I've kept this blog active, always with the intent to get back to it. But it has been almost 5 years. Why is that? When I look at the date, it becomes clear.
In October 2011, the date of my last post, I had recently been promoted to non-equity shareholder in a job that I (mostly) enjoyed, having achieved reasonable amounts of success in a field that was not always kind to women. I was at a firm where I figured I would spend my career in private practice, working with people who had become like family in a lot of ways, for better or worse. I was learning krav maga, which I loved. The Man Meat and I were firmly entrenched in the home of our dreams, in a neighborhood we never thought we'd live in, back when we started our life together. I had three wonderful dogs and an asshole cat, and apart from the stresses of everyday life, things were great. We had just traveled to Scotland for a roadtrip through the Highlands earlier that year. We had fun with friends, often entertained, and I found reason to laugh every single day.
I had always been tired and worn out - that's not a secret to anyone who has known me. I knew I had issues with stress management and sleep (who doesn't?). But nearly 20 years of daily headaches were wearing me down. And the fatigue was getting worse. The body pain was more than what I should be feeling from getting my ass kicked at krav maga twice a week (by large men, half my age). I couldn't stand loud noises or chemical smells, and it was evident that my senses were on high alert. It was all becoming a crushing burden. And while I suspected what was going on, I didn't want to face it, because I had spent at least part of my career making light of people with this condition. Shame on me, for that.
My primary care doctor confirmed it. She put me on medication that made me vomit if I missed a dose by as little as an hour. Then a specialist at OHSU confirmed it. Then a doctor who only treats fibro (and who has fibro, herself) confirmed it. I suppose there was no getting around it. The good news is that it wasn't cancer, or MS, or even arthritis. It wasn't fatal, and it wasn't necessarily degenerative, and with a sound approach, it would not be debilitating. The bad news is that it wasn't known what caused it, and there wasn't a magical treatment plan. It would be a lot of trial and error.
I gradually became comfortable telling people, knowing that many of my professional peers would sneer at the diagnosis. Some people were understanding, even if they didn't really understand what it meant. Some people actually laughed at me... to my face. Others just told me that it meant that no one knew what was wrong with me.
So, along with the diagnosis came a little bit of shame. Shame that people weren't taking my issue seriously. Shame that I was having a hard time keeping up with all of the expectations put on me, and which I had accepted. I had to dedicate all of my energy to work first, and life second. Shame that the pain and the swelling and the overall bucket of shit that comes with this condition were so evident to all around me, because it was getting increasingly harder to pretend. If you think it's hard enough being a woman who is expected to SMILE! and BE HAPPY! all the time, imagine trying to do that when you are in some level of pain, most days.
Recently, some friends have been diagnosed, or suspect the diagnosis, so I decided it was time to talk. On their behalf and on mine. I don't know why it affects women at a significantly higher rate than men (perhaps only women seek treatment?). I don't know what causes it - some say it's childhood trauma, some say it's a sleep disorder, some say it's a result of physical trauma or injury, some say it's a holdover from mono, some say it's a result of toxicity caused by gut imbalance. I suspect that all of those things can factor into it, but what I know is this - it's real, and I don't want my friends to suffer the same shame I have.
So, to help them, and to help others understand, here's what it feels like:
There is widespread pain - some days are okay, and some days are worse. Doing something as simple as climbing stairs can cause your muscles to burn unreasonably. Sometimes, it's hard to walk in the morning. Often, when I wake up, it feels like there is a layer of fire between my skin and my muscle. I get electric pulses shooting down my arms and legs. There are points on my body that feel excruciating pain when you apply even the mildest pressure. Chemical smells give me horrible headaches, and if it's too much, will cause my glands to swell and my throat to constrict. Loud and repetitive noises make me batshit crazy. My neck and traps are basically concrete blocks. I can't do much with those muscles, which means no krav maga, no gym, no kayaking - nothing that repeatedly brings my arms at level with my shoulders, or higher. This means no extended photography, which I have always loved. I am constantly swollen - sometimes my hands are so swollen it's difficult to close them. Sleeping is tough. I can sleep eight hours and feel like I have only slept three. An old sleep study revealed "alpha wave disruption disorder" with a "remarkable number of intrusions," which basically means my brain is as active asleep as it is awake. Exercise is nearly impossible, apart from walking - my muscles sometimes feel like a hundred rubber bands, stretched to their limit. My trainers have said they have helped people with fibro, but they have lied and have caused more harm than good. Most foods make me sick and I'm fairly confident that I'm not digesting nutrients appropriately.
But there has been relief. Regular myofascial therapy has worked wonders. No more constant headaches! And an epilepsy medication helps me achieve deep sleep, which allows more regeneration. I can go weeks and months at a time, feeling decent. But if I overdo it, get a cold, or even get stuck in a room with someone bathed in perfume, a flare is inevitably around the corner.
So, what does life look like, five years after I last wrote in this blog? We've downsized our home to something far more manageable. We are cautious how we spend time, and I am particular about where I spend my energy. We used to entertain all the time, but big parties are mostly a thing of the past. Our social life has gotten smaller - yet more meaningful. I don't tolerate poor treatment from anyone. My ambition has given way to identifying what I really value in my career. I left the firm I had called home for nearly nine years. I have adjusted my professional life to have more control over it, and am lucky to have a group of clients I adore, and who make work worthwhile. I recognize my limits, and if I don't, my wonderfully supportive husband is there to remind me to knock it off. (For those of you paying attention, that means no fourth dog, and no house-flipping.) I don't know what I did to deserve to share my life with such a remarkable human being (despite the rules against fourth dogs and house-flipping).
It's not a bad life, by any stretch. But it is a life that is different from what I expected. So, if we share the same friends, or even if you know someone who has - or who suspects they have - fibromyalgia, be kind. The only thing worse than feeling like shit much of the time, is feeling like shit and having no concrete answer as to why, or how to treat it. Don't laugh at them. Don't throw them shade, or side-eye. Be supportive, as you would with any friend or loved one. It's that simple.