What Does YOUR Flare Feel Like? {This Girl is on Fire}

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{Typo finds are very welcome as I’m pretty medicated today}

What does a fibro flare feel like to you?

Can you identify its cause(s)? Please comment or message me your answers. Also please let me know if I can share them in my next post. If so, do you prefer your name, a pen name, or “~Anon”?

My flares come from: 1. Overdoing it  2. Poor sleep due to the ugly fibro fatigue/insomnia combo, or when my daughters have nightmares or illness 3. This one is new as of last month: Emotional Flares

1. I’m working hard both not to overdo it and to gain endurance. Some days/events with my daughters are worth risking a flare; I make sure to revel in the experience, then wait and see… If I flare, well, I’m a sentimental mom and they’ll never be 4.5 and 6.5 again so I take my chances on the important moments.

2. A busy day does not guarantee good sleep. Sometimes it leads to the opposite. “Sleep hygiene” has been suggested to me so often that when I hear the phrase I laugh/get off the phone/delete/scream/curse. No amount of hygiene or meds seem capable of helping me sleep when I want, how I want, as long as I want, or without waking throughout the night, or out of a dream with a bang at 4:45 am, which is perhaps two hours before my daughters drowsily call for Husband or me. Waking that early is not a good start to my day no matter what time I fell asleep.

3. Emotional fibro flares that arise from tender-hearted growing pains conversations with Rosebud, or a deep look into Husband’s eyes? Really? Yes. They’re frequently related to my family’s emotional ups and downs, which tend to revolve around the inconsistency and unreliability of my health (and certainly when my daughters think I’m dying).

This girl is too often on fire.

I know a flare is coming when my back begins to shoot pins and needles. Soon it feels like 100 hands poking small, precise, medium-sharp knives into my back like rapid machine gun fire (from movies and the news, not in person, do I know that sound). Then the fire expands to my whole body. It goes on for hours, days or weeks, even after I’ve taken my first and even second or third round of “flare protocol” meds. I do use Eastern methods though acupuncture, injections, and dry needling are not my friends. I’m excited to try cupping soon.

I’m so ‘forking’ over being under attack (yay and also boo to my strong fight or flight response) or waiting for the next flare to creep up my back.

I want to fight even smarter. It’s time for new tools.

On Monday I’m going “shopping” for a new pain doctor team. I have two good leads. This month I’ll begin to work on emotional flares with my therapist. I’m also seeking a referral for a hypnotist.

I was inspired by a Twitter post from the tippyest-toppyest of my literary totem pole— author Elizabeth Gilbert, who recently suffered great love and loss—to write the following. “Cobble” alludes to a poem my mom wrote as she was dying of breast cancer when I was a teenager. Her poetry is my rallying call and a temporary tattoo I sometimes wear from inkbox.

I am my own superhero. If I don’t handle it, cobble it, cry over it, figure it out hour by hour, who will? #fibrostrong #chronicillness #purplestrong #supportfibro

I would love to hear about your FIRE, fellow warriors.

Girl on Fire by Alicia Keys

She’s just a girl, and she’s on fire/Hotter than a fantasy, longer like a highway
She’s living in a world, and it’s on fire
Feeling the catastrophe, but she knows she can fly away
Oh, she got both feet on the ground/And she’s burning it down
Oh, she got her head in the clouds/And she’s not backing down

This girl is on fire
This girl is on fire
She’s walking on fire
This girl is on fire

Looks like a girl, but she’s a flame/So bright, she can burn your eyes
Better look the other way
You can try but you’ll never forget her name
She’s on top of the world/Hottest of the hottest girls say
Oh, we got our feet on the ground/And we’re burning it down
Oh, got our head in the clouds/And we’re not coming down

This girl is on fire
This girl is on fire
She’s walking on fire
This girl is on fire
Everybody stands, as she goes by
Cause they can see the flame that’s in her eyes
Watch her when she’s lighting up the night
Nobody knows that she’s a lonely girl/And it’s a lonely world
But she gon’ let it burn, baby, burn, baby
This girl is on fire
This girl is on fire
She’s walking on fire
This girl is on fire
Oh, oh, oh,
She’s just a girl, and she’s on fire

 

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