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.
I couldn’t participate in National Fibromyalgia Awareness Day because, well, fibro. Reading your post this morning, though, reminded me of the things I know but that I forget because, well, fibro. Again. Thank you for the reminders (and the bold font – my brain refuses to process complete paragraphs right now)!
I really needed to read this today. I have been in constant, debilitating, life altering, excruciating pain for at least 6 months now. SIX MONTHS! No one should have to go through this type of suffering. No one. So reading your post helps because I know that I am not the only one feeling this way (sorry to everyone else who’s in this boat) and that there are people who completely understand this and really get where I am at right now. I am still in the angry phase. Maybe today, after reading this post, I can think about moving on to the “how can I improve the quality of my life” stage. Number 6 hit me the most. There really isn’t “better” for me right now. There is however “not as horribly bad as it was before”, which is still terrible but slightly not as terrible. The word better always bothers me because if I say I feel better then it is almost always assumed that I mean that I’m just fine and dandy today when better only means that I don’t want to have my arms amputated today. lol Thank you for posting this and for understanding. It does help.
I feel so many of these same things. After years I finally figured out this is the way it is and for what ever reasons this is part of my journey. I also have learned many days to be happy with taking the edge off of my pain. I can remember desperately thinking I would not be happy till it went away. It is not, this is part of my journey.