One and a half years in, and I’m at the stage of treatment Lymies like to call pulsing: off the meds for one week, then back on them for three more, repeating this for a few months until I can increase the time to two weeks off, two weeks on, and so forth until I’m medication and symptom-free for ~six months.
Then, that blessed little word full of such hope and promise:
Remission.
The happy part is that I’m 1.5 months into this healing (1 year, eight months, to be exact. Woot, woot.), I’m feeling better all the time and worlds apart from where I was in early 2012, and I continue to have the support of incredible friends and family who encourage me to keep going.
That’s the hard part about Lyme Disease –it’s the hard part about any chronic illness — the knowledge that I have to keep going, the acknowledgement that I’m not there yet.
The year before seemed like a nightmare I was leaving behind as I began to feel more alive and motivated and healthy than maybe I’ve ever been. In this euphoria, I managed to convince myself that I was better. And it was in this pretending — because I so wanted to believe it, I so wanted to believe that I could be ‘normal’ — that I fucked up.
Taking my medicine became more like a chore than a life-saving necessity, and I shrugged it off when I forgot a dose or two or four. Or, you know, more. I was more driven than ever with the publication of my book (Ahem.) and establishing my business, and I eagerly took on extra responsibilities at my day-job. I stayed late a few days a week to complete projects, and when I woke up the next morning, I was actually excited to do it all over again. Happily, I still am.
One of the most difficult things to accept when you have Lyme Disease is how much you can lose, and I realize every single day how much I would have lost if it weren’t for the support from my bosses. I like to think that they knew who I was before I got sick, and that they believed in me enough to keep me on, even creating a more flexible role in which I could work while I was at my worst. Maybe that’s why I feel such renewed dedication, in part because I feel such gratitude towards them and in part because I want to show them — show the world — what I can really do.
And if there is one thing that surviving Lyme has taught me, it is, without conceit, that I can do anything.
There I go again, pretending that I’m all better when there’s still some battles left in this microbial war. That’s me again, rushing into the future wide-eyed and bushy-tailed, ready to greet what it has to offer with outstretched arms and unabashed idealism. The opportunity that awaits, the beauty that surrounds, the inspiration to draw forth, and all the love to give — that’s the price of getting better; life, the best prize for winning, for surviving, for holding on.
But all of that doesn’t lie in the future. It’s here, now. I’m feeling it in each moment of every day, which is why it’s so hard to admit that I’m still in the process of getting better — because in my mind, I already am.
And days like today — when the germs believe, like I had, that they’re safe and come out of hiding, when I take my next dose and the bacteria release their toxins, when I awaken to a pain in my legs that I haven’t felt in months, when I stop ignoring the neuropathy that’s begun to migrate once again to my extremities, and when I feel the fog of fatigue weigh me down — I realize it’s still a journey. It would be a long one, I knew, but there was a small part of me that wanted to believe I’d be one of the lucky ones, that my recovery would be quick and easy.
Nothing is ever quick and easy. Nothing that’s worthwhile, anyway. Certainly not when it comes to your health and future.
I know that I’m still in the middle of it all, and though, stubborn as I am, I’m not as far along as I would like to be — working full-time, making plans without worrying I’ll have to cancel, having enough energy for a full week without spending the weekend in bed — I’m so much better than I could have imagined a year ago. I know that I have to continue to accept and be aware of my limits. I know that my first priority must be to my health. I know that I have to persist in treatment, however monotonous as it becomes.
I know that I have to keep going.
I know that I can keep going.
Maybe that makes me one of the lucky ones after all.
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