The Worst of the Worst

I’m at the bottom.

I told myself I’d been flaring for two months. That my meds weren’t adequate, not that they ever are.

But it got worse.

My hands and arms are shaky with a tremor. I think of it as my body’s “I’ve fucking had enough and I’m shutting down” mechanism. Don’t try to apply makeup. Have fun making a sandwich. Better use those plastic plates and cups because shit’s gonna be hitting the floor, literally.

I’m in a pit.

My pulse is racing. I tell my muscles to relax, that it’s ok and I’m not dying. That contracting and tightening up will only make things worse, for the love of god.

My medications aren’t touching this.

Breathe in, breathe out.

I’m sure our flares are different but there’s probably a lot in common. I can’t fucking do shit. (Excuse my language—curse level is high today.) I’m lying in bed and hoping to die, but not really because I’m not suicidal. But I figuratively want to die. Anything to make this go away. I’d like to sleep for four days because that’s about the amount of time it will probably take this flare to calm down.

The trigger for this flare was hilarious. Didn’t see it coming from a mile away. It was a pelvic exam and Pap smear.

The root of all things malevolent in my body is my pelvis. Endometriosis, chronic pelvic pain, a slew of infertility surgeries. The final surgery that was supposed to be so trivial, so easy and painless, that left me in chronic neuropathic pain. I’ve hardly made it off the couch since then.

I’ve done two years of pelvic PT with three different pelvic specialists. They were excellent. My body’s response was not. I was dropped by my two long-terms PTs at the one-year mark for lack of response. Basically, I was hurting their numbers. When pain level one year ago equals pain level now, the therapist looks completely ineffective. I don’t blame them but their employers would.

Although the therapists didn’t help with my overall pain level, they did help with chronic pelvic floor tightness. Excuse the TMI, but their internal work, which was basically pressing on spots until the muscles relaxed (excruciating), apparently worked a little.

I haven’t had PT in several years and apparently my pelvis is a no landing zone now. I never anticipated a pelvic exam causing so much pain, and for crying out loud all I wanted was a new hormonal birth control.

The new-to-me gynecologist first had trouble finding my cervix. Let me say that again. The OB/gynecologist who has examined women’s reproductive organs for 25 years could not find the end of my vagina. There are only so many places a cervix can be, right? After a minute (felt like 10) of rooting around the doctor found my cervix facing up, or facing down—whichever is the rare variant. NB: my cervix has never hidden before. I blame fibro.

I left feeling sore but ok. 24 hours later and I can hardly move. Since my pelvis is the root of all things evil, I have pain everywhere now. I’m sure it would be similar if I broke my arm, but I think my pelvis is more capable of bringing down all body systems than the Spanish flu of 1918.

I’m at an 8 of 10, or a 7 on a more conservative pain scale. I’m capable of typing sentences. Speaking would be harder.

It’s time for more pain meds because my ability to string words together is going downhill fast. I don’t have extra meds for this. Where are the “here’s a few extra pills per month because we know there will be [literal] storms where your body acts as a weather gauge, or you will walk 20 minutes on a day you shouldn’t have and you will flare for days afterward”?

Meds that I don’t have have been taken. A future day will suffer because I won’t have enough meds. Oh, and did I say that meds aren’t touching this flare? That might be an exaggeration. I think they’re taking it from an 8 to a 7.75.

Where does this leave me for the rest of the day? It leaves me with constant worry about not having enough meds. Should I take them or shoudn’t I? Breathe. Watch TV. Read blogs. Feel guilty for not crossing off anything on to-do list. Try not to panic and try to slow down every instinct that tells me I should be in flight or fight mode.

And try to parent. Thank god my kid has school today. After school will be lots of TV and me faking it. God, that will be a post of its own.

I hope you aren’t flaring today and if you are, know that you’re in good company.

Oh yay, things just got worse here. I’m having sheetrock repaired in the room above me and it’s so loud it’s making my toes curl. Hello noise sensitivity! So glad to see you on this shitty morning.

Queer Eye for the Fibro Girl*

What makes me special enough to be on Queer Eye?

I’ve spent many recent day and nighttime hours distracting myself from pain by watching Queer Eye: More Than a Makeover. For those of you who haven’t seen it, it’s quite different than the old Queer Eye for the Straight Guy show. It includes women, for one thing. It is less about making a person into a pretty package to reveal at the end of the show and more about making the person feel worthy of changing their life for the better. Makeover candidates tend to be selfless in some way. Maybe they are completely dedicated to their teaching career, or their arts community, or otherwise serving others and putting their own needs on hold. Their appearance isn’t appalling in the typical pre-makeover way and appearance is only part of the focus.

Watching the show has me fantasizing about what would make me a makeover candidate. What’s my hook? What would make the audience curious about me and wanting all the best outcomes?

It took me about 60 seconds to realize with an eye roll that my hook is fucking fibro. My life isn’t extraordinary. I don’t spend 16 hours a day trying to end homelessness or show underprivileged youths that they have value. I’m a stay-at-home mom to one young kid. I work from home about 10 hours a week. I’m middle-aged and have average looks. I clean up well and occasionally display a personal style.

What makes me stand out is that I’m in excruciating pain most of the time. The rest of the time I’m just in a lot of pain. I think people without fibro have trouble imagining having pain all over, other than having experienced the flu. I’d explain my pain to the Fab Five by saying it’s like having hot lava coursing through my veins. The lava pools in my hips and shoulders, with non-fibro regular person aching pain in my back and neck. When my meds aren’t controlled, the lava is everywhere and courses to my extremities, making my feet feel as if I’ve been hiking for 100 miles.

Then the questioning would begin. Have you tried exercise? Yes, I’d say ruefully, as if I haven’t answered this question dozens of times. I’ve fucking tried exercise. I’ve tried walking, yoga, physical therapy, swimming, and hiking. Right now I’m in a two-month flare and can barely walk around the block.

“What happens if you walk around the block?”

“The hot lava gets hotter and I’m barely able to take care of my daughter for several days.”

“What if you do a little bit of walking every day?”

“If I’m flaring, it will make the flare worse and I could end up in the ER. I don’t have enough pain meds to cover the pain it would cause. It wouldn’t help overall. It would make things worse and worse. If I’m not flaring, it might be ok or it might not. I’ve tried to increase my walking for the past seven years since I’ve had fibro and I can’t get beyond half a mile about three times a week. Slowly.”

Of course, the Fab Five are energetic and young and probably wouldn’t be able to conceptualize this. I wouldn’t blame them. I used to run half marathons and before that was a dancer. I thought exercise could improve everyone’s quality of life. The elderly should walk a mile a day! Everyone get off the couch and do something!

On my episode of Queer Eye, the audience would at least see that I was trying. I get out of bed for myself and for my daughter. I show my family and friends that I can show up at least half the time. I take care of my daughter. I can paste on a smile and be a decent friend. I try.

Some of the audience would get it. Who knows what percentage of people watching were in chronic pain but I’m sure it’s large. Many are undertreated. Their doctors don’t know how to address their condition and they’re victims of the opioid crisis. Not victims in that they’re addicted to opioids but that because of all the attention and legislation related to the crisis, they cannot get adequate pain treatment. Opioids could help and maybe their doctors prescribe some. But rarely enough.

I’m one of the undertreated. I don’t know how I’d tell the Fab Five without getting on my soapbox about the opioid crisis and its undertreated victims. Who wants to go on international TV and talk about how they’re taking a controlled substance that some people would steal for? That my peers, those who don’t get it and those who kinda do, would judge me for? “She’s taking opioids while she takes care of her daughter!” “How is she still driving?” “She must be addicted.” “She must not be trying hard enough.” “Has she even tried yoga?”

I’m not that brave. I do talk about my struggles with my friends and trust them with my story. I’d be humiliated if everyone in my life knew. If I were on TV in a tell-all, I’d get scathing emails and Twitter posts about what a shitty mother and human being I was. Let’s face it, the world is harsh. And there’s that side story that says that opioids aren’t supposed to be helpful for fibro, anyway.

So the Fab Five would get an edited version of my story. Yes, I take medication for fibro (Lyrica—it’s approved and not a narcotic! I’m not a bad person!). Yes, I’ve tried acupuncture and meditation and yoga. The audience would shake their heads and feel sorry for me. And perhaps wonder if my child would be better off with her grandparents.

I’d get a makeover. The Fab Five would give my house, where I spend 99% of my time, a facelift and I’d get a new haircut and wardrobe.

Karamo would talk to me about how I really am worthy. I’m a contributing member of society. I’m a worthwhile person because I exist. Even though I’m grumpy, and somewhat depressed, and unable to give back to others.

I guess what I’m getting at is that I don’t know my worth. I know my daughter and family need me, pain and all. I know my friends would miss me if I weren’t here. But how am I really making the world a better place? I’m not conquering hearts and minds one blog post at a time. I’m not rallying lawmakers for legal marijuana and fewer restrictions on opioid prescribing. I’m a progressive Democrat who’s not helping candidates win elections other than by casting my own ballot.

On my Queer Eye show, I’d have my breakthroughs and tearful moments. It would look like the group changed me and that I was able to turn over a new leaf. Maybe I would.

Spoiler alert: I’m not going on the show. But it has me thinking about self-worth. How do you know your worth? Really know that you’re worthy? Worthy of love and not just a crotchety immobile lump on the couch? I try but I’m not there. When everything I have goes into being a decent mother and wife and “decent” is questionable, what is left to give?

*"Girl" because it sounds catchier than "Middle-Aged Woman"