19 Comments
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Soso's World's avatar

Hi Nick this poem is the one that best describes my version of Fibro. Just this morning I was yet again talking with my husband how fed up I am to be so sensitive to touch... ๐Ÿฅบ๐Ÿ˜–

Thank you for putting into words our shared reality.

Your friend Soso xxxx

Nick Paro's avatar

Ahh, Iโ€™m so sorry you share this with me my friend; while, glad that I can put it into words for you today. I hope your storm breaks and you can enjoy chirps at night again here soon ๐Ÿซถ๐Ÿผ

https://open.substack.com/pub/sickofthis/p/chirps-at-night

Soso's World's avatar

๐Ÿฅน๐Ÿฅนโค๏ธโ€๐Ÿ”ฅ๐Ÿค—

Patti Cass's avatar

Thank you for sharing. Appreciated was Diagnosed 1990. Little was known then.

Susan Theriault's avatar

Iโ€™m glad you are able to get this expressed with writing skills. You are a blessing. I deal with pain, too.

william clift's avatar

Hey Nick, I'm the guy you helped with the detached bumper trim at the gas station earlier today! I just wanted to thank you again for your kindness and generosity. I'm so inspired by your worldview and excited to keep in touch with your writing. Lemme know if you ever want to read some poetry, and I can hook you up with some great poetry books from my job!

โ€”William, clueless driver

Nick Paro's avatar

So glad we connected Williamโ€”I would love to read some poetry and if some are public domain poems Iโ€™d enjoy doing Live readings of them too!

I am going to start doing 1 show a week of reading and discussing a poem or poem set with the audience in a Live and to encourage others to come on and read a poem of theirs too โ€” my own poetry slams, hope you tune in for those!

julie elder's avatar

Nick, when you speak of how little it takes to cause pain, I remember the first time I noticed that the breeze hurtโ€ฆwhat a weird-ass ailment!

Jaye Shands's avatar

Nick, thank you. The opening line of the poem reminded me of my first year after diagnosis; of living with Fibro and the sudden stabbing pains that cause falls and sometimes being unable to tolerate underwear. Itโ€™s a daily war we fight but one I fight to win.

J.R.'s avatar

I was also diagnosed in the 90s and was thrilled when NIH began studying it because most physicians thought it was made up.

Cynthia H Lee's avatar

Thanks for sharing, I appreciate understanding more about this debilitating disease

Carol Ann Power's avatar

Nick Paro, sir. Iโ€™m in kidney failure and my one mate has fibromyalgia.

You speak for us.

Sincere thanks to you for your beautiful poems and for speaking out about stuff that has gotten me and my mate labelled as malingerers.

You know the casual disrespect of โ€œyou look too good to be that illโ€.

Iโ€™m so tired of this bs.

Must we show you a โ€”โ€”โ€”sick note from our respective doctors-hmmph!

No way, Jose, I ainโ€™t gonna give you that satisffffaction or anticipppation,

Kindest regards and respect for chronic illness sufferers who donโ€™t look sick enough.

Carol Power

Johannesburg

South Africa

Janel's avatar

Hey guys ... I've had fibromyalgia for more than 20 years and NOTHING, and I mean

NOTHING, has worked. I just started reading a book that was recommended to me recently, and so far, it sounds VERY promising and without drugs. They're recommending an OTC med. You can download a sample of the book through the Kindle app (Amazon) or through Barnes & Noble. I hope and pray to God that it has some answers. Maybe we'll all finally feel some relief.

WHAT YOUR DOCTOR MAY NOT TELL YOU ABOUT (TM):

FIBROMYALGIA: The Revolutionary Treatment...๐Ÿ’–

MD RONY MIR's avatar

Love

Mary DeWester's avatar

I resonate. Fibro in my rear view mirror. Journey not pleasant nor growth producing. On the other side tho is a newfound freedom and a self respect from claiming my own space while teathered here. Hang tough. I extend my hand in frienship to you.

Carollynn's avatar

They tell us to lean into pain and you are doing that for all of us with your poetry - thank you. Also, check your medications for โ€œneurotoxin drugsโ€ (many common drugs).

JoyceM's avatar

I donโ€™t share your gift of poetry Nick. However I do share the misery of fibromyalgia. Your words are like a balm. Itโ€™s so hard for people to understand what fibromyalgia is like because โ€œyou donโ€™t look like youโ€™re sick โ€œ.

I follow all of your Substack content but wanted to give you a special thanks for this poem.

Natasha Komis's avatar

Hey everyone, I came across this GoFundMe for the Al-Saidi family, who recently evacuated Gaza and are now struggling to survive in Egypt. If you can, consider donating or sharing their story.