Fibromyalgia Awareness…Oh Yes, I’m Aware!

Fibromyalgia Awareness Month is here.

Yes, I know it’s to spread awareness to others but as I reflect on fibromyalgia awareness the first thought that comes to mind is, if you’ve got it, IT’S PRETTY HARD NOT TO BE AWARE.

I’ve been trying for the close to twenty years since my fibromyalgia diagnosis to “minimize it”, to try not to focus on it, to not give it that power over my life in that it becomes my life. And I’ve managed to do that for the most part; I’ve still managed, against all odds, to lead a fairly full (albeit extremely challenging) life.

But ooohhh, I’m aware.

Yes, make no mistake, I’m aware.

So let me explain.

I particularly realized this when I first added photos to my blog awhile back. As I added the following explanation to my front page…“P.S. All of the photos throughout my website were taken while I was out still living my life through over twenty years of having fibromyalgia. Each has a memory attached to it for me, special memories, of when I persevered and kept living life to the fullest.”…I had an unexpected and surprising realization.

I realized with every photo I looked back on from the past twenty years, with each memory that flooded back, part of each memory was a fibromyalgia memory.

And what I mean by that is that with each thing I was doing, place I was visiting, event I was at, etc. etc., when I look at the photo, PART OF THE MEMORY IS HOW I WAS EXPERIENCING MY FIBROMYALGIA THAT DAY.

As in, maybe I was dragging myself through that particular day, that family celebration, with that ghastly “walking corpse” feeling I get when my sleep is extra poor (which not coincidently usually happens when I have to do a bunch of extra things to get ready and/or pack to attend something, then often also get up extra early to get to the event on time). Or maybe I had some crazy new alarming symptom that day and as I drove to the event I was supposed to be attending, I was debating whether maybe I should be driving to the ER instead!

Wow, I thought, EVERY photo, as part of the memory, there’s a fibromyalgia memory too. It’s been that intricate a part of my existence.

So yes, I’m so aware.

I’m aware when I look back on EVERYTHING…every occasion I did with my kids, every school trip I chaperoned on, every activity I attended for my kids…every hockey game, soccer game, baseball game, track event, swimming lesson, band performance…every party…every celebration…every wedding…every trip…there’s a fibromyalgia memory too.

I see my nephew’s happy birthday party photos and I’m aware that I still vividly remember sitting with my husband and my three excited kids in our van, stopped for gas on our way to that out-of-town birthday party. I was feeling so scarily “off” that day, I honestly didn’t know whether to be continuing to the party or cancelling and having my husband take me to an ER instead. I sat there, shaken and distressed, wondering how I’m ever going to get through the day. My fibromyalgia memory.

I see the festive photos of another nephew’s wedding and I’m aware of how it almost killed me to get my entire family of five packed and out the door and on time for this early afternoon out-of-town wedding. I remember how I pushed through that entire day and the next, feeling the effects of overdoing it, the additional annoying symptoms that cropped up and the more than usual fatigue, until I could finally get home again to rest a bit and destress. My fibromyalgia memory.

I see the beautiful scenic photos I took while hiking near a picturesque waterfall during a little get away my husband and I took on a special anniversary years ago and I’m aware that I remember feeling more than my typical stiffness and achiness that day, somewhat light-headed too, trying to make the best of it and enjoy the afternoon. My fibromyalgia memory.

I see the exciting tubing and snuggly campfire photos from a family trip up north joining relatives at their cottage and I’m aware of how apprehensive I was on the drive up, wondering if I would be able to keep up the busy pace with everyone else, with everything everyone would want me to be doing all weekend on such an active holiday. My fibromyalgia memory.

I see the fun beach and campsite games photos from an entire summer of camping holidays with my husband and kids and I’m aware of the alarming new fibromyalgia symptom, that I was dealing with throughout those vacations, that doctor’s feared was cancer for months but alas turned out to be “just fibromyalgia”. My fibromyalgia memory.

I see the race photos of my youngest son’s last big competitive track meet of his high school career which I attended and drove his team home from for the entire week and I’m aware of how I was in a horrible and alarming flare all week and kept pushing through so as not to miss any race he was in and be there at the end of each day to drive the team home as I had already committed to. My fibromyalgia memory.

I see the bright cheery Sunday morning swimming lessons photos of my three boys and I’m aware of how I would get up way too early, rush three kids there for early lessons, get them all to where they needed to be and then finally get to just sit by the edge of the pool with my coffee, feeling like a propped up corpse sitting there, with that ghastly feeling I would often get from not having enough restorative sleep all those years, a “walking corpse” is the best way I can describe it, or in this case, a “sitting corpse”. My fibromyalgia memory.

I could go on and on. Every joyful Christmas day photo I see, I’m aware I was virtually running on empty, after the whole month of meeting every demand the season required for a busy family with three kids. Wow, it would land me in a month-long flare, all of January every year, easily, trying to recover. My fibromyalgia memories.

I see amusing photos of a rowdy annual Christmas get-together with long-time friends and I’m aware of how I pushed hard to stand normally the whole night so as not to be noticed and questioned about the horrible stabbing pain that was piercing me mid body the entire evening. My fibromyalgia memories.

And the cheery Easter morning photos, well I’m aware that the bunny (me) “was toast”, lying on the couch with yes, the ghastly “walking corpse” feeling again because the bunny was up late filling baskets and hiding eggs, then up early because kids just don’t sleep in on Easter. My fibromyalgia memories.

Oh, I definitely remember all the good parts of all those occasions and events and well, just everyday life, and I’m forever glad that I did push myself to keep participating in my life and in my kids’ lives. Yes, during these last twenty years I have mostly wonderful, magical memories and I wouldn’t have missed any of it. Not one bit.

But I am aware.

I am so very aware.

I’m aware that alongside every memory for the last twenty years, every big memory, every small memory, there is a fibromyalgia memory for me. A quiet memory that I mostly keep to myself, almost like a dual life I lead I guess.

I have my extra fibromyalgia memory attached to everything. Always there, an intricate part of my life, intertwined with everything I do.

So I’m grateful there’s a Fibromyalgia Awareness Month. It’s fantastic and so very important; bringing awareness to any illness or health condition to as many as we can is a great thing and we all know, fibromyalgia especially needs that!

But for myself I’m having a little private awareness moment too, and I hope you will too. Think of what you’ve lived through, and endured, and especially conquered and overcome. I sure am.

Because what I know is real is that twenty years later, I’m still standing.

And I’m aware of that most of all.