What I Couldn’t Wait to Hear…. Until I Heard It

I’m sitting alone in yet another doctor’s office wondering if this will be the one. The one where I finally receive a diagnosis for all that has been happening to my body. I wait in anxious anticipation. Finally, finally, the doctor walks into the room. He has a diagnosis! I have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Wait… I have what? How am I going to go about living with ME/CFS, whatever that is??

Okay, well, at least I have a name for it (and what a name!). A sense of relief quickly washes over me. Almost a weird sense of elation. It is a crazy contradiction of feelings because part of me is elated that all the tests and trial medications are over, but another part of me, the part that heard that this is currently an incurable, painful, chronic condition, is freaking me out!

A name though…. that has to come with answers and medical support options. Right?? But the elation is short-lived and shock starts to set in. I realized all I got was a name, not solutions, answers, and there was no talk of a cure. There is no cure. Instead, with that name my instant thoughts became about the losses and limitations, both big and small, that I was quickly learning about. Some that don’t really matter and others that are beyond heartbreaking. Within moments and for months to come, I became overwhelmed about what living with ME/CFS would look like for me.

I Grieved The Loss Of Me

Days, weeks, months later, as my symptoms continued to grow in nature and intensify, I began to grieve for when I had control over my days and also my future. I grieved for it all because at just 42 I had lost so much of what was important to me. I grieved for my time with friends, working out, and even running errands.

Some days became and still are debilitating days and some are fairly decent. But in the first year or so of my illness, I felt like there was not a single day of being me. And I really missed me – that me was fun and full of energy with an endless sense of adventure. Ironic that my condition’s abbreviation is ME, when that’s the biggest thing that felt lost.

About a year in, I was still very frustrated at how much my life had changed and that I had no say in it. I had worked too hard to get to this point in my life; I wanted, needed, a say.

Living With ME/CFS Was Not Going to Define Me

So, I decided I was going to do what I’ve always been good at doing when problems arose. Study, learn, and fight back. At least to the degree that someone with living with ME/CFS can. So, every day I focused, and continue to do so, on trying to pace my activities at just the right level – doing what I reasonably can and hoping I’ve stopped before my moving target limit has been reached.

It’s a daily, sometimes minute by minute, challenge to keep myself in this game, to overcome the symptoms and flare-ups, accept the losses, and on some days simply be okay with just making it through the day without a single productive moment. That is so hard some days! But as time has gone by, I have started to discover that in a universe of pain there’s also a world of amazing new opportunities. So, I began to open my mind up to them.

ME/CFS – you give me memory loss, I will tell you that I can’t worry about what I can’t remember.

ME/CFS – you give me a lack of coordination. I will tell you I have overcome some of that through becoming a Tai Chi aficionado and gentle yoga fan.

ME/CFS – you slowed my type A personality down, and I discovered meditation is the path to inner peace.

ME/CFS – to be honest, you’ve left me a little bored. But that forced me to discover some pretty fun activities like blogging!

Don’t get me wrong, life’s not all roses.

I have days where I still grieve, where I’ve lost my fight and am too tired to even open my eyes for an entire day, and where I deeply miss that old “me.” Where I feel deflated and mentally bored to tears. And days I fear that one bad accident or major life stressor will take me too far down.

There are a few insights that I’ve picked up along the way though. I’ve learned that one chronic condition often comes with “friends” (i.e. more chronic conditions and serious issues!). That something as simple as chewing food can be an exercise that is just too much some days. I’ve also learned that friendships often fade away (or run away!) when you have a chronic illness. Very sad but true. But... on the flip side….you quickly learn who your real friends are.

I’ve also learned that when you find a doctor, maybe not an ME/CFS specialist, but at least one who cares, listens intently, and constantly is learning more about this prevalent but little known about condition, you hang onto them tightly because that provider is golden! All of these are things you don’t know, until you know… and I hope you never know…

As I wrap up my updating of this article, I have to say that while this disease may be very “in your face,” I am now fiercely dedicated to getting right back in its face with what I can do. I am now a wiser, more enlightened me. I may still have many limitations but I choose instead to focus on the world of new opportunities that I never thought twice about before.

And so many lessons learned later, the most important one I’ve learned is that I am me, not ME!