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!

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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.

Woe Is Me

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When I push my body to the limit, it repays me with pain and exhaustion. I’ve accepted this fact as a part of my reality. I’ve also accepted that others will not quite grasp the realness of my disease due to the fact that I look healthy on the outside.

I have to know when to stop and take a rest. It’s my body, after all. I’m the only one living inside this skin of mine.


I don’t want to alarm you guys, but my anxiety and depression is making a comeback. I’m still an extremely damaged person, even though I do my best to control it.

Hugging my mom is like hugging a living skeleton.

Change isn’t a simple process. I’ve removed toxic people from my life. I’ve changed my mindset and have come to finally realize that I deserve to be treated with respect and kindness (we all do). I deserve to get back what I give to others. If people cannot do this, they have to go. It doesn’t matter how long that I’ve known somebody.

Time means jack shit, one month or 28 years, it makes no fucking difference.


I read yesterday that the majority of people who have fibromyalgia are also empaths. This makes a whole shit ton of sense to me. I mean, where else would the negative emotions go if you don’t know how to rid yourself of them? They get absorbed into our flesh and bones, manifesting into a lifetime of chronic misery.


I feel like hiding today, away from the world. I want to wallow in my own melancholy stew, flavored with a seasoning packet of woe is me.