JayCS’s Fibro Blog

[JayCS]

Day 14, Sunday (Day 7 of Week 2 Working 40%)

Woke up 1.5h later… very pleased that 20 mins. had turned into 1.5h. Green-white face my wife said… a look in the mirror showed eyes that had experienced something bad.
Drink, eat, breathe… Bit better. Very shaky. Blood pressure 112/60. Hot & Cold shower? Brave! Helping. 132/75. Back to shaky, drained. Table tennis very low key, but won sky-high O.o Halfway thru a shouting guy smashed a window near us, so we were part of helping to catch him with 5 cop cars and 9 cops . Wonder what that’s now gonna do to me, even tho it was fun at the time. My scaTterbriAn is going ‘should have done this and that instead’, I really wasn’t up to much apart from trying to act as an obstacle so he couldn’t get away as easily.
Interestingly I’m feeling better, even 2 hours later, so my wife was right asking if table tennis might be the right thing… Praps I need to organize a daily cop chase… bit of spice in life…

Stinging a-pain: Pineapple 6 pieces yesterday? Or grapes yesterday and today?

[JayCS]

Meet our furry piglets Stuey and Harley…

[AussieMom]

@JayCS

Praps I need to organize a daily cop chase… bit of spice in life…

LOL - You do crave excitement - don’t you?! Sounds like you had a crazy day at table tennis! I hope no one was seriously injured

[AussieMom]

Guinea Piglets! JSC, they are adorable fur-babies! And it looks like they are very much loved! My daughter had hamsters, and we had to keep them in separate cages, but it appears that guinea pigs like company!

[JayCS]

Day 15, Monday (Day 1 of Week 3 Working 40%)

Sleep: Good, 9h, OK at first.
Work: Only really 1h. But really weary, it hurt as if beaten up, before during and after.
Therapy: Tried the leg-acupressure points on a hunch:
Acupressure very helpful She showed a meridian-ring horizontally and vertically around the torso for use in the mornings *after showering.
Activities: Table tennis 4 games non-stop, good, but good to rest after too. Can’t do cold showering because of therapy, but breath-holding 7’ 35’ grocery good too.
Getting off my bike can always end up with slight injuries take my time, however silly it looks…

p-pain: Upright relaxed stretching/yoga
Stinging a-pain: Grapes no problem, but pineapples and/or oranges.

[JayCS]

Day 16, Tuesday (Day 2 of Week 3 Working 40%)

Sleep: 8h, deep, only 2 breaks, probably due to acupressure, praps heating on. Went to bed an hour later (cos of choosing/buying keyboard-sounds from ending Cyber Week offers).
Started off hot after the deep sleep, could even leave both my hoodies open on the bike!
Weak, not fatigued all morning. Talked one-to-one 1h, was OK. Cold washed wrists. Stumbled again getting off bike. Took a minute or so to get off, missed train, tried back to work, realized it’s not worth it, so back and put my rain legs on over my thighs, nice and warm. Missed my 3rd hoodie for my behind tho, had to make do with some thinner cotton stuff.
Tried calve-acupressure-point, helped a little.

Need to ask acupressurist how far cold washing (e.g. thighs) is OK after successful treatment.)

[JayCS]

Cop chase: No-one was injured outside - but to the cops he kept repeating “my wife”, so I’m thinking his wife might live there and didn’t let him in for obvious reasons and she would then be very injured by this inside. Hoping I’m wrong. Yep, I do like a bit of excitement here and there… - BUT.
Guineas: Yeah, our little babies are very sweet. My wife spends hours a day with them (just wrote: my life - Freudian mistake…;). But they mean a lot to me too. Guinea pigs need their own company, the more the merrier, but they do like calm people around them, so they prefer my wife to me, with my music and quick movements, but I try to be careful…

[AussieMom]

LOL, I do suspect if you were an animal, it would NOT be a guinea pig! Maybe the Tazmanian devil - hahaha, but that’s not a “real” animal. I’m SO cracking myself up here!!!

[JayCS]

Day 17, Wednesday (Day 3 of Week 3 Working 40%)

Sleep Work Energy Cycling Breath-holding Table tennis grandchild
I’m very curious what the analysis will make of this…
Edit: Acupressurist says: only analyze in a flare, to stay positive.

[JayCS]

Day 18, Thursday (Day 4 of Week 3 Working 40%)

(Not quite enough) Sleep (wasn’t that tired in the evening)
(“Lots” of) Work with lots of breath-holding and cold wrists (water and air).
Quite a bit of Energy Cycling carefully Breath-holding 3x
Therapy Store (Table tennis too late)
Altho everyone saying it was cold yesterday and today!

[JayCS]

Day 19, Friday (Day 5 of Week 3 Working 40%)

Sleep
23:30! Mainly cos of ordering Christmas prezzies… a bit early for that I know, next week is time enough. Only woke up at 3:30, but then, at
6am (so dozing from then on)… :-/

• Calf-cramp left, has been better, but not enough drink
• Mme. Army Boots is back from hospital, bless her , almost died , it’s not sure yet why…
• Headache, like often of late, at night, from:
• low blood pressure - (that’s why I’m doing a 24h-blood pressure check from today)
• &/or drinking less (more’d be more of a bladder problem again but cos of the cramp too)
  Arnica cream & drink. Too late to cold shower (also best not after acupressure) so:
  7:30 hot water bottle and 2nd top to be able to drowse longer, developing another Bella-song-idea…
  Up at 8, tired, a bit shaky/weak, but with some energy.

Work & commuting - stressful, but OK Hard to get earlier trains: stop trying. Breath-holding better.
Energy OK first :-), after work weak
Cycling OK but slow
Breath-holding 9’ + 12’
Table tennis 4 games - OK, but Ache. Breath-holding
Cold weather (a bit above freezing point)
Store

Is late bedtime the problem today? I’m sure it is.
If my acupressurist says it’s OK to allow myself to go to bed later once in a while, esp. if I don’t feel tired that doesn’t fit if it has this consequence. Also I probably was tired, just keen on getting some things done, which uses cortisol (‘adrenaline’). If I had just sat around or read something I’d’ve fallen asleep I bet.
My wife said again as she says again and again she thinks my main problem always was and still is that I have a bad feeling for my limits. She suggests counseling or a ‘live’ support group. But I say I’ve tried 3 psychologists. She says: Try a 4th. I say I’ve talked to fibromites live, like in the rheum. clinic. I got a bit worked up, because she says and I know she sees I’m doing a lot for myself, but doesn’t see that I’m working like mad on my limits day and night.
My acupressurist said don’t think about things too much when they seem to be working out, that way they’ll remain positive. I again think that’s wrong, yesterday evening and today has proven her wrong. Arrrgh: Not helping!

Edit: Reminded my wife the morning after that this blog, plus talking 2x1.5=3 hours a week with my acupressurist (who has fibro too) during the acupressure is the best self-help group, a live fellow-fibromite and a pain-psychologist all in one.
And I’ll just tell my acupressurist that going to bed before 9:30 is just *necessary for me. (Once I have to get up for work at 6:30 in Jan, if I think I can manage 60%, I’ll have to go to bed at 9; unless she manages to reduce my sleeping time more, which is her aim, but which I’m skeptical she’ll manage that).

[JayCS]

Day 20, Saturday (Day 6 of Week 3 Working 40%)

Sleep:
Ended up quite good despite the blood pressure monitor* every half hour. I just enjoyed lying and dozing (11h), sometimes unrest, so cold showered 2’ at 4am: brilliant, time flew after that, great relief.
*I had it on a belt first, then freed myself off it, put it above my head, and even took it off for the shower.

Stiff, a bit weak and achy… wary of early 4x table tennis, and Ache of 5 of 7 after, but staying relaxed, with low blood pressure too, and 1’ cold showering directly after helped a lot.
Energy OK, better after cold showering :-D.
Cycling
Breath-holding
Cold weather (a bit above freezing point)
Activities: Table tennis cold shower , slow 1h walk: cold wash . 40 mins store: Legs better , arms & torso not. breath-holding better. Then Very Stiff, Achy, “Ill”. Cold shower: better for a few minutes. Best sleep. Small pains esp. in wrists/underarms Heat & arnica cream: a bit.

Just 2 thoughts for the analysis and work-decision: If I am ‘ill’ let’s say a third of the time, then work will take a part of the non-ill time and also probably increase my “ill”-time. Is it still worth it?

[JayCS]

OK, AM, I think you’re very right about not being much like guinea pigs - buuut I leave ferociously eating meat to the T.Rex Devil and similar creatures - that’s why Harley and Stuey like me - when I crack off a carrot they squeak and come to me excitedly, when it comes to eating, I’m one of them.
But what animal would fit to me more? I had a jackdaw for about a year (was injured), I really love them for their social life, partners for life, spend most of the day in small groups or just as a pair, but gather for the night, swooping around in swarms as brilliant flyers, and then cackle-tell each other what they’ve experienced all that day. I understand their language well.
And especially personality: ours sat on my shoulder and always wanted to play with me while I was working/typing, much like Bella, so I had to stroke ?her a lot to keep her quiet. Then her “hair”/feathers stood up and her head got twice a big and her eyes rolled with pleasure. Same when you placed a small lid on her head - she stopped moving and pretended to be a beautiful dignified princess.
She also stroked my hair and nipped my ears with her beak, unless I didn’t understand the hint that it was time to play, then she got a bit more decisive, which could get painful or bleeding, but then she got a small clip on the nose, sometimes a big one, depending on the pain. She also always loved to make herself useful and “help” with the gardening…
So - OK, I’ve changed my avatar now. The colour fits too. Black really, but a “slight” shimmer of silver when the light falls on it…

They do eat some meat tho...

, loving spiders as a very special Sunday treat, which had the strange effect on me that I lost my fear of spiders and react like a Pavlov-dog when I see a nice big one… - sorry, can’t help it, it’s true…!

[JayCS]

Day 21, Sunday (Day 7 of Week 3 Working 40%)

Sleep:
1:30 Moaning & groaning in sleep, “ill”/fluey, Ache. My wife woke me up; I thought I’d been awake; pity that she heard it; she’d tried to stay with me for a change, till then.
Stayed up a bit, 40 mins (cool air), then hot water bottle (for wrists (esp. right), arms, lower back, middle thighs (left) and overall comfort) 5:30 again as breath-holding & cold wash/shower hadn’t helped that much. Cold doesn’t feel right if I feel very fluey, I tried it out and it did help a bit for a short while all the same, but I’m not sure if it let me go to the stores longer, which was too much in the long run? Perhaps feeling very Fluey means shorten to 1 store, 20 mins, if at all, and use heat instead of cold?
Energy
Cycling
Breath-holding
Cold weather (a bit above freezing point)
Activities: Table tennis

Overview of the 3 weeks of working at 40%:
Day 1 “Ill” till acupressure
Day 2 OK
Day 3 Achy up to 3/4. Overdoing granddaughter & her mum 3h, plus cycling, after 4x table tennis.
Day 4 Achy up to 2/3, altho hard.
Day 5 Good
Day 6 Ill-Ache 2-5 (Bed much too late! Overdid table tennis)
Day 7 Ache 2/3
Day 8 OK, esp. after acupressure
Day 9 OK, dentist.
Day 10 Strangely normal, suddenly knackered, overdoing (belated backlash of dentist?)
Day 11 tough: Work & getting up, and Yucky at night (dentist?) No table tennis!
Day 12 Ache 6, No table tennis!
Day 13 Energy, but overdid activities (table tennis plus supermarket), Carols & Lessons. Weary.
Day 14 Looked bad, shaky, careful, better after table tennis & cop chase (but not sustainable, Day 13, 15 & 16 all the same kind of weariness, after big Ache, maybe all from the dentist.)
Day 15 Weary till acupressure
Day 16 Weak
Day 17 Good Why Good sleep, but that was Day 15 too. Praps acupressure needed time to work (didn’t overdo table tennis: 3 games, plus granddaughter: 2h, plus 2x30mins slow cycling).
Day 18 Energy, altho hard work day. bed much too late!
Day 19 Energy, weak, ache, work stressy. From Bedtime Day 18?
Day 20 OK went bad: weak and Achy 5. From Bedtime Day 18? Again bedtime too late.
Day 21 Somehow not good, not much energy, not much appetite, sort of ‘ill’.
40% work: 6 good, 12 half-bad, 2 bad = 40% bad again, or 70% not-good.
20% work: 40% bad days, 68% not-good. Roughly the same.
0% work: Not sure. Table tennis 6 with breaks was sometimes possible. Colder now. Quite a bit has changed, I’ve improved/coped with so much. I don’t think it was noticeably better then.

Hope is near:

Pinpoint

dentist (praps 6 days this time, after half a day OK, praps because of being careful)
Remain careful, but cold & breath-holding before, could remain till 2x acupressure.

Late bedtime
Even if I know I could praps get 9h of sleep and the acupressurist says it’s OK once in a while, going to bed at 12 is much too late, 11:30 much too late 10:30 much too late, 10 too late for me, also I need to prepare for dentist next week and working more and earlier for January (and Thursdays anyway) : Go to bed at 9

Overdoing by chaining medium activities without breaks
: Only one activity per day additionally to table tennis, best with a break (but Day 17 was OK without a break, praps because I shortened both and took it easy)

Also
Remember
Prioritize more again. All very well that I’ve been fibro-reading a lot and paying off my mail-debts for hours a day, but that’s enough for now, none of this is important enough.
New Acupressure-trick: Stimulate both whole body Meridian lines after showering.
Old trick: Activate the weary-leg points more, 2-3x a day.
Even older trick: Activate Cortisol point in the ears for more energy.

Tell acupressurist the joint and thigh pains have come back/got a bit worse at the moment.

Not very good at all today - stiff, ill-feeling, achey. No sense in anything except resting? Praps the cortisol point cd’ve helped, the vertical meridian only did a bit.
Managed 4x table tennis very leisurely, took my bike for our walk so my wife could walk faster, but nothing much else, 2 zoom-services with half an ear & eye.
Except rounding up a demo of the Bella-song, no idea what my singing teacher will say, my wife thinks it’s “very particular” - but then so is Bella… and me too.
Dunno what to make of lockdown from Wednesday on, made me nervous first, but first chance of home office, might be OK or even good…

Bed early now!

[JayCS]

Day 22, Monday (Day 1 of Week 4 Working 40%)

Again not a good day, bad for the statistics…
Sleep OK, nice 'n early 'n long. Cold showering helped once again.
Weather: warmer and wet, still OK Colleague who knows me well gave me the typical: Well you look OK… grrr - she’s getting
Work: An hour. Enough. ;-/
Energy: Nope, not really.
Cycling: OK. Slow. Stumbling off.
Breath-holding: Didn’t feel necessary.
Activities: Table tennis 4 games OK, cold showering after helped. Continuing the 2 songs, plus spoke about it in my production/singing lesson today. My mum and my singing teacher like both btw. Bella is not a kid’s song, it’s a musical song, we’ve decided. Making music is helping keeping me happy. Like table tennis and joking around here is keeping me laughing And the Bella song is doing both. Just explained to my wife, now she understands the song better… Didn’t have to explain it to my teacher tho.

Off to bed early

[AussieMom]

hahaha, I’m so glad that Bella has inspired you musically! Truthfully, she is SO spoiled that sometimes that little toot drives me crazy! She just HAD to play fetch in the SNOW today!!! And,I kept having to walk out in the snow to help her find her snow-covered (and partially buried) stick, (Y-e-s, J, the rubber stick that is called a “Twig” because it is smaller than the rubber stick they call a “stick” LOLOL).

By the by…What is your new avitar pic? Is it a wizard or darth vadar???

Strike that! I magnified your pic and see that it is a birdie! Too cute! Sorry about my eyesight - I thought maybe you had become a monk, joined a cult, idk… I do enjoy your nature pics!

[AussieMom]

@JayCS

Except rounding up a demo of the Bella-song, no idea what my singing teacher will say, my wife thinks it’s “very particular” - but then so is Bella… and me too.

I am laughing and laughing! You crack me up! Bella is sound asleep in her little “tent” bed. What does “very particular” mean??? That probably describes Bella, too. I think you’ve hit the nail (or the doggie) on the head!!!

[AussieMom]

@JayCS

OK, I’ve changed my avatar now. The colour fits too. Black really, but a “slight” shimmer of silver when the light falls on it…

Oh my, J, as you can tell, I’m reading your posts out of order! (Don’t ask me why -I have no idea) Now I see why the new pic! I love birds, also. Had a double yellow head parrot years ago. It was MY bird and loved only me. Had to give it to my brother, as it kept chasing my son, wings flapping and cawing loudly (My son was just 2 at the time!). The bird’s name was Chester, and it could say “Hello Chester.” My brother (who sold it to me) found out it was a girl, so I changed her name to Ginger. He/she was confused at the change, at first, but quickly learned to say “Hello, Ginger”. They are cool birds! If the phone rang, she would say (very loudly) “HELLO!, HELLO!, HELLO!..” When I played piano, she would sing…“Ahhhhhhhhhhhhhhh” (Imagine hearing a crazy old lady singing very high-pitched) LOL. A very FUN bird indeed! One eye opening moment. Every now and then, she would repeat “Daaaad, Daaaad, Daaad…” I told my (now ex) husband that she was mimicking my son, as he tried to get his dad’s attention…
From the mouth of babes and double yellow head parrots…

PS: Another fun Chester/Ginger fact: He made “coughing” and “grumbling” noises. Apparently, (before my brother) he had belonged to an old guy with smoker’s cough.

[JayCS]

Day 23, Tuesday (Day 2 of Week 4 Working 40%)

Hmm, let’s see
Sleep OK, nice 'n early 'n long again. Cold showering helped directly after bedtime (Mme. Army Boots has a visitor). Fairly often uneasy/yukky lower back, but didn’t want to cold shower again, but sort-of-yoga helped: lying on belly, feet up, rocking to and fro. Melatonin didn’t help much, but am drowsier now upon waking up, I’ll have to use my tracing my meridian lines plus activate the (painful) cortisol point in my ear (the natural antagonist of melatonin/serotonin).
Weather: wet, still OK
I’ll finish yesterday’s remark here: Colleague who knows me well gave me the typical: Well you look OK… grrr - she’s getting an Invisible Illness pic from me, the one my wife said I should wear on a T-Shirt for everyone to see what she sees in my eyes…

Just have to add that it’s much worse than it looks here on the right…
Ah, I’ll add one of my other ones…

Of course this one isn’t graphic enough…

Work: Unncessary, didn’t do much either, headache all the same Drink.
Energy: OK
Cycling: OK
Breath-holding:
Activities: Table tennis ? Songs ? Hairdressers before the lockdown tomorrow.
Bed early ?

Analysis:
Going to bed earlier is the main pivotal point.
And how long is the acupressure helping?
Day 1&4&8 it helped (only) 1.5 days,
Day 11 0,
Day 15 0.5+?2
Day 18 0.5.
Let’s say I can always relate better days to acupressure, usually directly. Day 16 seems to destroy the pattern, but upon looking closer it was a pretty good day, and probably like it always seems to be: going to bed late/r was the only problem. So Day 15: 4 good days.
If it weren’t for dentist and going to bed later it could definitely’ve helped more.
Reducing activities is necessary because of that.
The statistics up to now, Day 23, has gone up to 80% of not-good days.
Interesting what Christmas-time (incl. dentist-backlash) will show. Traditionally I/we go to bed late then, like I bet most people: Not a good idea at all, I hope my wife will understand…

Ache, feeling ill etc. (where 7 is only being able to lie down)
Starting at “5”, going to this after that:
1-3pm Cryo & Acupressure: 1.
3-4pm 2 stores, slowly: 3 (no table tennis)
5pm 4
6pm: 5 (feel beaten up, hands/wrist/arms hurt, no stiffness, with energy, but no drive … how do you put that into ONE number… - our typical pain questionnaire problem…) (no hairdressers)
from 7pm 3

[JayCS]

AM: “What does “very particular” mean???”
1 ) of or relating to a single or specific person, thing, group, class, occasion, etc., rather than to others or all; special rather than general.
3 ) distinguished or different from others or from the ordinary; noteworthy; marked; unusual
4 ) exceptional or especial.

Just to be safe & clear: I would never never NEVER hit the doggie on the head…

'Sno/w time like showtime for Bella…

“double yellow head parrot”
Wow, great, a coughing parrot! Looked 'em up, being curious of course why “double” , and if you can get them with 3 heads too, and if the heads can talk to each other… Bit disappointed that it turns out it’s just that they have the most yellow of all yellow head amazons (and it’s unclear if it’s an own species)… Ehm - who did Ginger learn the singing from? And could she “laugh”?