Jun 10, 2022 • 3M

N is for Nerve Pain

And a passionate Twitter community

 
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Jane Gould
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Hi!

The collage below represents the nerve pain (neuropathy) I feel in my lower legs and feet. 

When the pain gets too intense, I turn to a few things: raising my legs, cannabis, and deep, intense music. I’m on meds now that help, too.

Here are some of my go to pieces of music:

Yeah Yeah Yeahs - Heads Will Roll (Official Music Video)

clubbed to death extended - Matrix

Prokofiev: Romeo and Juliet, No 13 Dance of the Knights (Valery Gergiev, LSO)

Thank you for being here,

Jane & Emily

Share ABC's of MS

When it comes to Twitter, I’m a late adopter. While many people are jumping the HMS Twit ship due to Elon Musk’s threat of purchase, I decided to step aboard. It hadn’t appealed to me and I had no desire to be involved with something that was used as a tool to create the extreme division in America under Trump. But, my bestie in England is a Tweeting extraordinaire and told me on several occasions that I would find a community there, and Emily concurred, so @ABCsofMS was born.

I jumped in with both feet for a few weeks, and what I found was a passionate group MS’ers who share their experiences, listen to one another, and offer support. I discovered a lot more than 280-character political nonsense, and in a couple of weeks was surrounded by more than 700 people connected with #multiplesclerosis.

One day while attempting to distract myself from neuropathy, a poem came on my feed. It was written by @thoughtthistles, who describes herself as ‘Mostly bedridden anishinaabekwe who writes stuff. Book & film junkie. Loathing in Las Vegas. Happily married.’ 

The wind weeps. Daylight
lacerates & I'm finished
with my questioning of the
Creator. Answers tattooed
on nerve endings & pain
only exists because your brain
tells you it does.
Be thankful, they say.
If it's already broken
you don't need to waste energy
on a cure. The wind dies.

Wow. There it is. Neuropathy in a poem.

Nerve pain is a common symptom in MS but is new for me. When I had relapse-remitting MS, and for the first few years of secondary progressive MS, I never had any pain. I had MS for about 20 years before having pain, and for that I’m grateful. Hearing people with #chronicpain share what they live with every day blows my mind and makes my heart hurt.

I’ve taken a break from Twitter for the time being because for me the platform is too chaotic, but I love knowing the #MSWarriors are out there. 

For more information about pain and MS, please visit the National MS Society

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