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.
It’s tough trying to be tough when you watch your poor spoonie dog becoming sicker and sicker. It’s one thing to be running the autoimmune disorder gamut as a human. But, can you imagine how confusing it must be for a dog?
It’s like we just start to get one illness under control and yet another creeps up and knocks poor Leo for another loop.
Pretty much the same way it’s been for me going on 7 or 8 years now. Even some of his blood test results are similar to mine. And, like many of us human chronic warriors, neither his exact illness(es) nor the underlying cause(s) can be pinpointed.
Spoonie Dog Medicine
My poor dog Leo keeps getting one medicine after another, which leads to some temporary relief. But then the side effects kick in making matters worse or sometimes causing new illnesses.
I thought I felt helpless riding my health roller coaster. Ha! Now that Leo’s hopped on board, the climb to the top sometimes feels pretty much insurmountable.
Anyway, I’m not complaining because he’s the bestest dog ever and I love him with all my heart.
On a sunnier note, warmer days are finally helping to ease the widespread screaming joint pain I was plagued with since the fall. I’ve managed to break through the surface of clutter and disarray that accumulated over the winter.
Feeling a wee bit inspired, and that my chronically fab friends is a start.
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.
Wow! What a rough winter, I was fibro tired every minute of every single day. My joints were more painful than they’ve ever been and my sinus pain was through the roof. Which made it tough to get things done, especially during the holidays.
Plus, I got hit with a cold that spiralled into bronchitis. I ended up in bed on antibiotics, and as if that wasn’t enough, my poor doggie Leo was very very sick too.
Turns out I’m not the only one in the house who is battling multiple autoimmune disorders.
But, there’s good news. A silver lining if you will, and it’s that unlike chronic incurable illnesses, chronically awful winters END.
It sure took its time but, thank goodness spring has most definitely sprung 🤗
My joint pain still exists, but it’s no longer in a screaming burning state of rage. Now it’s more of a dull constant throb.
Bonus, the antibiotics I took for my lungs also brought about some much needed relief from my chronic sinus infection. Yay!
Fibro tired still but…
I’m still fibro tired, but with each day of sunshine my energy level’s steadily rising.
I mean sure it’s picking up at kind of a slow tortoise like pace but it’s going up, not down. Which is of course, the another welcome relief 🙂
I’m pushing myself to get out as much as possible So the sunshine solar power charge my diminished energy levels.