The Chronically Hopeful Award

My good friend Kim (who guest posted here for a spell) nominated me for The Chronically Hopeful Award.

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Thank you, Kimmy.

The two of us share a disease. You may have read one of my MANY posts about it…yes, that’s right, fibromyalgia.

Since I really don’t do these award posts anymore, I’m only going to thank the person who nominated me (I did!) and then answer her questions.

Because I’m a lazy rebel with brain fog.

At what age were you diagnosed?

I was 24 years old when I was officially diagnosed with fibro, but looking back on my youth, there were mild symptoms as young as the age of 5. I believe that I was born with it (or maybe it’s Maybelline?)

It didn’t become blaringly obvious until after I gave birth to my daughter in 1997. She was five weeks early due to a condition called gestational hypertension. My labor was induced in order to save both of our lives.

It was a miracle that we both survived. The trauma my body endured triggered the fibromyalgia to really show its fangs. It took me two years to finally find a doctor who knew what in the hell was wrong with me. I cried tears of relief initially, because it meant that I wasn’t crazy, after all.

What were your first thoughts after you received this diagnosis?

Fuck.

Do you think chronically ill people are expected to behave a certain way when they are in public?

Yes, I do.

I look perfectly healthy, unless you’re really paying attention.

I limp. I have awful balance. I walk slowly. I wince in pain most days. I nod off constantly and forget to use my big girl words. My short term (and somewhat long term) memory is full of black holes.

I stare off into space often and I become extremely overwhelmed without much provocation. When that happens, I’ll freak the fuck out and have myself a lovely panic attack.

But most people don’t look that closely at me. They’ve often judged me when I use my handicap parking thingy or when I’m at Walmart on the zippy cart.

They can kiss my flat ass, though. I might have an invisible illness, but it’s as real as global warming.

What is the biggest misconception about your illness?

I know that it shouldn’t irk me, but when people tell me that they hope I feel better, I want to scream “it’s chronic, damn it!”

But I just say thank you, because I’m usually a polite human.

There’s no decent treatment or cure, so I am stuck in this never-ending cycle of good and bad days, just trying to walk the line.

Don’t do too much or don’t do anything at all.

Have you seen any significant strides in the treatment for your illness? 

Sadly, no.

I got tired of bee-bopping around to doctor after doctor. My current physician and I are on the same page with medications. I want two things to help me manage my fibro; pain medication (200 mg of Tramadol a day) and my muscle relaxer (20 mg of Flexeril a day.)

I take Magnesium and B-12 supplements. I’ll use CBD oil sometimes, but I really don’t see what the big fuss is all about.

I also smoke some marihuana now and then, when I can afford to purchase some. I do tend to take breaks from it for months at a time though, within the last decade that I’ve been a “pothead.”

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I found this gem at an antique mall that I went to with my boyfriend a few weeks ago. The place was huge, so he was kind enough to push me in my transport chair.

That pretty much sums up this post.

Again, thank you so much Kim, you’re a true chronic illness warrior and I’m honored to call you my friend.

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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?

Knowing Him Now For Who He Really Is

I think the realization of why asshat went totally berserk with the abuse and cheating hit me hardest the day that I received the divorce papers.

One of the last things that he said to me was a clear indication and I’ll never forget the look on his face when he said it, almost regretful. (Not quite, just almost.)

“I missed the way you used to be.”

Ah ha! Before I got knocked over by a feather.

He missed healthy Merry. The woman who had her shit together, a mostly upbeat, energetic, humorous person, who could bring home the bacon and fry it up in a pan. He wanted his old Merry back, the one who didn’t cry constantly or think about killing herself, the person who didn’t sleep during the day. The person who could walk long distances without needing someone to push her in a transport chair. The human who wasn’t always in pain, who didn’t stare into space with a brain full of fogginess and fear, who didn’t have constant panic attacks.

That was his excuse…and for someone as empty as him, that was all of the fuel that he required for doing so many despicable things, especially leaving me in the ER after my suicide attempt in the summer of 2015 so that he could go fuck his whore.

Imagine that, if you can. There you are, puking liquid charcoal into a garbage can all alone, wondering why your husband/wife decided that you weren’t worthy enough of their love and support during such a frightening and lonely time in your life.

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No hand to hold, nobody to wipe your tears away…

As if I had asked to become sick, having no other choice but to quit working and apply for disability at the age of 37.

He always fucking knew that I had depression and fibromyalgia. I told him everything about me when we first met in 2002, only a few months after I left my first abuser, my now 22-year-old daughters father. It wasn’t like I had tried to hide it from him. He knew the risks of being with me. I had been an open book, candid along with my signature humor that I’ve always strived to use in order to lighten up unpleasant circumstances.

My 2nd anniversary of Discovery Day is coming up on July 31st. I’ve come a long way since that soul-crushing day and I have no plans on ever wishing him well on the rest of his journey here on earth. It wouldn’t be Christian of me to wish him pestilence, however I do hope that he never gets a full nights rest ever again.

Although knowing him now for who he really is, I bet he eats his hot wings, then falls right to sleep like a baby who had just been fed his bottle and gently burped.

How nice it must be to have no morals, conscience or self-realization. I’m not perfect by a longshot, but at least I have those three things going for me.