Category Archives: Fun With Fibromyalgia
I may have mentioned a time or elebenty hunnert that I live with an enormous amount of daily physical pain.
I’m beginning to think I may actually be a reincarnation of the goddess Odyne. Which reminds me, why can’t I be like Athena or even Artemis? I’d like to be able to say I possess badassery or indescribable beauty because I’m a descendant of the goddesses of both, but nooooooooooooooo I have to be Odyne, the goddess of pain. Oh well, at least I’m a goddess, even if I don’t rate more than a mere mention in mythology and lack a Wiki page of my own.
Is there a goddess of sleight? Because I’m pretty sure Odyne has a valid grievance here, and I’d like to talk to someone about that.
And, I have gotten waaaaaaaaaaaaaaay off track.
See, that’s what pain will do to your brain.
So, the sources of my pain are numerous and boring – eight ruptured discs, spinal stenosis, fibromyalgia, arthritis, blah, blah, blah…
Most of the time a liberal application of heat, and the liberal downing of pain medications I take, keep me upright, mobile, and not feeling all stabbity to the world.
This week, though, it’s been different. And by “different” I don’t mean ‘oh joy and happiness, I don’t feel like I’ve been run over by a truck!’ I mean it’s been ‘holyfeckballsoffirebreathingdragons, what.the.feck. is going on?’
My sciatic nerve, heretofore a quiet little dude that I gave nary a thought to, is pissed.
Royally, royally, pissed.
He’s decided to show me how pissed he is by setting my right leg on fire, while simultaneously stabbing me from ass to heel with a hot poker.
This is going on all. the. time.
It’s actually a breathtaking kind of pain. As in, I gasp with each wave of pain, am nauseated most of the time from it, and cannot focus on what anyone is saying to me until the wave subsides and I wait anxiously for the next.
Even upping the pain meds is not dulling it much. And they are strong motherfeckers, let me tell you. Sciatic-Bob (yes, I named him) is stronger.
I know the inflammation will pass, and I really wish I could take anti-inflammatories but they make me pukey, I just wish it would pass sooner rather than later.
This gettin’ old shit? Ain’t for wimps.
There are a few blogs I read all the time. They range from the silly to the stupid, the ridiculous to the sweet.
And then there’s Dr. Grumpy.
He claims to be either a neurologist or a Yak herder. Some days, I can’t tell which is true.
Other days, he rants about hilarious patients, formidable hospital administrations, stupid insurance companies, and his teenage children.
Mostly, he seems slightly out of touch with the Average Joe.
Which leads me to believe he really is a Yak herder, and lives in Nepal. Or a neurologist with little comprehension of what people not making six-figure incomes have to deal with when it comes to health care.
Honestly, I can’t tell.
In general, though, I like him. Not that it matters to the doc, but there it is.
The comments on his blog are often enlightening, too.
Other doctors, PAs, pharmacists, and other healthcare professionals chime in and it’s those people I take issue with the most.
I have lamented, ad nauseum, about the “invisible diseases”, the pain-centered illnesses like fibromyalgia, CFS, arachnoiditis, and CRPS and the treatment sufferers get at the hands of callous health care people.
I get that one can become jaded at the constant barrage of people looking for the pharmacological quick fix. I. Get. That.
What I don’t get is how a doctor, or any other healthcare professional, can look me in the eye and dare to tell me I’m not sick, I’m not hurting, I’m making it all up.
Don’t get me wrong, Dr. Grumpy never goes there. But his followers, the ones who comment, they do. Often.
I always try to point out their ignorance, and am sometimes met with hostility. Sometimes with disdain, and sometimes with arrogance.
I’m rarely treated with compassion.
And that’s what’s wrong. We, the people suffering from the silent illnesses, we deserve the same compassion as the cancer patient, the anxiety patient, hell the “every” patient.
I’ve given up trying to get that compassion from the cold, hard, world-at-large. I’m very lucky my pain doctor is understanding, and that my pharmacist is someone I’ve known for over 20 years. I rarely, if ever, have to deal with the sideways glances and raised eyebrows at my monthly ‘scripts that keep me upright, productive, mobile and happy.
I’m one of the lucky ones, and that too, is so wrong.
Just yesterday, a single sentence from a Facebook friend led me to ponder something I take for granted.
I am a chronic pain patient, most doctors’ worst nightmare, and I am tired of being treated like a second-class citizen.
Among the litany of ailments, which I won’t list here, I have fibromyalgia.
I can see the virtual eye rolls from those who think that fibro is a “garbage can” diagnosis meant to shut up the patient who presents with debilitating pain, exhaustion, and memory issues. And, it was just that. Until some dedicated scientists and doctors began to really study the disease.
All of this has little to do with this post, but I use the first few paragraphs to set the stage for the real reason I’m writing.
It’s the shame, the guilt, the overwhelming feelings of inadequacy that so many chronic pain patients experience.
We feel it every time we have to explain to a doctor that yes, we hurt, and yes, we understand your lab work doesn’t give any indication why.
We feel it every time we encounter a pharmacist, skeptical as to why we need yet another month’s supply of an opioid medication.
We feel it every time a family member or friend – always well-meaning, of course – tells us about the latest breakthrough in treating chronic pain with home remedies like beet enemas and anecdotal evidence that it worked for someone’s brother’s wife’s mother.
Or worse, when friends and family tell us we just need to get up and do more…everything. Walk, exercise, go vegan, deny gluten, and drink lots of water. I mean, if we did all that we’d be fine, right?
We look normal.
We (usually) act normal.
We desperately want to be normal.
We don’t want to wake up every morning more tired than when we went to bed.
We don’t want to hurt from the top of our heads to the tips of our toes.
We don’t want to feel like we’re slogging through molasses that gets thicker as the day wears on.
And so many of us don’t want to have to rely on a pill to get us through the next day, the next few hours, until we can take another to dampen the pain to the point of making it possible to function for a while.
Mental health gets a bright spotlight, and almost everyone is understanding and caring. Take a pill to elevate your mood, or keep you from going all stabbity? That’s considered a good thing.
Chronic pain patients don’t always get that same TLC.
And we need it.
You know how some people walk around parking lots, malls, and the like giving out cards that say “I’m deaf and dumb, please help”? Sometimes those cards have little American flag pins attached to them, so if you give the person money you get something in exchange and the person doesn’t feel like a beggar, more like a street salesperson.
I think we, and by ‘we’ I mean all of us who suffer from a chronic pain condition, need to have pamphlets made up with all of this information on it:
That way whenever we meet someone new, or have to remind friends, coworkers, and family of our daily struggles we can just hand them a pamphlet.
No one feels guilty, no one has to make embarrassing excuses for why they can’t ____________________ (fill in the blank), no one has to say anything.
Just hand them a pamphlet.
In fact, I might just get a full-body tattoo…wait, that would be weird. “So, how are you?” would be met with me lifting my shirt and pointing…and then the asker might think I’m pregnant and pat my belly, or worse stand there reading my belly.
Not to mention how painful a tattoo of that size would be, and I already have enough pain in my life. Honestly, that’s why I wanted to get the pamphlets made in the first place.
Nevermind on the tat.
But someone get on the pamphlet project, will you?
So, after a week of mounting stress – at work we have VIPs visiting so we were cleaning like the EPA had declared this place a hazardous waste site, and at home – where years of arguments between the front of my house and the back of my house resulted in their actively trying to move away from one another (honestly, I don’t know what started it, but I suspect the front bedroom hated the color green it was painted and wanted the green the master got but it didn’t warrant that level of green, because…Master Bedroom) in opposite directions, causing what we lovingly referred to as “living on a fault line”, but what is in truth called “foundation settling” caused the sewage piping under the house to sag and no longer do its job, unless its job was now depositing sewage in showers, sinks, toilets, etc. resulting in a frighteningly expensive repair and huge mess of my yard – I suddenly developed the motha of all fibro flares.
This one was complete with the worst case of fibro fog I have ever had.
In one day, I…..put the dog outside and forgot about her for two hours, spent about 5 minutes looking all over the house for her (she’s a GSD, so kinda hard to misplace if you are not me), panicked because I couldn’t find her, finally opened the back door where she stood waiting to come in, hot and thirsty….asked the boss the same question, three times in a row (yeah, try to explain that without sounding like you’ve been drinking at lunch), put my keys inside the bag of cat food – and I wasn’t even feeding him at the time, nearly left the house shoeless, did leave the house without my breakfast smoothie, and completely forgot when I last took my meds so went hours in agony because I was afraid I’d OD if I took any more, slept three hours after work and then when I woke up I could not put two words together coherently, finally fell into bed at 8:30 (this after a three hour nap, mind you), and prayed the next day would be better.
And, it was.
Except….anyone seen my keys? Oh, right, check the cat food.
So, been having like the solar flare of fibromyalgia flares in the last…oh, I don’t know, month? Two months?
I lose all track of time sometimes.
Anyway, it builds like anticipation before a big date, only less fun and with lots more pain, and then the crash arrives and the waves of pain knock my ass down.
That’s where I’ve been.
Where I am.
Even my hair hurts.
But the worst part is the rib pain. My rib joints get inflamed, and then it hurts to breathe so I decide feck it I’m just not going to breathe anymore and that lasts about thirty seconds before my brain kicks my ass and tells me what a dumbshit I am, and of course we are going to breathe so I take a deep breath and shriek/cry from the pain.
It’s exhausting, and I really think my brain should stop arguing with me and let me run the show, but does she listen? Hells no.
She insists I do things like breathe.
So nothing seems funny, nothing seems interesting, and everything makes me stabbity. This is not a good time to piss me off.
So, say something to make me laugh…wait, scratch that…say/do something to make me smile so I can forget this shit for a minute.
I promise I’ll be back as soon as my body stops trying to murder me in my sleep (and in my awake for that matter).
On Saturday the flat of herbs, onions, and garlic that I optimistically bought in early March, thinking I actually lived in Texas and not in Minnesota only to find out that I did, indeed, live in Minnesota this year although it looks just like Texas and I don’t recall moving, but anything is possible.
Anyway, where was I?
Oh, right…Saturday I finally got to plant my kitchen garden in my little 6X4 raised bed that hubby built for me a few years ago and our new dog had decided made the perfect place to create a hole to snuggle down into, completely ignoring her expensive dog house with the fluffy bedding inside, creating craters here and there that I then had to redistribute the dirt over and smooth flat before planting.
Once that was all done, and all the herbs, onions, and garlic was planted I added a garden fencing material that looked substantial in the picture and advertisement, but turned out to be about as stout as a bath mat, but it was all I had and I wanted to keep the dog out of it so I put it up around the garden and hubby helped prop/anchor it in place.
Anyhoo – after three hours of digging, raking, planting, watering, and fence-ing I was tired and sore and a little sunburned, but I had a lovely little kitchen garden in the making.
On Sunday, I could barely move and I had a migraine. The pain was intense, because all my fun had triggered a severe fibro flare.
Apparently, this was the universe’s way of thanking me for going green or something.
And, today, the wind is blowing at about elebenty-hunnert miles an hour so when I get home I expect the fencing to have blown away from the garden to become a giant chew toy for the dog, she will have redistributed plants and dirt and reclaimed the bed, and I will attempt to salvage what’s left of my herbs, onions, and garlic.
Tomorrow, I’ll have another severe fibro flare and will have to work ten hours.
Well played, universe.
Well played indeed.