To on The Mighty the article title, "22 Metaphors That Describe what Fibromyalgia Feels Like," caught my attention. As I scrolled through the list I had to smile. Here were people giving all kinds of imagery and metaphor to this intense pain and debilitating fatigue, and yet I found myself chuckling.Read More
I knew the second I felt the first jolt of pain. It was a stress fracture again. The deep pulsing pain from within my bone was all too familiar. I didn't mess around this time. I went right to the doctor, followed their instructions in wearing a little surgical shoe, but it kept getting worse. It's been my nightmare scenario for years. Always lurking in the back of my mind. Always fearful of winding up back where I was years ago. Back in the boot. But that's exactly where I am now. Back in a f*ing boot.Read More
It's been quite a while since my last post. About 2 1/2 months in fact. I haven't disappeared. I've been healing. I've been putting all my energy into trying to nourish myself, be gentle, allow time and space for recovery and growth. All non-essential energy-using things went to the back burner. I had to really focus in on my priorities, and when I thought about writing, it felt like too much energy. And instead of beating myself up about it, I just gently put it to the back burner and told myself it was ok.
My healing and growth has really mirrored the growth outside this spring. Just like my garden, I've found myself slowly but surely returning to life. I've slowly been feeling a bit better day by day, and I feel a sense of returning to myself. Returning to life. The transformation is constant and I'm trying to take it day by day, but for the first time in a long time I feel hopeful that my time to bloom and be back in my fullest version of myself is close on the horizon.
Connection. It's one of the most primal human desires. We feel better when we know we're not alone. There is strength in numbers. I think that's why it can be so natural to flood of relief and connection when we learn of someone else with a medical resume similar to our own. "Oh my god, you too?!" It means we're not alone. It means that as shitty as we feel, or as debilitating as what we're suffering through might be, there is this life line of connection with someone else having a somewhat shared experience. And when that someone turns out to be someone on your family tree? Misery loves that company even more. Why? Again, I think it all comes down to connection.Read More
I'm on day 14 of my 17 day long work trip, and I'm still alive. And actually, feeling surprisingly ok. Every time I walk by something wooden I have the nagging feeling I ought to knock on it, because, how can this be? But this hasn't come out of nowhere. I've been working for this for weeks, trying to build up my reserve to get me through this trip. It takes a lot of work toward health with a chronic illness. A lot of work behind the scenes so that I'm able to sustain the normal day-to-day things.Read More
Not unlike the little sprouts of spring ephemerals beginning to poke above ground at the first promises of spring, I feel a bit of life returning to my body, and to my soul. I feel a little bit more me, a little bit more hopeful. And so I'll waking up every day hopeful it will in some small incremental way be better than yesterday. If this season has a theme, mine will be that of a spring of hope.Read More
When test after test is coming back "normal", it can get pretty frustrating. You know something very NOT normal is going on, but the tests aren't finding what it is. I have found myself at times thinking, "Please just let this test show something!" Let there be some concrete measurable evidence we can name, and treat.
Well today seemed to be that day.Read More
It's the start of another work week. I spent the weekend resting and making self-care my top priority. The agenda was full of massage, reiki, Epsom salt bath, physical therapy exercises, meditation, and some at home yoga. And ya know what? Something must be working. I felt the best I have in weeks. I had significantly more energy, and my pain went from being on full blast to dialed down background noise.
Feeling so good (relative to how things have been) I almost didn't want to say anything out loud. I didn't want to jinx it. The reprieve from pain and fatigue will be temporary, but how long it might last is the real question. I have to travel this week for work, so that will most likely be the end of this streak. I'm hoping that all the self-care I did over the weekend has given me a high enough balance in my energetic bank account that I'll be able to withstand the draw on my resources this travel week will bring.
Trying to come at the week with a positive mindset, at least this morning I'm pretty good, and I feel ready to take on this week. Or at least take on this day. One step at a time. I've got this. You've got this too.
Let'd do this!Read More
Sometimes when it's just one thing on top of another, it can get to be too much. Tonight I've reached my point of, "Hey Universe! Enough is enough already!"
On that note, I've poured a glass of a nice Bordeaux, and am calling it a night. I hope you all are having better health luck right now. But if you're not, know that at least you're not alone, and that it's ok to not be positive all the time. It's ok to sometimes just admit you're at your limit. We all have one. We all reach it.Read More
I've been growing this blog as my little side project for close to 5 months now, and recently decided it was ready for prime time. I put out the word to my family and friends, and the responses couldn't have been better.
What really got me were those that reached out to let me know how much they connected with my blog because they too live with a chronic illness, often invisible to others. Our diagnoses aren't the same, symptoms vary, but the underlying struggles of learning to live with a chronic illness are very similar. I was moved to tears to know that in me sharing my story, the good, the bad, the fugly, I was a light in the darkness to another. This was my greatest hope for this blog project.Read More
My cup runneth over. I have had an amazing Christmas Eve and day, surrounded by family (that I actually genuinely enjoy), lucky enough to have the means to provide many thoughtful and heartfelt gifts to each other, and in a place where my aches, pains, and fatigue feel far overshadowed by love, gratitude, and peace.
But, the road to get here was not smooth sailing. It required a 1,000 mile drive (I'm not even kidding, literally over 1,000 miles). So what makes it all worth it? Family. Supportive family that lifts my spirits, and gives thoughtful gifts to help me feel better. A gift certificate for a massage while here in town. An open invitation to get in with the local chiropractor while I'm here. Warm alpaca wool socks to keep my always cold feet toasty. Gifts that say, "I love you. I understand your struggles. I want to help ease your pain if I can."Read More
December 21. The Winter Solstice. The ancient Yule. The time of greatest darkness in our outer world. In the rhythms of nature, there is a deep drawing inward. Frigid temperatures further make us layer up, retreat, and bundle under sweaters and blankets to stay warm. It struck me lately that this is not unlike chronic pain. Pain can make us shrink back from the world, and ball up in an attempt to protect ourselves. But there is also a great opportunity here.Read More
I was in the kitchen chopping up vegetables and preparing the filet mignon, sipping my Bordeaux, and having a solo dance party listening to the soundtrack of Hamilton (which, everyone does, right?) when one particular line really jumped out to me. Hurcules Mulligan raps out a forceful and resounding, "Hurcules Mulligan, I need no introduction, when you knock me down I get the f*ck back up again!"
It was as if Mulligan, through Lin Manuel Miranda, had struck a cord deep within me. Ok sure, Mulligan was referencing his clandestine work as a spy for the Americans during the Revolutionary War, and I was thinking about how I was having an awesome day kicking ass against fibromyalgia, which isn't a natural parallel. But, the line in the song screams of resilience, fortitude, and a flat our stubbornness against defeat. That's what resonated in me. I've been feeling knocked very low for weeks by my pain and fatigue. But I've always known I wasn't down for the count. I've been biding my time, engaging in self care, resting, all so that I could "get the f*ck back up again."Read More
"Last dance with Mary Jane. One more time to kill the pain."
Ok, admittedly I highly doubt that Tom Petty or his Heartbreakers had medicinal uses of marijuana to fight chronic pain in mind while writing Mary Jane's Last Dance, but all the same, emerging research seems like this might not have been far off.Read More
Pace yourself. Life is a marathon, not a sprint. Don't over-do it.
It's all so easy to say, and yet so incredibly hard to actually do. However, I've found learning to pace myself is a critical survival skill when dealing with fibromyalgia. It's an extension of thinking of my energy and health as a bank account (check out this post from last month on the topic), but a little more along the lines of, "I just got a huge raise, better not go spend it all."
Here are 5 strategies that work for me.Read More
A recent trip home for the holidays has reinforced my own hunch based on completely anecdotal personal experience (i.e., highly unscientific) that there is a genetic component to suffering from chronic pain. Turns out though that recent research coming from our cousins across the pond at Kings College London is supporting my hunch, in a much more scientific fashion.Read More
"Today I'm grateful for_____." This isn't a sentence I reserve completing only when gathered around the table for Thanksgiving dinner. I consider cultivating gratitude a daily practice. Some days I actually jot down in my Gratitude Journal what it is that I'm focusing my gratitude on that day, other days I contemplate it more organically throughout my day. On particularly bad pain days, having a strong and toned gratitude muscle I can flex is enormously helpful.Read More
Managing my fibromyalgia is much like balancing my bank account. Days of rest and self-care are deposits building up the balance of energy and wellness. Events, travel, work, and the like are withdrawals from that reserve. As long as the withdrawals don't cause an overdraft, life is copacetic (relatively speaking). When the reserve is overdrawn, symptoms flare and my body is on the verge of bankruptcy. It's a tenuous balance.Read More
I grew up in rural farm country in Western New York, and my father had been raised on a farm, so farm yard adages were part of my vernacular from the very beginning. Farm life both requires and cultivates a deep connection and rhythm with nature. Before we all had weather apps on our Smart Phones, my family used to always predict an oncoming rain storm with two signs from Mother Nature: the leaves of the trees turned over so expose the underside, and the cows laid down. As a game when driving by a farm I'd often count the number of cows laying down, and we'd turn that into a percentage chance of rain. All highly scientific. However, it turns out there's truth in it. Changes in barometric pressure just before a storm actually do cause the cows pain in their legs, so cows lay down.
During the 3 month flare up I'm currently experiencing, the realization dawned on me that I am just like the cows.Read More