Hey there fellow chronic warriors. Who else here finds themselves involuntarily rolling the dice when it comes to showering 👋.
I love showers. Long boiling hot 🥵 showers. They are my saviour; they are my downfall. It can go either way. From one shower to the next there is no way of knowing.
The other day after a shower, I bee bopped my way down the hall ready to conquer my kitchen. Today, I’m not dried off yet and all I can think about is crawling into bed.
I feel drained, zapped — depleted of all physical energy, and my brain is foggy.
It’s not all bad though. Standing under the hot shower stream relieved my pain a little, and right now I’m toasty warm. No chills in my body whatsoever.
But, I’m super tired, kind of dizzy and need to lay down.
And so, that’s what I’m going to do. Admit defeat in today’s game of Fibromyalgia Shower Roulette. Cut myself some slack, and allow myself to rest up. We have an outing tonight that I’m looking forward to. I’m going to attempt a guilt free catnap 😴
Wish me luck 🤞 Sending gentle hugs and healing vibes your way. Maybe I’ll catch you over on Instagram or Facebook.
7 years post fibromyalgia diagnosis and I’m still trying to accept that lowering the bar is essential to living my best life. Pushing myself beyond my physical limitations leads to a flare, period.
I push too hard and I get knocked down. It’s really that simple. Forgiving myself these limits. Now that’s where I struggle.
Pre Fibromyalgia Diagnosis
I’d like to say that I’ve learned not to beat myself up over
it. But, that’d be a lie.
The truth is that I still spend way too much time belittling myself for not getting things done. And, when I do finally finish a task, I judge myself in comparison to my pre fibromyalgia diagnosis standards. Which I can no longer live up to.
So, what does this achieve? Nothing positive, that’s for sure. Quite the opposite. I deflate my energy level to sub-zero with all the unspoken words of criticism bouncing around in my head.
Instead, I should be supportive and patting myself on the back for doing my best. I know I need to adjust the bar downward. It’s just that I’m having a hard time accepting it.
Setting Fibro Standards
Which brings me to my biggest fibromyalgia lifestyle hurdle;
lowering the bar.
Having to lower my standards, is my biggest fibro struggle.
Not the pain. Except when I’m having a fibro flare of course. Then pain is
number one. But even then, often I spend much of my involuntary painful
downtime stressing over what I’m not getting done.
My insurmountable hurdle since my Fibromyalgia diagnosis has been accepting that I can no longer strive for excellence in everything that I do. I have always been an overachiever and strove to continuously raise the bar higher. I’m very competitive. And pre-Fibromyalgia diagnosis, my toughest opponent at most things was always myself.
Whatever I achieved, I’d push myself to do it better the next time.
7 years after having been diagnosed with Fibromyalgia I’m finally learning to accept that my standards have to change and that I need to start congratulating myself a little more on my many daily successes rather than condemning myself for things beyond my control.
Sometimes in life, the sky is not the only limit and that is ok.
The moment the words ‘get active’ escape their lips my focus shifts 100% to holding back the incredible urge to roll my eyes. For the most part, unsuccessfully.
It’s like constantly replaying the perfect vine loop or watching Groundhog Day over and over. We keep hearing how we need to get active in order to feel better. But, what people don’t understand is, we need to feel better in order to get active in the first place.
Press play and repeat day after day after day the exhausting loop plays.
For five years I spent a lot of days, months actually, beating myself up for not being active. It’s exhausting silently screaming at yourself constantly to get up and get active.
Music is Good Medicine
Then about a year ago I started listening to music again. Not only did the right playlist cheer me up, but often I’d catch myself bee bopping to the music.
Don’t get me wrong, I wasn’t pulling off DWTS or anything. Sometimes I was simply swaying to the music or shuffling around like Tim Conway. But, I was standing and I was moving.
Which when your battling fibromyalgia’s chronic pain, counts as getting active as far as I’m concerned. Music doesn’t always get me moving. But, it does some days and in my opinion that’s better than no days at all.
Anyway, I remembered how much I loved going out dancing and how good it made me feel and so for awhile now I’ve been working at wiggling my butt daily.
I created a bunch of personal mood lifting playlists. Each one is 6 songs and about 20 minutes long. While prepping for my shower, I press play and more days than not the music gets me swaying. I always try to get boogieing before hopping into the shower, because I’m usually physically zapped after.
Turns out, well for me anyway, that music is good medicine. Hmmmm, who knew?
Get Active, It’s a Personal Thing
What I had to learn was, to set the bar at a realistic level for me. And, to give myself credit for any and all physical activity. To encourage myself to get up and just get moving instead of putting myself down because I expected my version of “getting active” to be on par with die hard gym goers or the people I see out jogging.
It’s time Fellow Fibro Warriors to pat yourself on the back each and every time you wiggle that butt, even if it’s ever so slightly.
PS – I started this post back in April. Little did I know that one of my all time favourite funny people would be moving on from this world before I finished it. RIP Tim Conway, thank you for filling my life with laughter.
Raise your hand if you’ve ever been asked “what does fibromyalgia feel like?”
Oh wait a minute, I can’t raise my right hand today because of killer shoulder pain. Hang on while I check to see if the left arm is working. Yeah! I can raise my left hand! Yes, I have been asked what having fibromyalgia feels like, many times.
Who knows what tomorrow or even later today will bring. My shoulders are favourites for my fibro buddy to target. There can be limited range of motion in one shoulder or both. Sometimes neither, those are the good days. I find out only when the time comes.
Absolutely no way to predict these things, but learning to live with fibromyalgia means respecting physical limitations when they do crop up. I’ve been taken down for months by my fibro shoulders.
I mean pain pops up everywhere, no part of your body is sacred and there’s quite the variety of pain types and levels. There’s the stabbing, knock the wind out of you and take you down “fibro pain”. It moves around targeting different parts of you and the pain level ranges sometimes requiring medical attention.
Then there are the dull throbbing aches throughout your body that never completely subside. Sometimes they flare in spots and the pain can take you down. But, if you learn to respect the aches, and don’t push too far they can remain a dull pulsing ache.
It’s exhausting to never be comfortable, but you have to learn to live with the discomfort in order to survive.
Sleeping? Well that’s a whole different matter. Tad difficult getting good quality sleep when your body is constantly hurting. Oh, and restless legs? Wow, they work better than any alarm clock. Then there are the times that your skin feels like it is quite literally crawling with tiny stinging insects, just under the surface so you can’t quite get to them.
We each are individual; unique. No two people are exactly alike. In that same sense, how Fibromyalgia affects or feels to someone will differ as much as we do as people.
Plus, fibro symptoms are almost fluid, they transform and move around constantly. It’s this never ending process and so it’s tough trying to put into words something that never stops evolving.
So to answer the really tough question…what does fibromyalgia feel like?
It feels like…desperation.
It sucks to be exhausted, confused, and uncomfortable in addition to suffering from varying degrees of widespread pain every second of every minute of every day.
The thing about Fibro Warriors? We get knocked down, but we get right back up again. Well, maybe not right back up, but we get back up as soon as our bodies say we can.
Been a bad fibro flare week. Yuck! Pretty sure an infection is kicking up into high gear and heading out on its road trip through my body. Wonder which route it will take this time…
So far my eyes are looking like I had a wickedly good party, and my sinuses have started that all too familiar throb. I’m so tired that I can’t keep my eyes open, but once they flutter closed I can’t fall asleep. If I am lucky enough to finally drift off, a sound, no matter how gentle startles me awake.
I sit up and try again. Rinse n’ repeat as I like to call it. Try to focus on something in front of me, and slowly the eyes begin to close. Then my chin hits my chest, head lolls to the side and I begin to drift. A bird chirps somewhere and WHAM! I’m startled awake once again.
Fibro Flare Ranting For Relief
Argggggggggg! I freaking hate fibro flares!
Thanks for letting me rant. I really do try my best to keep things positive, but sometimes reality just plain and simply sucks! Especially, when you’re living with fibromyalgia. And, some days just letting go and getting it all off my chest is the best medicine. Am I right, or what?
Instead of painting on a smile and picking through a massive pile of negative for one teeny tiny itsy bitsy spark of a silver lining, sometimes it is ok to accept that there just really isn’t anything good about today except that it will inevitably turn into tomorrow.
Moan about it, groan about it and maybe even allow yourself to cry a little.
I mean, I’m not talking about allowing yourself to dive into some downward spiral where there are dangers of drowning in the deep dark depths of negativity. I just mean acknowledging that at a particular moment in time, especially during a fibro flare life is not fair and on this particular day it just plain sucks.
Yesterday was an ok day, and I hope tomorrow will be great but today? Well, today is an awful day and I’m giving myself permission to not fake it.
I hurt everywhere and have sub-zero energy. I’m feeling miserable, and for a little while I’m going to allow myself to sit here uncomfortably in pain and be miserable.
So for now my fibro warrior friends I leave you with a quote from I Love Lucy “WAHHHHHHHHH”!
Take care and cheers to having fabulous fibro flare free days!