Here is the post I wrote for last year’s Fibromyalgia Awareness Day. I’m re-posting it as sort of a refresher course for myself, to help me remember these strategies that I too often forget.
(Originally published 5/12/2014)
Today is National Fibromyalgia Awareness Day.
I’m never really sure what to do on this day, because of course I’m aware of fibromyalgia in every single moment in which I am conscious. Plus, I’ve been living with this illness for 6 1/2 years now, so everyone I interact with on a regular basis, whether in person or online, is aware of it as well. It’s also regularly featured on television through the commercial for the drug Lyrica, so it’s been years since I’ve met anyone who doesn’t have at least some idea of what this illness entails.
When I first got sick, all I could see for a very long time was my own suffering. I hurt, and so I wanted everyone else to hurt too. In that place, I wanted people to be aware of how victimized and betrayed I felt, and how unfair it was (to my mind, at least) that they got to continue on with their healthy, happy lives while I had to watch so many parts of my life disappear.
After a couple of years or so I was able to move up the emotional scale just a bit, from powerlessness and despair up to anger. Anger felt much better than hopelessness and grief, and it was from this place that Cranky Fibro Girl was born. Here I wanted the world to be aware of my attitude, edginess, and self-righteous wrath. I was always spoiling for a fight, and always on the lookout for something-or someone-to bash up against so I could unleash the full fury of my wrath.
But eventually my anger ran out. It is very exhausting to be furious all the time, and after about 3 years I finally realized that being mad was not making one single bit of difference in anything related to my illness. I finally got that fibromyalgia isn’t personal-it just is. So I could be angry if I wanted to, but I only had a limited amount of time and energy, and I was starting to wonder if there were other ways I wanted to spend them. At this point my desire for awareness started to shift inward, to the relationship between me and me. I finally had to acknowledge that I would not be able to bend fibromyalgia to my will, so given that, how did I want to live?
After about five years, give or take, my symptoms stabilized a bit. I’d learned enough about how fibro affected me, my body, and my capacity to be able to venture out in the world a little. From here I’ve been focusing my awareness on how to create a happy, thriving, everyday life while also living with chronic pain and illness. So it is from this place that I offer a few of the lessons I’ve learned over these past few years of being ill.
1. Pain is hard. It’s ground me down. It’s aged me. It’s carved itself in my bones, and chiseled itself across my face. It can literally cause me to go out of my mind, because when it gets high enough it cuts me off from my higher brain functions and forces me to hunker down in survival mode. It can steal all my memories of pain-free days, and any hope that eventually it too will pass. Therefore, the most important thing I can do to create a good life for myself is to manage my pain.
2. I am the one who makes meaning out of this illness. I am the one who experiences life in this body. I am the one who thinks with this mind. I am the one who navigates through my days, so I am the only one who can sift through all that information and decide what it means for me. No one is suddenly going to appear with all the answers for me, and it’s my responsibility to decide if that will help me or hinder me in how I live my life.
3. Healing does not necessarily mean being symptom-free. OH, how long it’s taken me to stop fighting that one. On the one hand I hate it, because I am SO OVER this pain. But on the other hand, it means I don’t have to wait for some magical point in the future-that may never come-in order to live, and to even live well. Not that this is an easy thing to do.
Which leads me to my next point, which is that
4. Life is Both/And, not Either/Or. At first I fought this idea as well, because -of course-I wanted healing to mean the complete absence of fibromyalgia. I was desperately attached to a very specific outcome. But it never came, and it’s entirely possible that it never will in my lifetime. So eventually I got tired of the suffering this rigidity was causing me, and luckily, this was suffering I could do something about. When I move away from the demands that All-or-Nothing thinking places on life, the possibilities for having a “good” day are, if not endless, still pretty darn high.
In practice, it might look like this:
“My pain was pretty high when I woke up this morning, AND I ordered a fun new book for my Kindle.”
“I was stuck inside the house again today, AND I have a new episode of ‘Blue Bloods’ to watch on TV.”
“I’ve had to take a lot of pain medicine today, AND I’ve been able to keep the windows open because the weather is gorgeous today.”
5. This is a marathon, not a sprint, and marathons are hard. I’m still working on this one. A LOT. I like beginnings, and I like ends, but middles are really tricky for me. And chronic illness means lots of time spent in the middle of things-pain, fatigue, boredom, etc.
6. Sometimes the best I can do is to help myself feel just a little more comfortable in a given moment, because “better” is just too far away. Sometimes chronic pain is excruciating and unbearable. And you have to bear it. And it is more than can be borne. (And just so that you know, that whole, “You’ll never be given more than you can bear” is kind of a bunch of hooey. Just saying.)When I am here, “feeling better” is in a completely different universe, and one that is just too far away for me to get to at that time. So instead I focus on what could help me feel a little more comfortable: pain medicine, a cold soda, a TV show, a bath, a book. Better is not always accessible, but comfort is.
7. Despite what my mind tries to tell me, this really isn’t my fault. I’m not that powerful.
8. Chronic pain and illness are not intellectual concepts to be grasped; they are experiential realities. Many people ask me what it’s like to have fibromyalgia, and even though I’m a writer and live for words, I know that words can’t really make other people understand what I’m going through. They only way to understand illness is to be ill yourself, and I would never wish that on anyone, except for maybe just a few minutes so they can really get how deeply I suffer and how strong I really am. I can’t explain it, you won’t get it, and that’s OK.
Here’s to another year of living well.
Last week I found out that, for the third time in the past four years, I made the list of Healthline.com’s Best Fibromyalgia Blogs.
This really means a lot to me, because after 10 years of blogging, half of those as Cranky Fibro Girl, I sometimes wonder if I have anything meaningful or helpful left to say about living with this illness. But it seems that there are still things left for me to do here, since every time I start wondering whether or not it’s time to pack it in I get an email like this, or I get a sweet comment from one of you.
I so appreciate every one of you who makes up this community here. Without you I wouldn’t be able to share my stories, or have this opportunity to channel at least a few parts of this experience into something good.
We’re not a chatty community-I see us more as gathering on the verandah of a large manor house (perhaps like one of those large English estates that they turned into convalescent homes during the two World Wars), sitting in rocking chairs or comfy chaise lounges, fanning ourselves and drinking cool, refreshing drinks as we share gentle conversation. And I love that. I feel each one of you here, comments or not, and since I am not very good at responding to all the lovely comments I do receive, I think I shall declare Blanket Comment Amnesty for all of us, so we only do what feels inspired.
So here’s to another year together. May it be gentle and kind. And when it’s not, may we find a soft, soothing place to land when we’re in the middle of the hard.
Blessings to all,
…every time you go to a new specialist they remark on how you’re taking too much medication, but after all the tests come back negative and you ask them what else you could possibly try they shrug, mumble, and hand you a prescription for more medication.
So after after a visit with my new pain doctor that was more like the accidental collision of two random objects hurtling through space than an actual doctor’s appointment, I was sent to get an MRI. This was going to be a problem due to the fact that I am a tiny bit claustrophobic, in the same way that the Pope is a tiny bit interested in religion, and Atlanta is a tiny bit warm during July and August. Plus, I was also a tiny bit pissy because I felt like a circus animal being forced to jump through meaningless hoops in order to earn the “reward” of not having to spend every minute in unspeakable pain.
(Here I must stop and give a shout-out to my MRI technician, James, who doesn’t know me from Adam and will most likely never read this. But he was kind, patient, and very reassuring, and made a stressful experience infinitely better than I thought it could be. Rock on, James.)
Happily I survived, so the next day I went to my second appointment at the pain clinic, convinced that this was all an enormous waste of time and energy-right up until the doctor announced that they’d found something on the MRI. Somethings, actually.
Unfortunately, this news came at the end of a three-week period during which, in addition to all the medical stuff going on, one of my cats (my BABY!) was diagnosed with arthritis, my car (my OTHER baby) died, my husband was in a car accident (he was fine, but it took three weeks for his car to be repaired), he had a skin biopsy come back as cancerous (he’s fine now, thankfully), my chiropractor moved away, and they flew those two Ebola-laden American healthcare workers here to Atlanta, which was a tiny bit anxiety provoking.
So now adding to the whirligig that was my life was learning that I have a herniated disc in both my neck and my lower back. Finding that out was upsetting enough, but as the doctor started talking about what the treatment would involve I got more and more freaked out, and I realized that it had been a mistake to come to this visit alone. Since then I’ve finally admitted that I can’t be both the patient and the patient advocate, and even though I feel guilty every time he has to take time off of work to do it, my husband now accompanies me to all my appointments.
The doctor said that the situation in my back was serious and needed to be addressed right away, so he wanted me to come back in two days to start treatment. I was still reeling from the fact that they’d actually found something wrong with me so most of what he said was a blur, but I picked up enough to know that it was going to involve needles and my spine.
But the blows hadn’t finished falling yet, because as I dazedly asked him how this procedure was going to help my fibromyalgia pain he said, “Well, I don’t believe in fibromyalgia.”
And then my head exploded, because HOW IN THE WORLD WAS I SUPPOSED TO PROCESS THAT?! Why had my FIBROMYALGIA doctor, in order to treat my FIBROMYALGIA pain, send me to a doctor that DOES NOT BELIEVE IN FIBROMYALGIA?
So I said, “Um, what does my fibro doctor think about that?”, and he just kind of shrugged it off. He said, “I’ve seen a lot of people who come in here thinking they have fibromyalgia, but the problem is that they’re depressed, so they feel shitty, they’re obese, and they have a poor diet.”
In a superhuman show of self-control I reigned in all of my natural (and frankly, completely justified) instincts to violence and replied, “Well, I guess we’ll just have to agree to disagree.”
He replied, “Well, if it were me, I would want someone who didn’t believe in fibromyalgia because they would dig deeper to try and find other causes for the pain.”
This was a really annoying response, because unfortunately, he had a good point. So I could no longer enjoy an uncomplicated anger towards either him or my rheumatologist.
I was mad at my fibro doctor for refusing to prescribe pain meds for me anymore, and for sending me for treatment to a doctor who doesn’t believe in my illness. But, his doing so meant that they discovered a previously undiagnosed problem.
And I was mad at the pain doctor for kind of being a jerk, but he had treatments that might possibly take away some of my pain.
So, as the whirligig transformed into a tornado, I went to check out and try to figure out what to do next.
(To be continued.)
When last we left off I was in the examination room of the pain doctor I was about to meet for the first time, frantically trying to come up with answers to whatever questions he could possibly ask, trying to anticipate everything he might say, trying to mentally strategize every potential situation, so that there would be no possible way for him to deny me my pain medication.
Being locked into such a mentally constricted and obsessive place is awful in and of itself, but it was magnified by the fact that the doctor was two hours late for my appointment. So between my anxiety over what was (or what wasn’t) going to happen, and my guilt at keeping my husband away from a work situation that needed his attention, not to mention spending two hours in a cramped, windowless room, I was about to lose my mind by the time the doctor got there.
And then…it was totally anticlimactic.
I met the doctor, he asked me some questions, glanced at my file, gave me a 2-second physical examination, said, “I don’t have any problem writing this prescription for you. But I can’t give it to you for fibromyalgia because it’s not indicated for that. So I’m sending you to get an MRI of your spine, because by this age (Important Side Note: Thanks so much. Like this illness doesn’t already make me feel like I’m 150 years old) there’s usually some degeneration,” set a follow-up appointment, and then went on to the next patient.
He left me in a very unsettled place. On the one hand, it sounded like I was going to be able to get the meds I needed. But on the other hand, I interpreted what he’d said as, “You have to go through this completely unnecessary medical procedure before I will give them to you.”
So I scheduled the MRI, because, what else could I do? He had the meds. I needed the meds. So I had to do whatever he said.
(To be continued)
The shoe that fits one person pinches another;
there is no recipe for living that suits all cases.
Yesterday the new issue of Popular Mechanics showed up in our mailbox, and our curiosity was immediately piqued by the cover story. So we flipped over to the article, and Mr. Cranky Fibro Girl read out each item while I tallied up our scores.
Things started off well.
OK, so far I am crushing this list.
I felt pretty good about the rest of the “Ages 1-11″ skills (ride a bike, hammer a nail, load a dishwasher), although I lost some points on “pitch a tent” and “paddle a canoe” since I’m only riding the coattails of my Eagle Scout husband on those.
Our scores started to diverge once we reached the “Ages 12-17″ range of skills, although I can perform the task with the largest font size, which clearly ought to count for some bonus points:
Then we reached the skills one is supposed to acquire in one’s 20s, and here we are really stepping outside my wheelhouse:
Sure. Because my mad Spanish verb conjugating skillz would really come in handy here.
My husband was still doing fairly well overall, so feeling pretty confident, we cruised on over to the 30s. And that is where we saw this:
Um, really? Since when is this a must-have skill for the masses? Was I absent the day they taught that in school? And the most important question of all: exactly which audience are they trying to target here?
Because, let’s review. This is Popular Mechanics we’re talking about.
It is not How To Survive Once You Go Off Grid.
It is not Skills You Need To Master In Anticipation Of The Imminent Zombie Apocalypse.
It has nothing to do with hunting or the outdoors.
It is a magazine designed for readers who will salivate over the tear-out, pin-up, glossy centerfold featuring an extensive array of hammers. Along with articles on retro guitar amps, choosing the best hedge trimmers, the new Apple watch, and NASA’s latest sweater for astronauts.
Who is this mythical person they are trying to reach? And is anyone else afraid?
“Self-centered women are not easily blown over by the gusts of other people’s opinions, agendas, or problems coming their way. Their strong center keeps them steady.
Self-centered women know themselves. Intimately. The smooth and the rough. Their ego and their Self.
Self-centered women don’t put others before themselves to the point that they have nothing left. In turn, they have more to give to everyone.
Self-centered women know life isn’t tit for tat. They can receive without “earning” it and they can give without expectation of reciprocation.
Self-centered women are powered sustainably from a renewable source, rather than from the validation, approval, and attention of outside and temporary sources.
Self-centered women are their own compass. Their own north-stars. They navigate these choppy waters as an eye in the storm. This is why we so often take refuge in their work, words, and presence.
They are lighthouses for the rest of us because they are lighthouses for themselves.”
May we all learn how to be a little more self-centered.