 40’ W 25’ 5’ Th 5 5 5 1h30 Fr 15 =3h10 / chk /
B W 1h = 1h chk /
SL 20’ = 20’ chk /
@ 5’+5’ 5 =15’ chk /
exV Tu 10’ W 5’ =15’ chk /
=24h45 / 2h35 hours missing. I hate that. No matter: Too much. Or not? Computed it in a table, 24h:30 comes out, and thought about it, it’s not too much!
(Z +20)

Seems still too much for R7, R8 and E? If the rest altogether is 5h and I sh’d be working 22h/wk, that means 17h, 9 for E, 4 for R7 and 4 for R8. Nope, wrong: Normal for a March-week’d be 25h, plus part time is always more than half, plus CoV means more time & effort, so up to 30’d be fairly OK, this is a tougher time of the year, round Easter it’ll be much less and Dec/Jan was much less too. So the problem is not that I’m working too much, it’s that it’s just too much FOR ME
Sleep: After
Avg. 9h10 ending 2021-02-27,
Avg. 9h05 ending 2021-03-06, 9h35+8h35+8h45+9h15+!7h40 (Thursday)+9h35+10h20
Avg. 9h10 ending 2021-03-13, 9h15+9h20+9h20+11h20+8h05 (Thursday)+8h25+8h35.

[JayCS]

2021-03-14, Sunday

Sleep: 21:30 23:50p.i10’ 1:20p.i20’ 2:35i25’ 4:10p 6:00p 7:55p 8:40 11h10-1h10**=10h00**. CBD oil 1 drop. Last time 3 drops were much too much, but the half-pill 1mg melatonin have encouraged me to turn these stones over once again. Now it worked fairly well, was still awake just as much (6x), but a bit easier getting to sleep again afterwards. Tired eyes upon waking up, which perhaps will be harder on live work, but I’ll try it. Tooth guard didn’t hurt the toothache, just a bit of sharp pain in my cheek on the other side. So do I need to sleep more, after all?
Nap: 0, only a bit sleepy.
Work: 2h50 (in TabCalc).
Activities: Zoom service half-sitting/standing, bit of a strain, esp. socializing 20’ afterwards. 3’ workout OK. table tennis 4:4 (wet).
Treatment: Cold shower as usual. Memo: Breath-hold.
Hacks:
Tricks:
Pain: OK despite feeling a bit ill & very stiff… left foot arch & back, still. 1:25: Heavy legs from the CBD oil, no further problems, not druggy from it (as yet), but no sleeping problems either.
Feeling well: 9:00 75%, 9:30 90%, despite 1h of self-care and housework… 12:00 80% from then on, except 70% for an hour after table tennis.
Gut: Bit of withheld wind before bed, probably cos of a few mushrooms at midday. Bit of pressure and bowel movement at night, probably due to the drop of CBD oil. Or is it the ice cream from the evening?
Diagnoses:
Development: Energy, cos it’s Sunday? My I-don’t-need-to-run-day?
Gut (just sometimes heartburn) and pain (just sometimes feet, back) aren’t the problems in the last 2 weeks, got a grip on those 2. It’s Ache & energy-fatigue that are taking me down. Sleep I’m not sure, since I’m always above 9h on average. The twist-stretches seems to be helping, breath-holding seldom seems necessary, but maybe that’ll help too. Acupressure and ozone haven’t been helping too much, but OK. Pressure rises during the week and falls of at the weekend.

[JayCS]

2021-03-15, Monday

Sleep: 21:20 (1 drop of CBD oil, mouth guard) 22:20p 23:30p 24:20p 2:25p 3:50p 4:55u30’ dose, hungry, stuffed nose a bit, mouth guard hurts a bit 7:10w -8:25 but tired & heavy limbs from the CBD oil 11:05-1h= 10h05. CBD oil: up 7x, but heavier upon waking than at night…
Nap: 12:00 wish I c’d. 16:20-17:05=45’ → 10h50 Still dead tired, but cdn’t really sleep.
Work: Only 2h20 in tabcalc. Live: Burning/feverish, tired & shaky after 25 mins alone, 45’ talking to/with others.
Activities: Cycling/train to & from work. Table tennis 3:3, the last 2 games I was sleeping playing, something probably only I can do… My mate joked “ill, sleeping, but suddenly slam, point!”
Treatment: Feel like breath-holding and resting, but: Acupressure. Focussed on arms, but didn’t help, hurt more after and during table tennis. The first of 3 things she wants to try. Whereas my legs were a lot better, more energy, like last time (Thursday). Still I cdn’t cycling that fast from there after, due to my tiredness.
Hacks: Twist-stretch and leg-stretches.
Tricks:
Pain: 12:00 Burning/feverish, tired; shakiness & slight pain building up in lower back and legs. 15:00 still tired after acupressure. 16:00 of course even more tired = feverish, heavy, after table tennis, altho muscles were/are fine, only sporadic pains. Pains are usually only sporadic, that’s the part that’s got much better. Thighs hurt while napping until I changed position.
Feeling well: 8:30 70% 12:20 50% for the remainder of the day.
Gut: Good.
Development: Table tennis’d go down more if I had to go to work more, exactly the same problems as in Nov/Dec. Despite pains being down even more than then.

[JayCS]

2021-03-16, Tuesday

Sleep: 21:05- 22:50p 0:30p 2:20p 3:05i15’ 3:40i35 5:35p 7:10p -7:30 10h25-1h15= 9h10 (8x) OK-ish, tedious having to get up once an hour once again.
Nap: 14:35-15:25= 50’ → 10h 16:00 tired tired tired. Sleep again? Nah, cold shower at 18:30.
Work: At home: 5h10.
Activities: Table tennis about 3:3, a bit surprising, don’t feel quite that bad, but all a bit different today (e.g. stood around getting cold before and in between).
Treatment: Various doc appts. shoved around a bit, so ozone tomorrow.
Pain: Torso after table tennis. Left foot arch still sometimes.
Feeling well: 7:30 80%. After working 2h20 70%. 12:00 45% after table tennis. 14:00 60%, OK-ish, but very tired… 18:00 Tired and getting stiffer 21:00 75%, OK for evenings.
Development: Twist-stretching only necessary in between on quite a lot of the last days. Gut good too.

[JayCS]

2021-03-17, Wednesday

Sleep: 21:45- 0:30p 2:00p 3:40p 4:00i60’ 5:20i15’ 7:40p -8:45 = 11h-1h35= 9h25
Nap: 13:25-15:20 not exactly sleeping, but eyes shut in bed and time flew by… 1h55 → 11h20
Work: I’ve checked out for sick leave tomorrow.
Activities: Put off grandchild for this week too. And left table tennis today.
Treatment: 14th ozone treatment didn’t help at all, so we’re ending it.
Hacks: Breath-holding?
Tricks:
Pain: Elbows and stiffness a bit, feverish, tired, weary and resigned.
Feeling well: 4:00 70%, despite feeling awake, 9:00 70% 9:50 60% 10:30 50% 11:25 40% 12:00 30%. Taking sick leave for tomorrow. 20:00 still 30%.
Gut: Bloated the last few evenings: After soy yogurt plus a bit of cheese? Used to be a problem.
Development:

• 4:00 Just had a look if ozone 2x/w had improved sleep, but not the 1x/w with increased concentration lately. I can’t find any improvement, doesn’t look particularly good at the moment.
• Toothache, jaw pain have remained under control, but the mouth guard makes my mouth sore, increases the pain of the dryness at night.
• Nose clotting has stopped for quite a few days now, since the 10th, apart from the 15th. Still don’t know why.
• Ozone doc can’t help me anymore. He just recommended a 19th Century natural health practitioner (“Kneipp”) who is still very popular here, as well as old-fashioned psychoanalysis, but as far as I know I’ve exhausted all of the 5 tenets of Kneipp he mentioned by everything I’m doing already: 1. cold showering as hydrotherapy, 2. herbs as phytotherapy, 3. table tennis, cycling, stretching etc. for exercise, 4. vegetarian wholemeal diet, as well as Mediterranean diet & elimination diet for nutrition and 5. autogenic training etc. for “balance”, healthy mind, etc. And I’ve been checked for PTSD and depression, worked on all my old issues.

• better get a CoV-check tomorrow

[JayCS]

2021-03-18, Thursday - 11h40 sleep! First sick leave since Nov. What’s up? CoV-test today

Sleep: 20:00- 21:45p/sore throat 23:25p15’ 0:40heartburn slightly 3:25p 4:45p 7:30p 8:05hungry15’ -8:35 = 12h35-55 =11h40, almost all real sleep.
Nap: not nec.
Work: Sick “leave”. Worked 1h. Keeping it down tomorrow and next week too.
Activities: Only cycling CoV-test. 55’ meeting in the evening.
Treatment: Acupressure ear and chest muscles helped. Suggestions: ginseng. Not cycling over cobblestones, getting a new kind of bike-saddle. Taking Vit. C, B and Mg again, whilst the sun & warmth hasn’t come back yet.
Tricks: Didn’t manage back exercises properly yesterday, but curling up backwards in bed (cobra) stretched my back enough to partly balance the back ache out.
Pain: Quite a few single pains, due to the generally increased Ache, but can get them down quick.
Feeling well: 50% at night. 9:30 65%. No temperature/fever at all (36,5, yesterday 36,4°C). 13-15:00 during acupressure: 80%, after standing in the cold back down to 65%. Remained that.
Gut: Stomach/gut rumbling a bit last evening, but only slight wind, no diarrhea.
Diagnoses: CoV-test negative.
Development: I’ve realized that the “40%” work is actually more, because part time is always “more than half”, plus CoV makes things harder, so it’s really 55%. That’s why I’m working 28h/wk instead of 40% 20h/wk of the 50h/wk I’d normally be working in March. Relieves again to realize it’s not me.

[JayCS]

2021-03-19, Friday

Sleep: 21:10- 23:05p20’ 2:00i.p15’ 2:45i.6.25’ 6:00p 7:10u 7:35 10h25-1h10= 9h15
Nap: I think I can count 20’ in the MRT → 9h35
Work: 1h35. Then back to bed. Music, peaceful bored me, needed some post-hardcore emo.
Activities: Doc’s put me on sick leave. I spose he’s right. Cycling to the MRT with eyes partly half-closed. Music production lesson lying down was OK too. Still feel like table tennis, let’s see how much… 4:0 - how come I always play better sleepy relaxed than wide awake?! Any clue there? No muscular problems at all. But grocery afterwards strained at the check-out.
Treatment: No problems doing breath-holding 11’ at 11:30, but noticed slight earache, eyebrow-ache (stress-sign), remembered focal seizures at 6:00. Ask GP: sick leave next week? Yep! MRT was great: I love the sounds (my wife does too), I could drowsily trancily dream, the mask prevented the usual sore throat and feeling I’m getting a cold. Went by much too fast! And: the tumour is still sitting comfortably. I asked the doc, he agreed supps might get me back up, we were surprised at my blood pressure: 150/90! Yesterday at home 120/80, pulse 60. 19:20 123/72 64.
Pain: Nothing much really. But pretty stiff, incl. neck, so doing a lot of twist-stretching. And just staggering, eyes feel half-closed, wet.
Feeling well: 8:00 50% can’t wake up. 10:30 after 1h35 home office 30%, 12:00 after breath-holding and showering still dead tired, but 60%.
Diagnoses: No pains, not really Ache either. Is this CFS coming up?

[JayCS]

2021-03-20, Saturday

Sleep: 20:50- 22:05p 23:50reflux30’ 0:50reflux-med5’ 1h15w40’ 2:20: melatonin, 1g 5:45p: yes! 8:05p: double yes! 8:30 11h40-1h35 10h05. 9:30 92/64 56 Must be wrong. 23:50 114/71 58 9:32 99/64 54. OK… 9:34 114/72 58 - getting there… but eyes still sort of half-closed. Nose was only clotted once at night after using hot water bottle. After I put it aside it opened up…
Nap: 0
Work: Nope.
Activities: Table tennis 5:1, totally relaxed, totally precise shots. 4 games no problems, the last 2 were getting to my muscles a bit. Sh’d I get used to this tiredness? But I got a sort of old man shuffle in between. My instincts are quick, but my mind isn’t. Group-cycled and cycle-walked a while, then rested.
Tricks: Started trying to open or close legs to get the p-pain even better.
Pain: Bit in back from sitting and lying down long.
Feeling well: Same: The dead-tiredness takes the 70% down to 30% the whole day.
Gut: reflux 23:50, after late dinner, with a bit of a sugar/cinnamon mix in natural soy jogurt.
Why the heck did I forget not to do that? 5:45 Still belly pain & wind. Heat? How water bottle helped a bit.
Development: Sh’d I try melatonin for a longer stint now I’m off work? (It will probably prolong the dead tiredness, but keep me relaxed…) Sh’d I put off the heart exams this week? How’m I sposed to am exercise ECG? I just had no problems overtaking an e-bike for 2 minutes, but then I had to step down, on the exercise ECG I probably won’t be able to give full throttle to show what I can actually do. But maybe wait a few days, the weekend at least.

[JayCS]

2021-03-21, Sunday

Sleep: 20:50- (123/75 65) With 1 duvet and 2 more blankets over and less on, to test how I react to weight 22:20 Not favourably, I feel my lower back doesn’t like this. 22:50 nope 55’ +15’ 0:30 Since the pseudo-weighted blanket didn’t work, and has stopped me sleeping, I’ll resort to Plan B, a 2nd stint of melatonin, this time 2mg extended release. Uh-oh! 1:05 Maybe I sh’d’ve split into 1mg… grrr6… 20’ 3:00 ah, it’s getting there - more on my head than my body, but still… 4:15 strange dreams, causing strange sensations 6:35 don’t feel as numbed by the 2 mg melatonin as last time, and not even as numbed as without of late, altho I only took it at 0:30…
7:50 still not numbed, c’d get up fairly well, but c’d also sleep more, so I do: -8:25 11h35-2h05= 9h30. Heavy eyes, but not head or body. I was hoping for a “paradoxical effect” (better sleep this time, better awake after) of the melatonin on my new dead-tiredness, is this perhaps it?
Nap: 0
Work: 45’, OK, but got a bit angry once, got to watch that.
Activities: Zoom service OK, % very down after 20’ very slow yardwork. 17:00 table tennis 18:00 live service. 19:00 bit of work.
Hacks: Weighted blankets will not work for me, cf. above. Since fibro my body doesn’t like being cuddled any more (used to be the opposite) and feels oppressed by the weight.
Pain: Still pretty good.
Feeling well: Better, despite a difficult night. 9:00 70% or incl. sleepiness 50%. 14:00 30% after 20’ yardwork 15:00 after cold shower 60%. Stayed around 60/50%, even to the end of table tennis.

[JayCS]

2021-03-22, Monday

Sleep: 22:50- Oh dear, bit late, got carried away (melatonin at 20:00, thick blankets only on legs) 2:10p15’ 2:35.6.20’ 4:30p.i20’ Threw thick blanket off of legs, but OK till then. 5.15p.hungry.ate10’ (melatonin?) 7:30p/heartburn. Did I end there or was it at 8:10?? i.e. 8:40-1h05 or more? Trying to get started into the day, but it’s not working out. Sleep again?
Nap: 11:00-11:30 11:40-11:45 = 35’ 18:30 Dead tired.
Work: 10’
Activities: Table tennis 6:0.
Feeling well: 9:00 60/30% 13:00 80% after cold showering and cycling, 15:00 80% after acupressure.18:00 80% and 30% → 19:00 30%, feverish-achy-tired.
Treatment: Ear, neck, chest, but also stomach area → feels flexible. But more energy cycling on the way there than on the way back…
Pain: 1 of 7, unless I move ;-D, bit of stiff pain 3 of 7 until acupressure, then really down to 1 of 7.
Gut: 2:10 Stool, and slightly nauseous (again), also before sleep - is that the melatonin? Last time I hard lots of heartburn. Looked it up: Yes, can definitely be that. 7:30 heartburn a bit - that also.

[JayCS]

2021-03-23, Tuesday

Sleep: 21:05- 0:05p 1:20 (slight heartburn, slight headache, but 120/71 57) 20’ 3:45u5’ (robin singing) 6:55p/nos 123/80 57 8:20p 8:50p 9:10i60’ 10:20 13:15-1h45 = 11h30
Nap: 0
Work: 10’.
Activities: 12:00 Table tennis slow start 0:2, then suddenly 4:2. 15:00 Tooth cleaning.
Feeling well: 21:00 30% 0:05 30% 3:45 50% 10:00 30% (dead tired etc.) 11:50 25% shaky, slightly feverish, still no pain, not really unwell, just strange, wondering how table tennis will go: 13:20 pretty feverish, altho not really feeling tired and no myofascial torso pain. Just from overcoming/overdoing the shakiness before, I suspect. 15:00 50% 17:00 40% 18:00 60%, waking up. 19:30 melatonin, still fairly awake.
Treatment: After 2mg melatonin tonight, my heartburn was OK. I slept 11h30, and had difficulty getting up, but maybe I needed it after yesterday night’s fiasco. Slight headache and nausea are typical side effects of melatonin tho…
Pain: 21:00 5 of 7. 1:40 3 of 7 slight (heaviness, headache, may be due to melatonin). 11:00 Achy stiff 3 of 7. 17:00 after dental cleaning still, but better at 18:00
Gut: 0:05 sort of heartburn. Soy drink. 1:15 again.But melatonin (produced in the gut) apparently decreases GERD / heartburn / reflux, acidity by reducing the effect of pepsin! So where is my heartburn coming from?

[JayCS]

2021-03-24, Wednesday

Sleep: 2mg melatonin at 20:00 21:15- 22:55p 1:25 (no headache, slight nausea & heartburn & bowel mov.) 4:15p realistic dream of having to prepare for an exam, uneasy stomach. robin → ear plugs. 5:35-45 hot flush, tooth ache, burning stomach → muesli → tooth ache more (, achy eyes), feverish, bow.mov. 6:00-6:30 burning stomach → Gastritol and Gastricumeel -7:20 10h05-1h= 9h05
Nap: 16:25-17:20= 55’ + 17:30-18:15=45’ → 10h45
Work: 2h.
Activities: Table tennis 5:1, first fully agile, then a longer rally hurt my arms - now I know why table tennis works. 18:40 carried an old mattress.
Feeling well: 8:00: 90%, but feels like skating on thin ice. 9:30: 60% after table tennis 12:00 60% 14:00 60/70% while and after working a bit.16:15 50% Very tired → nap 17:30 50%. 18:30 50%.
Treatment: 8:00 24h-blood pressure & 24h-ECG.
Pain: Tooth ache, probably cos of the dental cleaning yesterday, cf. diagnoses (canker sore?).
Gut: 1:25 slight nausea, heartburn & bowel movement 4:15 uneasy stomach 5:35 hungry & bow.mov. Hungry even after herbs & eating, but better after hot spelt cushion.

OK, Melatonin side effects revisited:

“In rare cases it could give you a sore stomach , but this would more than likely be due to taking too large of a dosage.” (Melatonin for Acid Reflux – Is it Effective? | Wipeout Reflux)

And this is all from https://www.womenshealthmag.com/health/a19611716/melatonin-side-effects:
“Nausea, constipation, and an upset stomach are all common reactions to medication, and could come with taking melatonin.”
The biggest side effect that comes with melatonin is actually grogginess. “It’s like a hangover,” says Salas. That feeling of grogginess or not wanting to to get up is something that’s often associated with sleep aids. “That’s just really the nature of the game of promoting sleepiness,” she says. “In some individuals, the sleep effect can hang around in the body a little bit longer—their body may not process the supplement as quickly, and so they’re still experiencing the effects when they wake up,” says Salas.
“Your body naturally produces a surge in melatonin around 7 p.m.” “That’s why it’s really meant to be taken at sundown, to help boost your body’s natural production and send your brain the message that bedtime is coming,” he explains. “If not taken properly, it can actually make it harder to sleep.”
“The ingredients in a drug or supplement can change—even what’s holding the tablet or the capsule together—and that could cause irritation in your GI system,” says Salas. She often warns her patients to avoid buying melatonin in bulk until their know how their body is going to react. “You might have GI effects with one brand versus another, so it’s worth waiting to see what happens before committing to a specific supplement.”
“When people take a new drug or supplement, prescribed or not, their bodies may react differently and headaches are a typical response to that,” says Salas.
Timing matters here because if your body isn’t on the right sleep schedule (i.e. you’re taking the melatonin late and still waking up early), you could end up waking up during deeper REM sleep, which would leave you feeling headachy.

More from: Dangerous Side Effects of Melatonin You Must Know About (not well written tho):
One of the side effects of long term usage of Melatonin is weight gain in the body. (cortisol also.) Takes 15-20 mins to kick in, so take 20-30 mins. before.
To get drowsiness down in the mornings, I take it a lot earlier. High blood pressure, constipation and stomach cramps are here said to usually come after 2 years of use, not 2 days…

Here "Side Effects Of Melatonin: 8 Groups Should Avoid Taking Melatonin - Terry Cralle and elsewhere is said that the amount in supps may often be up to 4x as much as stated, so careful changing products.
I’m taking prescribed 2mg, not supps, so I can trust the amount.
Digestive issues – when it comes to melatonin side effects, vomiting and digestive issues seem to be rather common. The onset of these side effects is generally reported right after people start taking melatonin. It seems that melatonin can activate the receptors in the gastrointestinal tracts, and in turn cause some digestive disorders.
Does that now mean I should continue taking it or not?

Cardiovascular issues – studies show that sleep medications and supplements containing melatonin induce arrhythmias and cardiovascular issues in patients who never had these health problems. There have also been cases of palpitations lasting for several weeks, as well as moderate hypotension or low blood pressure in children.
Whoopsy:I’m getting ECGs all today and tomorrow, plus blood pressure, so maybe I shdn’t take it tonight?

Restless legs syndrome – studies show that melatonin intake can worsen restless legs syndrome or the RLS. It can even play a role in the occurrence of RLS and aggravate the symptoms. The aggravation of the symptoms usually occurs in the evening or at night, when the melatonin secretion and effects take place.
hmm, it’s not really my unrest that’s getting worse, altho my psychiatrist has suggested I might have RLS or something similar, even tho his sleep lab tests didn’t show that

A forum with 5 pages of people reporting strong diarrhea and cramping!
Has anyone experienced diarrhea with Melatonin use?

Diagnoses: My dentist yesterday suggested the tooth ache might have been a canker sore/mouth ulcer (German: Aphthe). Just had a look what that means. Haven’t found anything white tho. And it’s hurting more and more again…

[JayCS]

2021-03-25, Thursday

Sleep: 21:20- without melatonin, in case it influences the heart tests. 21:55 cold water on tooth ache. 22:20 cold water, ice pack, Ache, p. 23:00 tooth-ache. 23:30i50’ 1:10 cold, tooth, p. 3:15p tooth slightly better, self-hypnosis helping a bit, 4:45p Song from a blackbird we’ve aptly named “Gregory-Gregory” → ear plugs 6:20p 7:30p 8:00 10:40h-1h30 = 9h10 The melatonin seems still very much in my body, that w’d support my idea that my dead-tiredness is a result of over-activation. At the same time, my gut survived this blood-pressure-gadgnet-noise- and tooth ache-stricken night, with a lot of dozing the first half, without having to eat, so it’s only activating my gut for one night…
Nap: 0, but feverish-tired at 18:00
Work: 4h - quite a lot, considering I was very tired.
Activities: Table tennis 17:00 4:2.
Treatment: 1 drop of CBD oil at 18:30.
Feeling well: At night with tooth ache at 5 of 7: 30%. With tooth ache at 2/1 of 7: 50%. Morning: 60%, mainly lying down working. Then hyped myself up with cold shower, stretching & some breath-holding for the stress-ECG: 90%. After it feverish and again at 18:00, but mainly around 70%.
Pain: 20:00- tooth ache fully fledged at 5 of 7, went down to 2 of 7 from 3:30 on. Tooth ache started again while eating at 16:00, worse after at 17:00 and during table tennis: Best try mouth guard during table tennis, like the dental cleaner recommended.
Gut: First OK, but then pressure in my lower abdomen. Problems off and on. Let’s see what switching to CBD oil again does to my gut, it was a problem too.
Diagnoses: 13:00 Stress ECG. Cardiologist (professor) said No problems: with melatonin, CK-MB of 8% (sports the evening before c’d be responsible), blood pressure of 220 during the stress ECG (<200’d’ve been slightly better), pulse of max. 130+ is OK for sports, blood pressure of 140 at 0:00 and 3:00 if I have reasons (did for 0:00), LDL of 65, lipoprotein a will always remain high, just keep LDL down like it is…

[JayCS]

2021-03-26, Friday

Sleep: (CBD oil 18:30) 20:40- 22:15p 0:35p(10’) dozing? 3:00p CBD starting to work more (eyes, bit belly?) mouth hurts → guard out 4:40p drowsy, bit heavy, but OK, tooth a bit → guard back in 6:50p gut OK (bit bloated), tooth OK (so better with guard?) -7:30 very hungry, but altogether better than after melatonin. 9h50-25= 9h25
Nap: 0
Work: Only a few minutes.
Activities: Table tennis 6:2, with a break after 4:2. 17:30 Grandchild plus 2.
Feeling well: Night: good, around 70%. 3:00 60% 7:30 Body 90%, but very hungry & very tired, so 70%. 8:30 Doc, Table tennis, contacting: 70%. 21:00 still 70%, 113/76 60
Treatment: Mouth guard in for doc and table tennis, since I got tooth ache yesterday then. Noticed tooth ache coming for a short time, but it quickly went down again. I’d had the guard in most of the night too. I want to do the breath-holding more, but I keep forgetting… 17:00 Done it now, just writing, listening to music and the exercise at the same time, not quite as effective.
Hacks:
Tricks:
Pain: Not much in the night, tooth, until guard. Guard helping in the daytime too.
Gut: Hungry at 7:30, but that might be cos of eating less cos of the tooth ache.
Diagnoses: 8:30 Angiologist: OK.
Development: I’m continually optimizing my self-care so I don’t overdo it at all or too much in these moments. My wife says I overdo it too often, my rehab-psychiatrist says it’s OK & right to sometimes do it. It’s an art, a bit like surfing - you gotta know which wave will carry you, and not break, get on and off at the right point in time and know when it’s gonna stop carrying you.

Surfer not managing to stay on the beautiful crest of a wave.

[JayCS]

2021-03-27, Saturday

Sleep: 21:45- 23:30u/i-1:55 Darn. Due to unrest in my back, praps from putting on more blanket weight on my legs? Cdnt solve by back- or twist-stretching I had to be up longer, then got too awake. 5:20 wow: some stint! But hungry now (why, from CBD?), hope soy milk is enough. Got lots to sleep now… 6:40p 7:30u50’ don’t feel like sleeping, but I’m only at 7h30! 9:00u1h05 = 12h45-4h= 8h45
Tally for this week: 9h30+7h35+11h30+10h45+9h10+9h25+8h45= 9h30 on average
Tally for last: 10h+10h50+10h+11h20+11h40+9h35+10h05= 10h30 on average!
Nap: Often felt like it, and definitely shd’ve but didn’t get round to it. If I had to work it’d be dangerous.
Work: 20 minutes.
Activities: Table tennis 5:1. No grandchild due to rain.
Feeling well: 70%. Very tired of course, after that mucked up night and ‘only 8h45’ of sleep.
Treatment:
Hacks:
Tricks:
Pain: Tooth in between, better with mouth guard than without, started when my wife started dancing around with me altho I wasn’t awake, pity really. But OK apart from that. Wore mouth guard most of the day, cf. gut.
Gut: OK, despite CBD oil. So go up to 2 drops tonight? Developing bloating without IBSD throughout the day has shown me that talking too much with the mouth guard in can become uncomfy, not just in the mouth!
Development:
I’ve said all this similarly before… but can’t be said enough:
After continually improving my life, especially my relationships, starting pretty low down in the scale of happiness and health, I had become happy and healthy. Now fibromyalgia has forced me to work (“for others”) less and “work” for my self, care and self-love more. And that’s I believe where I’m meant to be now, where God wants me to be. I maybe always felt I was re-inventing myself, because I kept changing much more than other people change. And even now with fibro I’ve tried and changed so much more in 15 months than other people manage in 30 years. But actually it hasn’t really been me re-inventing myself, I’ve been coming Home, finally done what the Call has being asking of me for a long long time. And been Getting the Power to do so all along, despite so many trials and tribulations.
“I Surrender”…
:***)))

Also said this before, same applies:
Whilst I do sometimes see fibro as a) an adversary and us as warriors or at least 2) a challenge to be mastered, but not as 3) a nerve-wracking relative or child which a pain psychiatrist suggested to me, 4) my favourite way is seeing and accepting it is as the real me, my own body, which is signalling that I have overdone it, having wanted to do too much for others over the years and not enough for myself. Not something that is going to be happy to win over me, but who will be happy if I become sensitive to my needs and self-care more. So I’d see it as a handshake 🏿 not just as one where we help each other as warriors but also where we help and come to terms with the various needs inside of ourselves, find a way of coping.

I think it’s important to develop and foster images such as these, so they work for us, they will then develop over time and experience and will depend upon whether we are managing to pace and find sweet spots or are overdoing it and then flaring…

It will seem unfair that we can’t do everything like we used to and everything that others can do, but as always in life comparing just gives hard feelings. The new target is to find the sweet spots and find these sweet spots sweet, i.e. enjoy, savour them. We don’t have to, but the more we do, the more we will enjoy and have a happy life. Luckily I did some “happiness training” and mindfulness before I got fibro and can beautifully use those techniques now… !