Yesterday I felt really good

[Affinity]

Hi everyone, I just want to document that yesterday I actually had a good day with minimal fibro pain. I want to remind myself that even after 6 weeks of a flare up I can still have pretty good days come back! My fibro pain is usually mostly in my hands and feet and arms, and it's such a relief to have a day off of that heaviness and pain!

Today I feel okay but my 6 year old has been home sick from school this week and now I have her fever, too, which is a little nerve wracking but I am hoping it is nothing serious. She doesn't have any symptoms other than a fever and a rash and is full of energy still and so I am hopeful that it won't be too bad for me. I feel less good than yesterday but not as bad as the flareup even last week.

Just wanted to share

 

[JayCS]

Good to hear, Affinity! Hope you both get over the fever quickly.
I've learnt a lesson the last week concerning 'good days'...
My psychiatrist had explained that our cortisol can displace pain and it was clear this lesson was coming.
My colleagues needed a peak of support last Sunday, feeling under pressure, which I wanted to release, which I enjoy.
And doing the job well and feeling pretty good, slightly tense, however, meaning I 'only' managed 8 hours of sleep, because I was raring to go, having new ideas, positive stress, really. It tallied to about 5 hours of work, not much I spose, but the weeks before I'd been doing 1-2 hours and before that nothing for 8 months (apart from dragging myself back onto my feet, getting the pains and ache down, but almost no work).
The tenseness with almost no pain carried on Mon & Tue, altho the work load has gone back down to 1-2 hours per day, which is OK... Cryo&APM on Mon was great, so I thought my body was coping well. But I was ambivalent about it, hoping it'd work out, but wary, trying to get down again.
Then Tues. evening I crashed completely and since then, not even cryo Wednesday helped. And as well as the Big Ache many of the joint-pains have suddenly been saying hello again... So I've gone right down, lying, taking time to get the sleep up, as I can (9 to 10 hours, which takes 10 to 12 hours).
This is a gem of an experience, because that could again sometimes become a problem when I slowly start working again end of Oct.
I do know that the reason was a typical once-in-a-year problem, so I (over)did it so perfectly, that everyone would understand everything, and it would only have to be adjusted a bit next year. 130% on one day.
But people will need help, and I will then sometimes forget myself, I will feel great, think I'm doing a good job for others and myself,
and then crash. So I need to work out further preventative steps, with foresight. But I need to learn to use an emergency brake. (Or get used to the fact that I will not manage much more than 1-2 hours a day again...)
I need this brake before my body brakes me, breaks me. Constantly. Like now, too. I'm not doing what I wanted to today, yet. Which is OK, but it's the opposite of braking. And I'm suppressing my body again.
But this sharing once again will maybe get me stopping and going... NOW.

 

[Affinity]

I completely understand, Jay, I am having to repeatedly learn the same lesson in not overdoing it when I feel good. I am trying to think of it as maintaining my balance. If I go too far in one direction (overexerting myself because I feel good) there is almost always a direct correlation and correction in energy where I go too far in the opposite direct (into pain and fibro flare). Finding the balance is tricky. It's also disappointing sometimes knowing I cannot do everything I want to do, but I am trying to learn and master this lesson!

 

[JayCS]

Thx! Slowly coming up again, I've realised I have to generally change my priorities. My wife has always been protesting about my ardent use of my computer (for communicating, listening to & making music as well as working). Now I'm giving it a test for at least a week, putting "computer-stuff" in 5th place, after looking after my body, her, my room, our flat. Unless for instance I'm taking a lie down break, like now, or listening to music in the background. Result after 3 days is more self-care, more balance, better sleep. Hope to keep this up...
My lesson is also clearly that the cold will drastically move my sweet spots and praps my overall condition DOWN.... which is invisible but not at all unforeseeable...

 

[Ann Reid]

I’m not a too frequent poster here, because I’ve had Fibro so long I get tired of listening to myself talk about it BUT, THAT SAID, in the past (20 or 30 YEARS, actually) I would often cycle between fibro flares, and at that time, I got kind of relaxed about knowing that even if I spent a day, or several days feeling really AWFUL, that it would pass, and then I’d have some decent days to sort of restore myself.

In this COVID DISASTER? ALL BETS OFF. I draw no specific conclusions from this observation. I just know that the combination of being more or less totally housebound, insecurity about the future (mine, my families’, governmental, climatological, ALMOST EVERYTHING IN MY CURRENT LIFE), current loss of many structures that are important to me (Church, music lessons, social structure, etc.) and caregiving, my life, AND MY FIBRO, are now bouncing around like a bunch of balls in a pinball machine.

THE ONE THING that unfailingly gives me an amazing lift is an hour EVERY DAY practicing my musical instrument. My personal theory is that I get SUCH A RUSH OF ENDORPHINS from playing that horn at least in that brief span of time, but also consistently EVERY DAY, that at least temporarily I can balance out.

Unfortunately I have no way to offer advice as to how we each can find that Zen moment. I I ”lucked” into MINE very coincidentall, and I’ve never looked back. The experience, for me is VERY AEROBIC, and I wonder if that might not be part of its value to me. Plus, it’s FUN!

I too do CBD oil, a Tylenol and an Advil every day, a big fat time release Melatonin, and a bunch of herbals every night, and after THREE YEARS of 4 or 5 hours of sleep a night, I now get 6 1/2-8 hours, many nights per month. Big mprovement.

It is almost impossible for me not to feel like giving up the effort, but my experience is, baby steps towards a tiny goal can add up. Please don’t give up on yourself. YOU’RE WORTH IT!

 

[Affinity]

Thank you for your input, Ann! It's so cool that playing an instrument is so instrumental in helping you feel better! My husband plays the clarinet and dabbles with the piano but makes time for both every day. I should play my ukulele more often, it is something I enjoy but I just run out of time most days!

I also agree with your overall assessment. I have had a much harder time this year than in previous years! Plus I also take melatonin and think it helps a lot in getting more sleep. And the more sleep I get the better I generally feel!

 

[sunkacola]

I would say that if you are spending more than an hour a day on the computer you are definitely not moving your body enough. Plus, computer screen (or phone screen) is bad for your eyesight and most likely for your posture as well. Exercise. Take a walk. Get into a hobby.

Playing a musical instrument is super. But if you can't do that, try drawing or painting. Supplies are cheap and you don't have to show it to anyone. Or try learning how to knit or crochet, or make something else. anything will do! You don't have to be good at it. If you don't like it, try something else. Start with the cheapest supplies so you don't feel bad if you don't turn out to like it. Donate any supplies you don't end up using. There are a million hobbies you can try.

 

[Affinity]

I definitely spend more than an hour a day on my computer, as do most people who work, I think.

 

[JayCS]

Whoa, that's a challenge ;-D.
The computer is not bad for my eyesight, and not for my posture/back either, because I stand, sit & turn on a kind of moving bar-stool or usually lie down when taking a break from my hours of movement - exercising, sport... Considerably worse for my posture and my arm-ache would be drawing, painting, knitting etc...
I work at the computer for 2 hours a day, when I start properly that will go up to 4-5 hours. My computer is also a big part of my making music. I play keyboard, sing, take singing & production lessons per video, make songs & instrumentals, all using the computer. (Just ending my second fibro-piece by the way, the first was a 25min. instrumental I called "PainStaking - 20 Facets", the second is a song, calling out my pain and my new life called "Sky-Diving"; progressive experimental tech-rock, not mainstream). That's another 1-2 hours a day. Then I mail (sometimes video-conference) with relatives, friends and colleagues 1-2 hours per day, because it's much less painful than phoning (arms/hands) or meeting in real life (often not being able to lie down, or even sit/stand properly), I can dose it better into small portions, and because I can put much more and deeper thought into things and my life when writing. Then I research (incl. forum exchange) symptom-stuff, which has helped get me better 1-2 hours a day. So let's say 5-7 hours a day. Not in one piece of course. And not considering the time listening to music and using breathing or workout tutorials, listening to documentaries (while moving around).
The rest of the 13-14 hours out of bed trying to sleep, i.e. 6-9 hours is reserved for my wife, our flat, our guinea pigs, my therapists (less now) and probably 5+ hours a day moving, table-tennis, cycling, gym, exercising, more than anyone I know and anyone I know knows.... ;-) Plus I move around considerably at/with the computer (laptop), I rock from foot to foot, I turn my body, do exercises while thinking or reading.... And keep changing my activities. So the computer is my instrument for many hobbies and doesn't necessarily stop people moving, not me at least. I'd argue it's a question of how you use it, not how long. But: it's not my first priority any longer. That's in any case a good, important step. And it reduces computer time a bit, too.

 

[Affinity]

I used to use a standing desk and I loved it until I had unexpected surgery unrelated to fibro in 2019 and ever since I haven't been able to use it or stand that much. But sitting at my desk is where I am most comfortable and in the best sitting alignment. I often sit at my desk even when I am not working, because it is ergonomic and I have a hard time sitting other places in our house for any length of time because I get so uncomfortable. I used to get a lot more movement in as well but as I work to heal this hip injury I can't do much without reinjuring things and so right now I admit I am more sedentary than normal, at least until the hip is healed enough to return to normal activities like walking etc. I do currently play catch with my 6 year old and clean the house and stuff like that, too, but I struggle if too much hip is involved. I rode my bike up and down the street with my kid on Sunday and literally had to spend hours after on and off with an ice pack on my hip, after like 15-20 minutes of very slow bike riding.

My computer and phone are the tools I use for my income, I have always run my business remotely but since the pandemic I no longer accept in person clients. I do try to get up and move around at regular intervals throughout the day, and I do walk to the bus stop and back for my kiddo to go to school and come home, but right now I do spend a lot more time sitting than I like. I usually spend like 30-60 minutes a day doing my physical therapy exercises, too. I am lucky to be self-employed so that I can set my own schedule and right now I am feeling pretty balanced about it all, to be honest. I wish I could be more active but I am also accepting the process. I have re-injured my hip a few times already and I realize I need to be overly cautious so that I can actually get myself up to speed instead of keep knocking myself back through more injuries. At least my PT finally has me doing some Pilates at our sessions now. It took over a month to get there and we only did 5 minutes or so this week of that but it does feel like we are starting the make progress.