My Life with Fibro

❗️These two were thrilled to try on the masks my mom made them. It was bittersweet to see them so excitedly adapt to this bit of our new-ish normal. (Don’t @ me... they haven’t been out in public in a month. But, we have these when we need them. Thank you .sus.hey.)

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🚫I’d ask how you are adjusting to a new normal, but I imagine this is not your first experience with isolation. At home or in a medical facility. Seems those of us with chronic health issues have been preparing for this sort of situation since our dx.

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❓So, instead, how has your experience with chronic or invisible illness most benefited you during this time?
❓To how many other new normals have you adjusted along your health / life journey?
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🙋🏽‍♀️ Raise your hand when you see it. (Swipe for a closer look.)
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🦎 Unintentionally snapped a shot of this sweet little thing yesterday while taking in a bit of the lovely Florida sunshine and breeze. When I noticed, it got me thinking...
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What other lovely, fun, delightful, smile-provoking details am I overlooking in daily life?
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Am I noticing more or less of those details in this new, temporary normal?
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How about you? What’s a detail you’ve noticed recently?
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The sky this morning was absolutely blank. “Severe Clear,” as my father would say. A blank slate. The symbolism as loud as a deafening silence. And the sunlight as bright as the hope brought by smiles from my sons. ....
What did you do with your blank slate today?....
What are you doing today to create a clean slate for tomorrow?....

PACE
Setup for success.
Plan to persist.
Excess action leads to inaction.
Pacing facilitates well-being.
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When kicked off on November 1 we adopted a new routine in our home. Our new routine prioritizes persisting in pursuit of our goals. All of them. - -
It is amazing to see what a bit of sincere effort toward eventual, significant change can accomplish when paired with a realistic plan. (Which is far closer a plan to succeed than a dramatic, unrealistic plan.) - -
While the changes we made were subtle and uncomplicated, the impact has been dramatic and deep. My thoughts are lifted. My attitude focused. My feeling of accomplishment at the end of the day increased.
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We’re going to bed earlier. Getting up earlier. Accomplishing more, earlier. Relaxing together, earlier. - -
But, arguably most significantly, we start each day united with a focus. And end each day knowing we paced our day to sustain effort toward / on that focus in such a way that we can persist at said pace tomorrow. And tomorrow’s tomorrow. And so on. - -
You have a goal.
You have a purpose.
So, pick AND plan your pace today.
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I love our Saturday morning family workout tradition. Thank you to my mom for creating this deck of cards. And, thank you to my husband for getting this fun video.

Street Parking Rogue Fitness phil&teds Reebok

Family “Deck of Cards” workout this hot and steamy morning. Even Ajax participated in his stroller by lifting his 1# dumbbells. Start with a full deck of cards, turn over a card and do the listed number of: ♥️—single arm DB lunges ♦️—Russian Kettlebell swings ♠️—toes to bar ♣️—DB squats Joker—15 Burpee jumping jacks #crossfit #garagegym #streetparking #fitfam #familiesareforever

Sometimes looks like this... Beginning your warmup with a miserable .screaming.eagle cuddled up for comfort.
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My sincerest gratitude to for stepping away from his writing to save my workout, and a point for . (I have to brag here: Earlier in the day did this dreadful single leg deadlift and death by bar facing burpee workout WITH this sweet, active 20 month old awake and “helping.”) •••
Continued gratitude to my dear friend and neighbor for being a consistent, late night workout partner. She just started CrossFit workouts with me last fall, and hasn’t skipped a beat as she’s progressed to her third trimester with her fifth child. •••
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Please tell me I’m not alone. What obstacles do you encounter in your daily fitness endeavors? What’s your funniest workout distraction story?
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Life is far too short to unintentionally allow a yesterday to determine the tone of your today.
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This day is yours.
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Set out with intention and open eyes.
Then, persist toward your purpose with patience and an open heart.
Finally, conclude with a clear conscience and a calm mind.
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Mayo Clinic Radio: Fibromyalgia Fibromyalgia is a disorder that causes pain all over the body, sleep problems, fatigue, and often emotional and mental distress.

SMILE
Freely and frequently.
For yourself and others.
It is truly contagious.
In the best way.
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We’ve been working to teach our oldest that smiling is a superpower. One of his superpowers. People who see him smile cannot help but do the same. And their smiles lead others to smile. And the cycle continues on throughout the days of those who play a part... by smiling or seeing (and inevitably sharing) a smile.
Moods are lifted.
Outlooks improved.
And resolve increased.
So, share a smile today.
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“It was morning. I was walking. And anything was possible.”
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Have you had days (or weeks) when getting vertical and then walking was a win?
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This quote from an old post came to mind this morning as I walked into work for the first time since the flu hit all four of us. Never mind that I probably shouldn’t have gone to work, I felt like a hero making the effort and trekking through the parking lot and up to my office.
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These pictures were taken just three seconds apart. The only difference? I rotated 180°.

The contrast spoke to me in a variety of ways. (Imagine dramatic thunder from the northern, black sky photo to the right.)

Your view isn’t the complete view. Reality isn’t just what we can see. It also encompasses what we can’t see.

Someone looking at the bright blue sky to the south, on the left, would say very different things about the weather and the possibilities of the day than someone looking north, at the ominous sky to the right. Both would be accurately, but not exhaustively, describing the day.

If we judge purely based on what we can see we will find ourselves overwhelmed, ill-informed, lonely, inefficient, and unprepared.

And, who can afford to waste time or energy when they’re living with, or loving someone, with ? (I couldn’t bring myself to type “an invisible illness” because, as I think about it, who in this community has only one?)

But, on this Monday morning, let’s resolve to refrain from judging others based on the day or reality we are experiencing. Instead, let’s remember we never really know what others are experiencing until we sincerely effort to understand.

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We are over on the story today talking about routines as we head into the weekend. Head over and give it a view, then let me know:
❓Do you stick with your routines through the weekend? Or, do you let them go and start anew each Sunday night or Monday morning?
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❓Is routine the enemy? Or, is routine the key?
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There’s still time to make a change this week. Don’t wait.

Visited with a dear friend yesterday. Our discussion got me thinking about how significantly keeping a journal of my food, sleep, symptoms, and more helped me get the proper diagnoses. And, more significantly, the proper treatment. Have you used journals in your health journey?

You still have time. Make Monday matter.

It’s a new day. Go get it.

I went to bed last night with the sort of migraine that has you quitting a workout halfway through, showering in the pitch dark, then laying face down on the floor reduced to saying things like “I can’t do it.” over and over while you fight off those pre-sickness waves of... I’ll spare you the details.

Awoke this morning afraid to open my eyes. Afraid to feel... that feeling.

You know the feeling. The morning after a migraine feeling. The bruised brain feeling. The I’ve never had a drink in my life but I must have a hangover feeling.

But, this morning was a miracle. No hint of a headache. It was a beautiful morning.

Does anyone else have mixed feelings about rain? I love rain, and the prevalence of rainbows in our new home state of Florida, but they don’t always love me back. The sight of a rainbow often fills me with a hint of dread at the likely impending migraine. Do you experience weather-related headaches?

A good night of sleep, on a good mattress, can change your world.

My mattress is a , and I’ve spoken at length about it on my blog. It is worth missing when I travel. Is yours? (Link to my mattress posts in my profile.)

Some days feels like living with the flu. Does yours?

Reading through some old posts, this sentiment precisely fits my recent week. A move to a two story home, with two young children, and two large dogs, and far too many 2:00am + bedtimes has me feeling all these good, full days in my bones. 🔗 http://mylifewithfibro.com/2008/07/31/fibromyalgia-and-perverse-satisfaction/

Does this look familiar to any of you? I've had too many tilt table tests to count. Some (with less straps involved than in the picture below) with dramatic results.

So grateful for my care team at Mayo Clinic, and their expertise.

Mayo Clinic Q and A: All about POTS - postural tachycardia syndrome DEAR MAYO CLINIC: What is postural tachycardia syndrome, and how is it diagnosed? Can it be treated, or do you just have to live with it?

Learning to Live Well With POTS Brightens Daily Life for Christine Esposito It’s a condition with no outward symptoms.

They don't all apply to my life with or , but the ones that do are home runs.

How many of these fit your life with or ?

15 Words That Have A Different Meaning When You Have Chronic Pain "Spoon."

You are not alone. Though your or may be different than theirs, let their stories inspire and reenergize you.

Keep your head up. You're doing better than you think you are.

13 Inspiring Women Who Don't Let Their Chronic Illnesses Define Them ​​A chronic illness diagnosis can feel scary, but these women have proven it doesn't have to stop you from doing amazing things.​

Always love to see people telling their story.

My Constant Exhaustion Turned Out to Be a Symptom of a Serious Illness ​Katie Davis's doctors thought she was just hormonal, but she was actually suffering from a severe syndrome.

"But yet, doctors told me, 'it's all in your head.'"

Roi's story resonates with my personal experiences with and ... especially the bit about memorizing the back of a screen, and the eyebrows sticking out over said screen, and deciding to be your own biggest advocate.

Roy Shternin is the creator of Help+The first ever life saving App.

How to start a revolution from your bed | Roi Shternin | TEDxFuxingPark After Being Ill for years , Roi has diagnosed himself with a rare condition (POTS Syndrome), Starting a medical revolution, saving lives and promoting health...

Do you agree with this? The bit about the dishes definitely resonates. I am grateful for a husband who picks up my slack without being asked.

When You Love Someone With Postural Orthostatic Tachycardia Syndrome Here's what you need to know.

It's been a week of sickness, soup, humidifiers, and serious naps in our house. In a similar situation?
Review these tips.

Generations of parents have spooned chicken soup into their sick children's mouths. Now scientists have put chicken soup to the test, discovering that it does seem to help relieve cold and flu symptoms in two ways. http://mayocl.in/1PsAfBt

Today is World Arthritis Day. Arthritis affects people on a global scale, and raising awareness and support for it is so crucial in helping to find cures and create new medicines to help fight it. WEGO Health team members are participating in and we thought we'd share a pic of one of our high fives! Check out other high fives at this site:

http://worldarthritisday.org/our-campaign