Tag Archives: Lyme disease

Cinque Terre, Land of Joy

I want to tell you about my recent trip to the Coast of Northern Italy – and one spectacular colorful city on the water! And, I REALLY want to tell you about the handsome man who swept me off my feet.  Dashing features, smiling eyes, brilliant and charming… well, you know the type.

And I definitely want to tell you about the latest adventure in my business and how excited I am about the new direction I’m moving in. About the unexpected connection I made last month that is creating a wholly new enterprise I never could have imagined.

Alas, I can’t. All I can honestly tell you about is my last doctor visit and the results of my latest blood work. Truth is far less interesting than fiction. One thing I’ve learned about chronic illness is that it’s boring as hell.

Unless you’re a medical researcher (or someone else going through it), the details of my latest intensive research (dopamine and serotonin this week) aren’t going to fascinate you. And to be sure, the news of 5 days in a row without an afternoon nap is underwhelming.

Then there’s the term “better”.  For most healthy people, better is like a light switch – it’s on or off.  You’re sick or you’re better. What I’ve learned (to my dismay) is that better is infinitesimally incremental.  I’m significantly better than I was a year ago. I was better in August than I’d been for a long time. I’m better now than I was in December. But I’m not better, as in, sick or better.

So what exciting things can I tell you about?  Well, there’s my sleep, my diet, my digestion, my supplements, my brain fog… Woohoo!  (Insert sarcastic smile.)

Basically life is all about the capacity du jour. This is where my focus goes, because it has to. This is what I’ve been thinking about and dealing with day in and day out for a long time. And it’s really intense. Ongoingly.

There’s also the financial state. Because who can work when they consistently can’t find even simple words, can’t plan tomorrow’s energy level, and don’t remember what they just finished reading?

And the emotional state – living like this is hard. Mentally, physically and emotionally exhausting. Some days are better than others.  Some days, I just need to be able to share at least this part so I can continue the marathon.

These are the things I’ve wanted to say for some time now but didn’t have the ability. Luckily for me, my family has been a rock, despite my boring them all to tears for years. My family and friends have stood by my side, supported me in every way. I consider myself one of the *very* lucky ones to be making it through to the other side, and I’m grateful.

As things continue to shift and I have more capacity to write, to exercise, to go 5 days without a nap, and to work, it felt important to share this for all the years that I couldn’t. For all the years I didn’t know what was wrong, and I didn’t have the energy or ability – and for all those people who still don’t. Especially when you’re undiagnosed (or misdiagnosed) and your doctors can’t figure out what’s wrong, or you’re diagnosed with something that has a stigma attached to it.

In many ways it’s a loooong and horrible nightmare when you’re living it from the inside, and just simply boring as hell on the outside.

(Image Cinque Terre at Sunset gratefully reproduced via fabzscardigli.wordpress.com)