The “All You Can Eat” Salad Bar;
Take a Stroll Through the Most Concise Description of a FibroMYalgia Flare I can Manage
There’s no succinct answer to give when I’m asked to describe what a flare feels like. The shortest way I can think to illustrate it is to have you imagine an “All You Can Eat” salad bar. You choose your base, say rice or romaine lettuce. Those represent pain or fatigue. Sometimes it’ll be one of the two, other times a blend of both. Next, pile on your toppings. Sprinkle on a little nausea, a spoonful of dry eye, and a couple heaping scoops of hot flashes and brain fog.
Don’t forget, the “all you can eat” aspect isn’t optional. You must eat ALL you can until you can’t stand anymore. Even then you may have to pile a little more on your plate. There is no choice in the matter. Like our illness, no such thing as “too much“ exists, no limit to excess.
A flare is an all-out binge on symptoms & side effects. If you read on, my hope is you‘ll come away with a sense of what each can feel like during what we call a Fibro Flare. Then you may be able to take a step back and view the collective pieces as one big boulder we manage to carry.
“A flare is an all-out binge on symptoms & side effects.”
If you have someone in your life fighting their Fibromyalgia and Chronic Fatigue Syndrome, I applaud your devotion to learning more about their struggle. The experience of a flare, although describable in words, is never truly known unless experienced. However, that doesn’t mean our healthy allies can’t seek to gain insight. Every person’s Fibromyalgia is unique, as highlighted by the word “my”, but there are several common issues we all share. Consider this a crash course in Spoonie Symptoms.
My strongest ally is my wonderful husband, Frank.
How I earned my Spoonie-Card
We with this disability are only 3-6% of the U.S. population, around 10 million. Of those, 7% of us have Fibromyalgia as Juveniles, about .21-.42% of the United States. I was one of the rare, fortuitous people to develop Juvenile-Fibromyalgia. Mine reared its ugly head for the first time when I was 15, a sophomore in high school. I‘ll never forget the deep, burning pain above my right SI joint in the middle of a school volleyball game. Test after test showed no injury yet the misery brought me to the ER regularly, never to receive any relief. It was the first trigger point I’d have. Now at age 35, my years WITH the illness have surpassed those WITHOUT. 20 years and I’m still here. There is hope.
Besides developing it so early, and maybe because of it, my specific Fibromyalgia is quite severe. Although that means my symptoms are more intense than some other Spoonies, it likewise means I’ve had more time to figure out how modify my way of life accordingly. It’s a continuous work in progress, but I’m up to the challenge and hopeful my experience can help others.
Fatigue, it’s just “being tired”, right?
Chronic Fatigue isn’t like a healthy person’s “tired”.
It’s like a healthy person after running a 10k, taking a double-dose of Nyquil, followed by 2 shots of tequila, and only then babysitting a set of toddler triplets after they’ve each eaten their own cupcake. Imagine the exhaustion after all that, and when you lay in bed to rest, your brain is wide awake and sleep doesn’t come.
Yeah, that’s about right.
Fatigue is an overpowering feeling of sleepiness without the actual ability to sleep. We can’t rest our bodies, so the fatigue becomes a cyclical symptom, even chronic. Coupled with pain, we are depleted of any energy we might have naturally been able to coax out. We are forced to choose between showering or vacuuming, wiping down the counters or cleaning the litter box, making breakfast or folding laundry. This may seem melodramatic, but it’s very real and not at all an exaggeration. It’s why many of us are no longer able to work a regular job, if any job at all.
Fatigue leads to Fibro Fog, the state of our brains after days or weeks without sleep. We struggle to comprehend simple concepts that are ordinarily no problem. In these episodes word recall is a challenge. Although normally articulate, suddenly we can’t remember what to call a spatula.
My husband and I affectionately refer to this “game” as Fibro-Charades. It’s not just word recall, but forgetting why I walked into a room, where I set my mug of tea, and taking 2 hours to order groceries online.
Brain Fog can be exceedingly embarrassing. I am not an “Air-head”! This is something I, we can’t help. The harder we try to focus and keep it together, the worst the fog becomes. Although we may look flighty, forgetful, spacey, or even careless, we are trying. The words coming out of our mouths can appear to be a tangled mess of ideas with no beginning or end. But that’s how they exist in our heads at that moment. Please, be patient.
When Brain Fog is bad, I can’t cook or drive safely, and usually have to stay home out of regard for my well being. Wandering around Chicago alone when I am not thinking straight is a risk we recognized I shouldn’t take. It wasn’t an easy decision to make, but a necessary one. I used to push myself when I was foggy. But, I stopped that because I‘d end up with my car towed after parking in the wrong spot or missing my stop on the El train and ending up on the other side of town. Sometimes I‘d forget my credit card at a restaurant or drive home from the pet store after leaving the bag of food at the register. It’s challenging to concentrate on the important things. So, for my safety and that of those around me, I don’t get behind the wheel anymore during these flares. It’s yet another thing Fibro forces us to give up during a flare, and sometimes permanently.
Pain? You don’t know pain.
Outside a flare, Fibro pain is constant, just at a lower grade. It’s my silent passenger on this ride of life. During a flare, it reaches over and takes the wheel. The ache in my shoulders and neck goes from dull to stabbing. Crossing my legs burns at the place the two make contact. My eyes feel full of cornstarch and sand, dry and scratchy. The spot where my rear touches the chair, bed or couch is hot and tender. It ain’t glamorous.
Imagine this: Recall a time in the middle of the night when you’ve woken up to your arm “falling asleep” from sleeping on it wrong. You know that gross sensation just as it begins to wake? Now blend that with the pain of a “Charley Horse” in your calf and then you can begin to understand the leg pain felt during a Fibro flare.
But, please believe me when I say that I wish no healthy person to ever have to experience this pain. Having empathy doesn’t require you to be miserable, too.
I don’t want to overwhelm you as you dip your toe into this purple pool, so I’ll just give you this small example for now. However, this photo was taken the morning of a recent flare. Misery isn’t so photogenic, but it is survivable.
As I pointed out before, driving can be dangerous during a flare. Not only does “Fog” make my focus unreliable, but dizziness doesn’t help either. During a rough flare dizzy spells are unpredictable and appear when I least expect. They happen not only when I stand up too quickly but also while sitting at the computer, brushing my teeth, and reading. I get the wobbles when making eye contact during a conversation, and with eyes closed as I force myself to fall asleep.
Along with the dizziness comes serious nausea. Remember “the spins” back in your college days? Imagine those without the fun of partying first! This makes having an appetite tough. Not eating leads to low blood sugar, feeling lightheaded, and more episodes of vertigo. It’s another cycle of a symptom. Sound like fun? Ah, it ain’t that bad when you are used to it, just a little annoying and inconvenient.
The Nose of a Bloodhound Dog
Another charm of this illness is a heightened sense of smell. You can call it pregnancy nose, without the pregnancy. In our house we declare, “the nose knows”. One would be unwise not to listen when I mention I detect smoke, dog stuff on the bottom of a shoe, or something solid in the litter box. Every scent or odor is amplified when our Fibromyalgia-laced brains process them.
That is wonderful when smelling a bouquet of roses, a fresh plate of pesto, or a slice of lemon and lavender cake. I believe it to be an asset for me as a chef and foodie. The flavor of food is more vivid because of my intensified ability to smell. It’s not so great when being bombarded with someone’s foul breath, musky cologne, or the stink of a Chicago alley.
All that “information”, good and bad, contributes to the nausea we Spoonies already battle. So, I’ve found a simple trick that doesn’t solve the problem, but helps. Sephora sends me tiny sample bottles of perfume with every order. When I find one I like, I keep the little vial in my purse. If I’m stuck in line behind someone who has an offensive aroma, I spray a bit on my wrist and just take that in. Stores such as Macy’s and Nordstrom often give out samples for free, especially when you make a purchase. They can be a saving grace in stinky situations.
The Blues, Don’t Ignore Them
Two weeks of the Spoonie version of “tired” can elicit a state of loneliness, static and isolation. Fatigue leads to depression and a lens through which we thus see things. It’s tough to reach out for support. This is specially so because we realize nobody can cure our illness or break the flare. But it is helpful in repelling these feelings of sadness and loneliness. Survival is in the support system we build around ourselves. We must reach out. But, you have to know help isn’t going to look like other types of aid. It‘s different from a friend coming over to do the laundry or bring a bag of groceries. Crawling out of these blues isn’t about a friend actually doing something tangible for us.
Earlier this month I reached out to my good friend Dominique, who is still learning about my illness. My husband wasn’t reachable for most of the day and I took a chance in reaching out to her. Not only was she loving, curious, and supportive…
… but she checked in on me the next morning as well.
We are lifted out of the blues when we‘re able to compel ourselves to reach out through text, email, or phone call. A simple reply from a friend or family member acknowledging us can break our solitude. Connection to the outside world is more valuable than gold when we haven’t been strong enough to leave our home (or bed) for days on end. That communication can literally be lifesaving. It forces us to be accountable for a semblance of self care just by saying out loud to someone else that we have the blues.
“Danish researchers looking at death rates in women diagnosed with this chronic pain condition found that the risk of death from suicide was ten times higher than in the general population.”- Genevra Pittman, Fibromyalgia comes with a suicide risk: study, Reuters
Disappointment can also lead to the blues. I take most of my medications in the evening, so my pain level is at its lowest around 9pm. The respite from immense discomfort momentarily makes me less overwhelmed by the realities of my illness. I head off to bed with all the hope in the world. There’s this eternally naïve view that after 12 hours of “sleep” I’ll wake feeling better and ready to tackle my wish list. (What’s on a Spoonie wish list? Laundry, putting away the dishes, and having enough energy then to shower.)
The reality? I go to bed, have anything but a restful night, and wake knowing my list will go undone another day. Going through this cycle day after day, and sometimes week after week, makes hope harder to hold. Yet again, “The Blues” show up. After a week of not being capable of doing much more than brush my teeth, shower, and call in an order for dinner, I get down on myself. The internal dialogue sounds much like this:
I’ve rested too much, wasted too many groceries I bought intending to cook, spent too much money on take out. Why should I be any further self-indulgent than I already have? Time is being wasted. Things need to get done. Friends are sick of my calls canceling on them. I need to stop being lazy and get up and exercise. I look grey, sickly, like a mess. Try harder!
This is an example of irrational, negative, and counterproductive self-talk. It’s the depression, judgment, and cruelty with which us Spoonies treat ourselves. We kick ourselves when we are down rather than reach out to friends or family for a helping hand.
I am not perfect at this, but I work to recognize when I’m beating myself up for things outside my control. What would I tell a friend saying those words to him/herself? I’d say to be kind, take a step back and realize they are doing the best they can with the circumstances they’ve been given. It’s easier to advise others than do so myself. But, in this instance trying counts.
You are an Ally, Thank You
If you’ve read this far, you are not solely an ally, but a devoted one. You could be the spouse, parent, or friend to a person with Fibromyalgia. Maybe you have a colleague who seems to call in sick frequently because of Fibro and you are seeking to figure out why. Or, maybe those incessant Lyrica commercials featuring a woman’s family leaving her on a dock while they have fun in a canoe made you curious to learn more. (I mean, what a bunch of jerks!)
Either way, I hope you have gained a deeper understanding of the nuances and the extensive list of symptoms related to this illness. Although my focus in this post is on what arises during a flare, most of these symptoms are present for us always. They may just be at a lower grade making them a bit more tolerable. We are made of some tough stuff and never knew what strength existed inside us until we had no alternative but to find it. Having a support system to reach for, however difficult for us to do, can be the difference between scarcely surviving, and thriving despite our challenges. So, on behalf of all of us with any disability, Thank you.
My ally (and husband) on Fibromyalgia Awareness Day 2018 in Paris, France.