Tag Archives: living with FMS

My get-up-and-go issues . . . and some RA

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It’s been a strange week. On top of the FMS I  happen to have a low-grade chronic form of mono–nothing “catching,” just a nuisance that rears its exhausting little head from time to time  when I am under a lot of stress. Benny’s illness did just that–stressed me out. He’s been to the doctor, he’s taking the antibiotics and seems to be slowly improving. Thank goodness!

I still have trouble sleeping at night and the last couple of days I’ve fallen asleep in the afternoon and slept until 9 or 10 p.m. I do actually seem to rest fairly well during those hours, but I am still worn out. Hence not a lot done around here. The Dishwashing Fairy better put in an appearance tomorrow, spouse  informed me.

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I’ve been busy with the Humane Society, scheduling spay/neuter surgeries,  and trying to promote what we do and our calendar photo project (“Send in those photos, ladies and gents. The pet calendar is going international”)  via FB (See link below).  Now attempting to untangle the organization’s website, which has been long neglected–honestly, I think it might be easier if I started all over again from scratch!

Also doing some work for Pecan Ridge, researching photo package prices for an event we hope to cover in mid-October in Tuscaloosa for my friend Naomi and her family.  And I need to work on a wedding music video (or as Benny calls it, “musical montage”) for the Harrells. But I only get so much done before . . .

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We finally got a decent amount of sunshine today, which really did lift my spirits. So much so I had to go out for a walk, even though the knees were balky. My hair was clean and fluffy and I had my favorite crushable hat on and yes, for a little while, I was feeling pretty good. Ya gotta grab for those feelings while they are out there, or so I have learned.

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And now the stormy weather is back, thundering all around and my poor old knees aren’t the least bit happy. Very tired again. Maybe I will sleep some tonight.

Anyway, sorry for being a bit absent from things RA.  Maybe I will be able to make it up to you later . . . or perhaps, even a bit now.

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Meet the dwarves I know only too well . . . the Seven Dwarves of Fibro!

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And they aren’t nearly as appealing as Thorin, Kili, Fili, Dwalin and the rest.  Here’s the seven dwarves of Fibromyalgia Syndrome (FMS).

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I am currently battling a full-blown grade-A Fibromyalgia Syndrome (FMS) flare-up. There’s the searing pain that seems akin to a red-hot poker being pulled from a roaring fire and pressed firmly against the back of my neck, downward between my shoulder blades to my back and my hips. The throbbing in my jaw, teeth, temples, behind my eyes.

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There’s the so-called “fibro fog“–that frustrating thick haze that sometimes envelopes my brain, impairs my concentration, attacks my memory, makes me feel stupid and useless.

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And the weariness that seeps deep into my bones, sapping me of all energy, mental and physical.  My vision fluctuates; on bad days like today I have to wear reading glasses with my bifocals.

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There are the tears that insist on coming and make me feel like such a bloody coward.

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There’s that  knowledge I will never live another pain-free day in my life, that this invisible illness and I are bound together until the end of my days. Oh, it’s not fatal; I won’t die from it. But I will die with it.

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I don’t want pity, I am not asking for a miracle cure. Honestly, I’d rather first see a cure for cancer.

I  do ask for compassion and understanding and a non-judgmental attitude towards anyone you know–a loved one, friend, neighbor, classmate, co-worker–who is living with an invisible illness and dealing with their own nuisance dwarves.

This isn’t like a cold or the flu you’ll get over. It’s not the normal aches and pains from working out or growing older. They aren’t being lazy or trying to shirk their duties. There’s no one medication or course of treatment that works for every FMS patient.

Some therapies are not covered  by insurance; for those of us without insurance it can be even trickier getting the medical attention we may need. And so we take it one day at a time and some days, we congratulate ourselves for even getting out of bed.

Your life is irrevocably changed by conditions like this one. You try to stay positive, to engage in activities and interests to keep your mind off the symptoms, but it is always there. It waxes and wanes; it never truly leaves you. Foggy, Sweaty, Hurty and the rest are always hiding around the corner, ready to make an attack.

You really will never know what it’s like until you’ve experienced it firsthand; but I wouldn’t wish that on you.  Do your best to educate yourself and be empathetic.  And never assume you know what sort of pain and frustration another human being is dealing with. If I’ve learned anything from my personal lessons in the poetry of pain, it’s to never judge.

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Thanks for reading, and I promise to return to Richarding before too long.

To learn more about FMS, visit these sites:

http://www.afsafund.org/

http://www.fmaware.org/sit

http://www.fmnetnews.com/e/