May 12th is Fibromyalgia Awareness Day

not lazy fibro

I found out this morning that today is International Awareness Day for fibromyalgia and other pain conditions. I don’t write enough about having fibro, and today I’m going to change that. There’s a simple reason why I haven’t written about it: I’ve been hoping it would go away, and I wouldn’t have to.

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Beth and me, in 2007.

My pain started in 2007, after some intensely stressful life events. I’ve read that around 50% of fibro patients first began experiencing pain after a stressful event – car accidents are common triggers, though that wasn’t mine. I was right in the middle of trying to revamp my life by working out every day and eating better, so I took the pain as a sign my body was just adjusting to becoming the bad-ass hiker/bicyclist I was on the road to becoming. I remember taking pictures of my rippling, muscley, beautiful calves. Oh, to be that strong again.

But over time my relationship to exercise began to shift. Before the fibro, a morning workout might make me tired during that day, as you’d expect. But in the following days I felt stronger, refreshed, and more fit. I slept better on the days that I worked out. After fibro, nearly all exercise would cause several days of severe fatigue, and my sleep became fragmented and unsatisfying. I woke up tired, feeling like a train hit me. I remember this as a big transition point: I’d never woken up in pain like that, on a daily basis. Now I can’t remember what it’s like to wake up without intense pain shooting through my body.

We take a lot naps, Finnegan and me.

We take a lot naps, Finnegan and me.

From there, everything just got worse over time. By 2010, I was actively seeing doctors in an attempt to find out the source of the fatigue and pain. I saw regular doctors who told me I was just out of shape and needed to work out more, with no explanation for why my experience with exercise was now so different than before. I saw naturopaths who said I must have a food allergy or intolerance. I had four $350 allergy panels over the course of four years, all yielding different “intolerances”, none ever matching the one before it. None ever provided relief when followed. One doctor said I had SIBO, and put me on a medication that caused me to be near-fainting most of the day, until another doctor found out and said, “Hey, this medication makes people faint, we need to take you off that.” Eventually the focus on my bowels and food intake led to a day in the hospital for an endoscopy and a colonoscopy. Super fun. Neither test turned up anything.

In 2012 I was finally correctly diagnosed, by my new and excellent GP, who also sent me to an arthritis specialist at another hospital to confirm the diagnosis. By this point I was being tested for cancer, multiple sclerosis, and other scary things, so the diagnosis of fibromyalgia seemed like a huge relief. For about ten minutes. And then I got the speech: Yes, I had something that wouldn’t kill me. But I also had something that would make me feel like an 80-year-old, for the rest of my life. There is no cure for fibro. There are a few medications that can help, but none that make it go away, and all of these come with lots of side effects. In short, my life would never be the same.

One foot in front of the other. Every day.

I’d had anxiety disorder and panic disorder for over a decade. Experiencing chronic, intense anxiety had taught me to fear my own strong emotions – which often triggered more anxiety – and to fear my own body, which seemed to create these storms out of nowhere. To be able to look at the reality of fibro asked too much. I kept myself in denial a long time. I would pay lip service to “coping” and “pacing myself”, but what I was really doing was pushing the present away and focusing on a future where I was healthy, full of energy, without any fibromyalgia, and hell, while I’m dreaming, I also weigh sixty pounds less and I can bench press my body weight.

It’s been four years since I was diagnosed. Through the last year of therapy with a great counselor, I’ve been able to slowly, at my own pace, rewind from that forward place, that fantasy future where I’m healed and strong, and arrive in the gentle, if rocky present moment. My body is not a place where I’m happy. It hurts, it feels too heavy. I’m not without gratefulness for all it’s done, but it’s not easy to put the brakes on such an entrenched pattern of avoidance. What strikes me about arriving at this place, is how no one thinks I’m any different than before. I look the same. No one knows that I’ve spent so many years pretending I’m not right where I am. You’ve all been here. I’ve been far away.

pain scale

Daily life for me is a 6-7. If I’m swimming, I can get down to a blissful 1-2. On a day with extra stress, it goes up to a 11-12. My worst days are the 14+, but thankfully those are rare. For people without the advantages I’m able to access, like easy access to rest and lots of good medical care and supportive relationships, those moments are quite common, and contribute to making their condition completely debilitating.

There are good reasons to come to the present. I don’t want to live in the future anymore. Avoiding the present means, ironically, avoiding making the very changes that could impact my future in a positive way. Fibro can’t be cured, but there are lifestyle changes I haven’t yet completed that might really help things. And I don’t want to make any more big decisions based on an idealized scene that is unlikely ever to manifest. I’ve been on the path to finish school, but have been having second thoughts after realizing that all I’m doing is finishing a project I started long ago. I don’t have a constructive purpose in mind for my degree, and until I do, I don’t see the point in spending many thousands of dollars pursuing it, especially when those funds could be useful in other areas of our family’s life. Greg is enthusiastically pro my finishing school as long as it’s making me happy, but I have to admit that as much as I love going to class, it’s not the magic bullet of finding my life’s purpose that I’d hoped. And I’ve been slowly adjusting to the awareness that I will likely never have a regular job or career. I tried working part time last year, at a wonderful company. I was there eight months before I had to quit, from fatigue. It wasn’t stress from the job, it was simply not having enough spoons to make it through the day.

So, what will I do with myself? I’m 41 years old, I’m iffy on the advantages of finishing my expensive degree, and I’m not sure if I’ll ever be able to work. What will my life look like over the next decade? I’m not sure yet, but the willingness to stop hiding from the present is a start.

I neither need nor want anyone’s pity. I’d certainly love your understanding, and I’d love for you to take that understanding and send it on to others you meet who have an invisible illness. I appreciate – no, I treasure – the love and support of my friends and family. They are kind to me when I cancel plans, they’re gentle with me when I’m worn out and feel emotional. They don’t take it personally when I can’t come to an event, or when I forget something important. When a ball I’ve been juggling is about to fall, someone – most often my sweet husband or my wonderful mom – will step in and catch it for me. In short; I am very well cared for, and I am very well loved. I’m seen, and I’m heard. I also have the monumental privilege to inhabit a life where I can help take care of my family without needing to hold down a paying job. In addition, and this is no minor addition: I have access to excellent medical care, and insurance.

What I want you to care about, what I want you to be aware of on this day of awareness, is that over 5 million people in this country alone, have fibromyalgia. It’s often called an invisible illness, because you can’t tell someone has it by looking at them. The problem with invisible illnesses is that they often fail to have the validation they need for their victims to get the support they require. Imagine living with this disease and needing to work full time to feed your family, and not having access to excellent medical care. That scenario is my personal nightmare. Through in-person and online support groups, I know several dozen kind and brave people are who coping with that reality every day, and it viciously eats away at their emotional and physical health, their relationships, and their long-term economic security. Chronic pain is a soul-sucking, devastating condition that makes you doubt your self-worth in a culture that equates human worth with achievement and economic success. If you aren’t valuable to the economy, then you aren’t of value. There are many paradigms we need to change. This is an important one.

If you know someone with an invisible illness, and you want to help, ask them what support they need most. Even if it isn’t something you’re able to provide right now, just asking will show that you care, and that you’re validating their experience. That alone is worth a great deal. In your social circles, when someone mocks the validity of someone’s experience, step in and point out that these illnesses are as real as diabetes or cancer. These conditions might look prettier, but their teeth are still sharp.

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5 responses to “May 12th is Fibromyalgia Awareness Day

  1. Pingback: After saying, “I can’t march for miles,” I sign up for a 5K. Because: denial. | Sewbi-Wan Kenobi

  2. Pingback: My world has changed. | Sewbi-Wan Kenobi

  3. Hi Hollie,

    What a ride it is, the health freakout thing. It’s been good to see your blog, which turned up in my computer thanks to your reference to the yuloh posts in sailing auklet. It was really nice to hear that you liked them! And we have some similar tastes in boats – I was a whisker away from buying a Flicka, a number of years ago, and still look at them longingly. It’s fun seeing what you’re doing with yours. I loved the video with the tour of the forward lockers and the water tank and water lines.

    It had been on my mind to put a comment somewhere on boat bits, and then today I read this post. So here I am. You know there are some differences of opinion, and different experiences, about possibilities for dealing with fibro, and chronic fatigue? Absolutely none of my business, where you choose to go with that, but I just wanted to put a note, in case some of the newer work with addressing limbic system issues isn’t familiar. Maybe you saw this, on the auklet blog? There are a couple of posts about “brain retraining.” Fascinating stuff, if you’re inclined. I expect you’ll see my e-mail address, as a result of this comment – do feel free to be in touch directly, if you feel like it. Any way around, wishing you all the very best!

    Shemaya

    Like

    • Oh no, I haven’t read that on the blog yet! And thank you for excellent intro to that offer, I so appreciate it. As I’m sure you’re aware from your sensitive introduction, there are some shockingly insensitive suggestions made to people with these odder and less-understood illnesses. I once had someone tell me that if I stopped drinking Diet Coke, I’d never have this problem again. I replied I didn’t drink Diet Coke, and never had, and have always avoided Aspartame. The guy called me a liar, and said I obviously drank a lot of diet soda, and wanted to be sick.

      I know from talking to other folks with fibro and chronic fatigue, that my experience is far from isolated. So again, hugely appreciate your thoughtful preface to your offer. And no I haven’t read about that on the Auklet blog! I haven’t actually read most of the rest of your excellent blog, just the stuff on the yuloh so far! I love that you also think highly of Flickas. They’re such fun little boats! I added your blog to my Feedly so now I’ll see the posts. I’ll go back and find and read the posts about brain retraining, because no I haven’t heard of that but it sounds interesting and I’d like to know more. I’ll send you an email tonight or tomorrow!

      Thank you so much for commenting!

      Like

      • Hi Hollie,

        I’m so glad that bringing that up felt okay. What an experience, with the fellow with Diet Coke on his mind. I think that people often see their own fears, when they interact with folks with health issues, and then the only way that some of them know to make themselves feel better is to invalidate the other person’s experience/reality. It’s extraordinary how often that stuff comes up, and in what forms. Sheesh.

        In the meantime, hooray for boats! It was great to get your e-mail, and you’ll have mine back by now, but here’s this, just to follow up.

        Very best wishes!
        Shemaya

        Like

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