A Funky Disease

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One day, many years ago, I had a premonition of my future with fibromyalgia.

I was working as a dietary aid at a nursing home, washing my dishes from breakfast. That particular morning, I was so exhausted, grumpy and my body hurt terribly. Each plate seemed to weigh like a ton and all I wanted to do was go home so that I could pop a Tylenol 800 mg (that’s what my doctor gave me back then) and sleep.

I was only 28 years old and a newly single mother, trying to support my young daughter. I had been diagnosed with fibro at the age of 24, so it was all relatively new to me and only played a minor role in my life, an occasional pain in my ass. It wasn’t something that I ever disclosed to my employers, because I figured that they wouldn’t hire me if they knew that I had a funky, difficult to spell disease.

I finally finished my dishes (thank God!) and then grabbed myself a cup of coffee so I could take my smoke break. (Although I quit, I still want a damn cigarette sometimes!)

I was sitting there resting my weary bones when it hit me like a tidal wave of foreboding; what if someday, I couldn’t work anymore? What if this complicated and invisible illness became worse as I aged?

What would I fucking do??

A coworker came and plopped down next to me, lighting her cigarette and then exhaling dramatically like she did on a daily basis. She was much older than me and her personality was always over the top.

“What a morning!!”

I nodded, distracted by my own thoughts.

“What’s wrong?”

I couldn’t tell her the truth, because I knew that she’d spread the news around like cow manure on a cornfield, so I just said that I was having a really bad day.

“Yeah, we all have those. Maybe you’re coming down with something?”

“Maybe.”


Then at the age of 37, the fibromyalgia and my mental illnesses finally caught up with me. I had to stop working as a daycare cook (fish-sticks, anyone?) and apply fight for disability. I miss being able to earn my own living and being home each day gets old really quick, especially when you feel like pigshit on pumpernickel bread.

Maybe I just pushed myself too hard or I didn’t take my disease(s) seriously enough.

But there’s no sense in going back, is there? The what ifs in life are what do us the most harm.

Have you ever had a premonition of your future? If so, did it end up becoming true?

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Like Jo Jo the Circus Monkey

Although the words don’t come as easily as they used to, I’m thrilled to finally be able to blog here again. My goal is at least one post per week. When I think back to how I would feel guilty for missing even one day, I lightly smack myself on the forehead for being so hard on myself. I had the mindset that in order to feel useful, I had to type up something, anything, just so I could take a nap and not feel like my entire day was a waste.

It’s still really difficult to take extended periods of time just to REST and do absolutely jack shit.

Which is something that’s required when you have fibromyalgia or any other chronic pain/fatigue condition. I can’t tell you how many times I’ve been told to just “take it easy” and “get some rest.”

That shit gets old really quick, but it’s a key element of eventually receiving a good day now and then. (In which case I get all excited like Jo Jo the Circus Monkey and I end up overdoing it. Then the cycle begins anew.)

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Hey Jo Jo, take a fucking nap already.

I haven’t worked since June of 2012. If I’m doing the math correctly, that’s going on (carry the 4, um…) 7 years of not being gainfully employed. I had just turned 38 when I applied for disability. This August, I’ll be 45 years old.

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Preach.

Unless a miracle happens and they find a decent treatment or a cure for fibromyalgia…well, then I’d still have to face my mental health issues that continue to whip me around like a rag doll. I’ve also acquired within these last few years three new diseases such as the mega painful gout, osteoarthritis and diabetes.

The sense of shame has faded mostly, but I still become sad and dare I say a bit salty that I can’t even take a small part-time job in order to bring in some extra cash and to socialize with people that I don’t even like that much.

I’m in awe of people like my brother and sister-in-law (both freshly turned 40) who hold down demanding full-time jobs with seemingly little problems.

Then I remember when I was able to do that. I tell them often to hold on tightly to their health and to never take it for granted, like I did.

Having my boyfriend Steven, who is supportive and kind, has given me so much of my self-worth back.

Here’s a few photos of our adventures together.

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Steven at our bowling alley.

He’s showing off his new 16 pound bowling ball. I just got myself a new 6 pound ball.

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Looking at Christmas lights back in December. (And that’s me freezing!)

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A gorgeous view of Amish country.

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A choppy morning on Put-In-Bay last August, a Lake Erie island.

I’m not what asshat tried so desperately to convince me that I was; an needy, pitiful, inept invalid.

Steven doesn’t make me feel scared, like I should stay locked up in the house due to my shoddy health. He’s always encouraging me to experience life again and to find ways to modify my traveling to fit my limitations.

He’s made me feel more alive these last 9 months, in ways that I thought I never would again.

And on my really bad days, when I can’t do much more than lift my head, he’s right there to spend time with me and yes, to take care of me.

(Not on his phone sending dick pics to other women.)

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I need a gallon of eye bleach, please.

See, I promised you guys that I would find a way to get a jib in at asshat and I didn’t fail.

You’re welcome!

Quip Master

I rarely write about fibromyalgia anymore.

I think it could be due to the fact that I’ve fully accepted my reality, that for whatever purpose, I have this disease for life. I keep up with the latest news and information, but I no longer obsess over it.

I’ve grown accustomed to its nasty little face.

To the groundhog burrowing under my skin muscle spasms (hard to explain), the extreme fatigue, the pain of unknown origin, the charley horses and, of course, the brain farts.

All of it, from the minuscule symptoms to the big mama ones.

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Hark, what is that wretched sound? Tis only moi, screaming my ever-loving head off.

I was recently diagnosed with gout and much to my doctors delight, there’s a blood-test for that. I was given steroids that worked quickly, but once the 5 days worth of them ran out, it came back, again lighting up my big toe with a blowtorch. Now I’m on something else, but I was warned that one of the probable side effects could cause loose bowels.

Um, yep.

I’ve become honestly so numb to what my body likes to do to amuse itself.

Bitching and complaining won’t do me any good, so I just try to keep it as light as possible, making my little quips to steer the conversational direction away from myself.

I am a bona-fide quip master.