JayCS’s Fibro Blog

Sleep: 21:45-6:45=9h10-25’=8h45=+45. 1am unsettled: 2x1’ cold shower 4h without break!
Good, happy, but breathless again, deep-breathed a lot while drowsing breath-hold ex. soon!
Weak/Ache: 3 of “7”, stiff/gouty/myosfasical 6! (from walk/sports yesterday?) 7’ workout? Lie down?
Ex. in bed, doubled thorax ex. (No hot water bottle etc. necessary, & Sinupret etc. still working).
Ate late hunger early :crazy_face: Just don’t!

Keep up: thorax yoga ex. Always 2x the normal thorax ex. Deep breathe all the time, 500x/d.
Dreams seem OK, altho day -1.
Try if there is a limit for doing the breath-hold exercise: Why not every 2h? (Cuz 3 rounds is 11’?!)
Limit for cold showering 2-3/d is my sensitive/dry skin - I think… But why? - it’s only 1-2’!

Day -1
10:30: Still no better (no TT yet, didn’t lie down enough, didn’t help): 1x3 breath-hold light (1) again. :slight_smile:
11:45: Still OK (1), lower back pain 4’ lower (2) & 6’ (1) middle back Yoga, but
Ache 3 ** sigh ** & tired ?eyes (5) eye warming exercises 2, just eyes!(?)
2pm: Eyes 3, exercises 1, Ache 1, stiff still 3/2.
6pm: Felt a bit ill/flu/feverish, deep breathing exercise & while cycling helped.
6-8pm: Eyes 5: Itchy, burning. I don’t look tired. Very relaxed. No heating on. Air cycling helped only a little bit. Are they dry or not? (My 3 Schirmer’s tests didn’t show it, my 3 Saxon-tests showed dry mouth. One more try eye warming… Hmm, worked again, down from 5 to 2. Praps I should try eye drops, if only to see if it’s better. Prefer exercises.

Middle Back Yoga: e.g. https://youtu.be/xqlAXO_K42k, https://youtu.be/qQ6rdsQxaEM
Book: a) prayer-hands: move them sideways,
b) loose swinging: from bottom to above head & back down,
c) heaven press: pretend you’re holding up the heavens.
d) lazy triangle: Foot forward, one hand down, other hand above you, look up to it.
e) blade: fingers on sternum, hand-backs together, head down, knees bent, then open it all up.
f) cow’s face: One hand behind neck, other one on its elbow.
g) sunrise: Lie down, arms up to the sides, more and more to the front.
h) resting frog: Lie head on hands, knees apart like frog’s legs.
Plus: “invisible ball”: hold the side of an invisible big ball in front of you with both hands.

Dry Eye Exercises: a) warm with cupped hands, warmed by rubbing against each other, several times;
b) Gua Sha using a jar lid.
c) massage upper lids & lower eyelids https://youtu.be/bGJqucoHmjs
d) Fresh air? Not helping much…

Talking about my health :wink: : 1’ yesterday, 4’ (asked) today up to now.

Sleep: 21:25-7:05=9h40-55’=8h45=+45. 2am thinking about a “Better sleep overview”: 2x1’ cold shower 2h without break. Good, happy, not thinking about work.
Energy/Ache: 2 of "7.
Ex. in bed (doubled thorax). (hot water bottle after cold shower necessary, & Sinupret etc. still working). Thighs turned the leg outwards (knee or foot) 0 in 4’. Dreams seem OK, altho day 0=1. :slight_smile:
(#5 Pain before peeing worse yesterday and partly tonight. Nose: stretching tip 2’ helped too. Did autogenic training/self-hypnotic the last 30’ mins of ‘sleep’.)

Keep up: thorax/yoga ex. Deep breathe.
More breath-hold exercise: Every 2h? More cold showering: 4x/d? Do 7’ workout again. Drink earlier in day (5xpee).
Change the benchmark from 8h/d to 9h/d? Seeing I’m almost managing it anyway and so need the challenge rather than the positive thinking part.
That’d mean -15’ tonight, not +45’, and aiming for 30’ more to make up for the last 2 days… O.o

That is too cool that you did the self-hypnotize in the clinic - The room/atmosphere does sound perfect! I think that my body had actually forgotten how to relax until I played the audiobook! LOL - I can’t imagine relaxing to Siri - too funny!
I was already slipping back into panic mode, for some reason, and then my step-daughter broke up with her boyfriend. It is fine that she was moving back in with me & hubby (I love her very much, and have helped raise her since she was 5-yrs old), but she was bringing her dog. This is the dog that mauled my pup when she was 4 months old, and caused her to be blind in one eye. They are both here now - so far things are fine. We can only hope they stay that way… We are taking many precautions with the pets to keep them separated much of the time.

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JayCS, question:
You know how it feels when they give you laughing gas at the dentist, and your body relaxes, but you are still hyper-aware of everything going on around you? I hate that feeling. I’ve been getting a little of that feeling when I relax my body - but my mind isn’t calm - Does that make sense?
I hate to get on more anxiety meds - Just started a new BP med that is a beta blocker, and that is helping…May need counselling - idk. I don’t want to start having panic attacks again…

Day 0=1
Two good nights, no anxiety, no pain, tolerable Ache - good conditions.
I was at work 9-12h for 3 hours (100’ for breaks), kept my effort down, made sure I never got into a rush, didn’t have any strong reactions, afterwards cryotherapy, didn’t work at first tho, but an hour later I got energy back, managed to play 4 games of TT with no problem, but because I wasn’t sure we stopped there. At home I’ve been lying down writing stuff (30 wakers & stoppers).

Often had itchy eyes, but that wasn’t my focus today. Did a lot of exercises in between for lower and middle back and a bit for the eyes.
Strangely I won’t be able to shower at work, because they’ve got new showers with only one temperature! But I think I’ll do that once I’m home anyway.
I wore my outside stuff inside (windows open everywhere), including gloves with fingertips free.
First thing I want is a blanket and something like a (3rd) jacket, to put round my legs. Could leave one at work. Long johns (got them with me) would be too warm in many of the rooms at the moment.
Hmm… will I make it? The first few weeks should be OK, but December will be the real test.

Talking about my health: 4’, asked how my day was.

Ouch, and that’s not a sad animal movie, it’s a real story, don’t want to try imagine… I very much hope they’re gonna make out now and become best of friends… happy end…
A school mate of mine broke my leg fooling around on ice, but we still stayed friends…

YES, AM, I know exactly what you mean, even tho I’ve never tried laughing gas.
I used to describe as a burning core inside of me like in the earth, which carries on burning even tho everything outside is completely cold = relaxed. At that time I didn’t use autogenic training that much. I needed to get my mind calmer first, targeting my anxiety/social phobia. Never used meds on that, but loads of counselling, help on mailing lists, got it down by doing that, then more and more, and some years ago I found a new knack of staying in the Here-and-Now, which helped me lose one anxiety after the other (over 10), starting with strong fear of heights …

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Sleep: 21:35-7:25=9h50-40’=9h10=+1h10, drowsing/autogen.tr/self-hypn. of that 1h, tho…
Good night till 4am, only 2 breaks, but then small pains, cramps, unrest, till I cold showered at 5am.
Good tho, happy, work was there, but not disturbing.
Weak/Ache: 2 of “7”.
Clavicle & elbow & 2 other joints. Resisted the urge not to put heat on it, but waited a bit before creaming. But getting pain down is more important than sleep at the moment.

Keep up: thorax. More breath-holding? More cold showering? Do 7’ workout again.
Changed sleep-time benchmark to 9h/d.

Day 2

Got stressed 15’ getting ready to work, but 5’ autogenic training as soon as I could got that down again.

Cold at work:
Blanket & pillows on the floor instead of a sofa for resting with legs up/half-up while talking to people - welcome to my living/sitting room, guys…
3rd (thick) hoodie around my waist for the thighs, lying down, sitting, standing, good for cycling too, plus it means I’ll always have 3 hoodies I can swap 'em round. So not just for work. Pity, now I won’t have enough motivation to get me a kilt :open_mouth:, like a female colleague suggested yesterday. :wink:

Boy, am I gonna take some getting used to :wink: but then I always was “difficult” that way :rofl:
One colleague got all sentimental(!) seeing me back, so I guess I’m gonna get away with it. :crazy_face:

New ideas from my cryotherapist/acupressurist:
Standing, hold one leg up at 90° for 30’’, then 30’’ rest, then the other. Or 60’’ if possible… Dunno…
Drink gherkin juice?? - not really relevant it seems to me…

Summary

Don’t get why, but like the idea. Bc of the onions in there I’ll have to gurgle not drink. OK why? https://www.womenshealthsa.co.za/food-and-nutrition/gherkin-juice-benefits/
She told me the good stuff gets taken up in the mouth, but this article suggests it’s the water, probiotics, if with vinegar it regulates blood sugar, some antioxidants - all completely irrelevant! But I just love the taste.

2 new ideas from a male colleague:
Arms to the sides turn them palm up then palm down, he says 30’’-2mins, I say 10’’'ll do me fine.

Burpees?!: Forget it, much too hard! …:

Summary

if you have a certain energy, but avoid injuries: https://youtu.be/tJrdJBWBu08. Oh dear, not a good idea, just did 4, that’s my max. at this moment.

I’d rather keep to the first 5’ of the 7’ scientific workout (much easier to cheat too).

2pm: 1’ of washing potatoes is more than enough. Softy :face_with_raised_eyebrow:. Alternate 2-3 kitchen actitivities…
Hand hurting from chapped bleeding dry skin from cold and water: wear gloves all the time, hand lotion on now. Self-care! Now!
Another 1’, and another, finished. Left face & right shoulder blade are burning, left elbow stabbing, skin itching in several places… Break!
Always had problems with house work, esp. doing something with arms up or working dough. Do better with gross motor skills like sawing… *that’s why I was made a bloke…? Or was it “fibro” long before??

How often to do breath-holding? This guy says 1-2x but in the comments it says: It helps against anxiety. Never thought about that, but it does.

You make a very good point. If the other dog didn’t outweigh mine by 40+ lbs, I wouldn’t be so concerned. She could rip Bella’s throat out before anyone could come to the rescue. And, you don’t get any notice before my SD’s dog gets into “mauling” mode with another animal.
I’ve got a muzzle and we’ve put it on her a couple of times. If they were even close to the same size I could deal with this better.
Maybe the dog will mysteriously disappear one day(???). If she does, I’m sayin’ right now that I don’t know WHO is responsible!!!

Hey, JayCS, congrats on going back to work! It is great that you’re starting back slowly. LOL, if you do end up wearing a kilt to work, please send a pic!

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This was very helpful JayCS. I must remind myself that worrying about what “might” happen is pointless and also very draining to my energy. It has been proven that most of the things folks worry over never even come to pass. THANK YOU :blush:

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Hi AM, OK if just the Here-and-Now-thought helps then maybe I could expand a little. :slight_smile:
I imagine(d) & practice(d) standing at some height, that if I am standing, I am doing just that right now: STANDING firm on the ground.
Not falling, not going to fall and not remembering falling.
Every time doubt vexed/-s me I concentrate(d) on my feet (& legs), grounded.
(So not actively pushing the doubt away, not letting it drift away, just ignoring it by putting my focus on what is there Here and Now.)
When I realized that this just needed practicing it was an attitude that surprisingly transferred to other worries automatically.
But in really challenging situations I did & still do actively concentrate on what is Now.
If my “social phobic remainders” imagine what people could say about me on a stage etc. I ask myself how I am and realize firstly I am alone, I am not on stage (yet), nothing is endangering me in any way, if I am shaky I can massage myself, if I have sweaty hands I can wash them. And with every step in that direction I remain calm by repeating “Thank You: Everything is fine, nothing is wrong Now.” So I make a mistake (I always do ;-)) and say: ah, whoops, a slight mishap, there it goes, but everything is still fine. It used to be able to throw me out or make me count & list them and bash myself up, esp. the night after. Nowadays I feel the mistake has gone (‘there it goes’) and in the new Now there is no mistake.
I’m not sure if it’s clear at all yet. I am also then grounded in myself and it’s also self-caring. So the Now is Now in me and may include things like pain, with self-acceptance.

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Great night, very hard Day 3… OK, not day, got tough from midday on, better now at 7pm.
Woke up as often as ever, praps 10x, 5x I just turned over, the other 5x I got up but kept it to 2’, no heat or cold necessary, (almost) no pain, no unrest… The last half hour I did autogenic training again.
So felt great, got quite some stuff done before going off to work, everything under control & fun. Then after 1 hour of talking to people I was still OK, despite the mask (breathed out of the window in between). But I forgot to drink from 8 to 1 & then I realized I need oxygen, opened the window, but someone wanted to talk to me, took me by surprise, I closed the window, because it was noisy outside, and put my mask back on. Asked how I am in a way that I thought/felt he meant an 8’ version, but then started another topic another 8’. I think the problem was I’d got over my limit before already. Because it was a time where I thought I was prepared to talk and had put the time aside. So it shouldn’t have been a surprise. Wrong attitude.
Cryo & ear-acupuncture didn’t help much, then dentist, not much, but one short sharp pain because of an X-ray. And after that just knackered. Just about managed 4 TT games. (My benchmark…) And now just resting with short activities.
To Do: Lie down before & after set intense talk-time.
Leave a 4th hoodie at work, just in case. (Forgot my 3rd hoodie today…).
Alarm for drinking at work.

This is not a piece of cake: Anything additional like dentist needs to be allowed for.

Yes - this is very good. Letting go of things that have simmered and continued to bother is as important as not worrying about what is to come (or may come). I will think on this - THANK YOU
The fear of heights is something my hubby experiences. Your example about this could be helpful to him. I will think of how to apply that to my problems/worries.
I was not a worrier the first 39 years of my life. Then, I experienced divorce, 1 yr later meeting my present hubby, bought a house, became a step-mom (SD’s mother tried to ruin my life - awful - so glad not to deal with that any longer!!!). Anyway, when I remarried, I started having panic attacks. It was then that I learned that ALL stress - both GOOD and BAD - is STRESS. Then I started having the awful aches of fibromyalgia, along with degenerative discs in my neck, hand problems (very bad for a pianist - which was the LOVE of my life). Loosing my abilities as a pianist, wrecked me.
I now concentrate on the things I have to be grateful for. My faith & family (and doctors & meds) will see me through. Also - connecting with others on this site gives me hope & ways to cope (LOL I sound like Dr Suess!) :blue_heart:

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It sounds like you overdid it at work, JayCS. That often happens to me, even working from home. It is great that you are aware of your limits, and that you learn from each work situation. Wishing you better days ahead!!! :slightly_smiling_face:

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Day 4
Went to bed kaput, but OK, cold showered at 0, slept well again with 1 break till 6, then dreamt at work people weren’t doing things as they should, playing around, I was planless. Wrote that down, which made it worse (I thought it’s sposed to help?). Then drowsily imagined things going right, kicking a goal from a pass and autogenic training, which helped a little bit. I like the goal. Reminds me of surprising “old age” ;-)-successes playing football with colleagues up to 5 years ago (and the ill-feeling I had the days after tho too, and usually getting 5-10 injuries, some for several months). But I spose I can still count the sleep as 9:15h (= +15) somehow…
9am Really stressed getting to work, bad time management, probably due to starting writing the above for a bit of self-comfort after feeling yucky from the dream.
10am But a bit of work done, then deep breathing, yoga and the breath-hold exercise, now I feel better.
Just learnt what I was thinking all the time: The breath-holding (slightly slower? version) is influenced by yoga

here are a few details

It “is one of the most basic techniques in pranayamas you can do and there are 8 types of pranayamas” as I read in a comment there. At last!..
OK, I’m finding it’s not so easy, pranayamas means something like the “art of breathing” in Hindu yoga (or Buddhist Tomma), of which of course there are a whole lot of types, 8 is a simplification. And It’s an ideological controversy: “Real yoga” practitioners claim Wim Hof’s breath-holding is recklessly simplified. But when I read the real yoga stuff with postures I can’t hold, year-long training before getting to breathing-exercises like this, I just have to say: I need this now, desperately!

OK coming home from work at 12:30 my Ache was 6, or maybe 7 (if crying inside counts). Also dull pain in elbows and wrists: cream/heat. Tried cold water just on my arms for 2’, suggestion from cryo. Was OK, for starters, but then a cold shower 2x1’ helped get it down to 3. Then not doing much, eating sitting & playing cards, then lying down & writing. Then tried table tennis, which was hard from the start, had to stop after 3 games, Ache was at 6/7 again. Then laid down again reading & writing since then. Not going anywhere, not to my granddaughter, where I’d’ve wanted to go, not even 20’ shopping, nothing.
Just hoping that cryo plus the long acupressure tomorrow will get this down again. :unamused:
9:30pm: Better at last, after eating bad things like chocolate and cheese and playing cards - gone down from 6 to 2 in the last hour. :slight_smile: G’dnite…

I’m really not sure if I overdid it at work or if working at all is overdoing it. :weary:

I haven’t started work because my body feels up to it, but because I have to make a move after the luxury of 10 months of sick leave. Either slowly try or retirement, at least for 1-2 years. My body now feels up to having a good life without work, with not much pain and tolerable Ache. And the last month showed that doing things from home 2h/d is OK/fun. And some people (one good doc, my wife) are saying they can’t imagine me in retirement yet, I have too much energy, am too young, enjoyed working too much.
But seriously: Where did I overdo it yesterday and/or today? I should be working 2h/d. What luxury! True, I am at work 9:00-12:00. (Getting there and back by bike and train - 30’ - is a bit stressy, but not much.) But in that time I “worked” for 1h and chatted for praps 40’, the rest of the time I did yoga & breathing exercises, lied down or just pottered around a bit, often outside or next to an open window. And what I did in that 1h was really only 60% of the energy that I usually have to put in to 1h of work.
And I also don’t have the slightest feeling I’m going to get used to this in any way.
The only chance I have is as you say to learn and keep on my toes the whole time.
My wife responded it sounds like I am under pressure - yes, praps: but only under pressure to find out how to keep the Ache down. She suggested doing something else less, e.g. table tennis. But I need that, not just because all my docs say I *have to keep my sports going, against the fibro- and also the cardiovascular stuff, but also because I need the movement and the fresh air, using my energy bursts interspaced with generous yoga/leg up-breaks. I can’t see what I can do less. Apart from what’s happened today: no social contacts after. And I haven’t got the energy to make music or sing altho I have my singing/music production lesson tomorrow.
And good conditions today: it’s not too cold, remembered my 3rd hoodie, didn’t get wet, drank & ate & slept & breathed & exercised enough… No anxiety, only 10’ of stress, kept mask-time down… :confounded: The only good thing is sleeping “better”, but that’s not helping my day at all…
My wife did suddenly get affected, when she realized the people she has to do with have to start work with 4h/d, and I’m not even doing at all well with 2… :man_with_probing_cane:

Sorry if I’m being pushy here, but even if you don’t think you’ve got the self-control for an elimination diet - have you tried psyllium when you have a flare? After never having heard of it before a year ago, I’m surprised that I’ve been recommended it 3x by 2 docs, 1 nutritionist since then and it also helps very well. Also if you sometimes/ever have C it works there too: Put it in a lot of water if you have C and only a few sips if you have D…

Day 5
Another challenging night…: Cold shower at 10pm, that worked for 3h, another at 1:30…
Up for 1h25 (), so I only managed 8h20, but happy & a good start, doing everything focussed and in time.
New tricks, in order of importance:

  1. First target: 0 stress all day: Successful! I’ll have to provide 5’ more for everything.
  2. I’ve decided to work less at work and if necessary do more at home. I’d thought I was clever to want to do all work at work and none at home, but I need more breaks, meaning: not talking either. Today I did “light work” for 50’, got feverish again, then got it down with yoga, breathing, making music! (Ha!), then worked another 25’.
  3. My 3rd hoodie is staying at work, just in case. I wore my 4th almost like a kilt :wink: . Knotted the (thickly padded) sleeves double, so it doesn’t slip down while cycling or walking. Then reversed them to the back so the main ‘kilty’ part protects the thighs against cold - & also rain, a great side effect. Good for cycling, waiting and at work. Even next to open windows, which is good for getting more oxygen with & without mask. Or if my back/behind is cold I can reverse it again. Now I’ve got my mobile cushion I’ve often needed on hard chairs too! So up to now I don’t feel the need for any hot pad at all. I’m sure the cryo+acupressure & cold showering is helping my resistance to the cold too.
  4. I get woken up at around 5:30am by the very loud pulling up of the outside-blinds of a neighbour. My wife suggested :wink: hanging a banner outside the window saying: “Please pull your blinds up quietly!” In half-sleep I was considering this, but decided since Mme. Up-Above hacks her floor with her army boots/high-heels/clogs or whatever shortly after, I just have to make it a habit to put my ear plugs in shortly beforehand when I wake up anyway, from 4:30/5:00 on. (Politely telling her she walks around noisily in the mornings didn’t help.)
  5. Altho potatoes are good (juice or a small ungreen one raw) against hyperacidity, eating more than “4” in one go is giving me a specific kind of stomach burning, again disrupting sleep: so less now.
6. Changing masks more easily

Since I have a loop scarf on all the time anyway I am using that more to prevent stress getting one of my masks on. But I’m also strapping one of my masks on my sleeve, bottom down while outside & cycling, so it doesn’t get wet and I can get it on again quickly, so I usually don’t have to use the loop scarf. (I use a thinner mask on train because there is little contact more distance there, and a thick one at work).

I’ve got feverish again in the evening, and tired & everything, but it’s OK, and at least I got some music done to learn something about singing & production in the ‘singing’ lesson. Table tennis was rained off/out…
9pm - OK isn’t quite true, had to shed 2 tears, still feels too much in between, desperately need to sleep…