Staying grounded while recovering from Lyme disease
Because I’m not merely “tired” when Lyme gets me in it’s grip, I’m far beyond that. Tired is what happens to well people who overdo. It’s what happens to heroines in Victorian novels who faint on chaises.
Isn’t there a better pronouncement for what happens to people with chronic illness—sometimes even when we do nothing at all?
In my opinion, “chronic fatigue” is so overused it has no meaning. Continue reading
Made by Courtney, age 2.
I lost a relationship to Lyme. As I’ve learned since, Lyme has ruined many relationships and marriages.
The year we met was wonderful. He was smart, funny, sweet, and kind. Best of all, he said “yes” to everything, from new foods to foreign films to travel. He taught me about sailing; I shared my love of cycling. Over a couple of years we grew close.
Then came the beginning of the end of us. When he won tickets to Paris and we arrived full of plans to explore La Ville Lumière, suddenly I was so tired that I didn’t couldn’t keep up. My customary joi de vivre was flagging along with my body. We thought it was jet lag or flu. Continue reading
That’s the little portable pump for my IV drugs. Then there were the pills. More pills. Harsh meds that made me sicker so I could get better. I can’t believe I made it through all that. When it could have been avoided…
It’s 2016, and I’m finally climbing out of the Lyme hell I fell into blindly four-and-a-half years ago. If only I’d known more, sooner.
Maybe I can help someone, somewhere, by offering a few things I was shocked to learn. Frankly, it is damned hard to pick just 10 things. But here goes: Continue reading
Look at this young woman. She looks pretty fine, doesn’t she?
Now listen to her words. Really listen. (Well, it’s kinda hard not to, she’s so compelling). Continue reading
Actually, I’ve learned many people need a little help from me to truly see the pain.
Lyme is known as an “invisible” disease. That’s because oftentimes we look pretty good on the outside despite feeling myriad symptoms inside. And—unfortunately—many of us are darned good at keeping those symptoms invisible.
My own reasons include:
But I’ve come to see that a dose of reality is a good thing. When people understand the seriousness of this illness, they offer empathy and support.
Beyond that, we need others to know how serious chronic Lyme can become, so more people understand diagnosis and prevention—and stay well.
Credit: Lyme Chick
“You look great!”
Many days, I wince when someone says that to me. I want to shout in frustration “I FEEL AWFUL!” And when I try to explain, I want to hear “I believe you”—not “But really, you do look great!”
I’ve felt hurt because even those closest to me don’t see my suffering sometimes. But I’m realizing it’s hard for them to believe how awful lyme can be if I don’t clue them in. Especially when it comes to pain.
Not long ago, my longtime neighborhood book group got together for a potluck dinner. I was just getting to the point in my recovery where I could leave the house occasionally. So I said I’d love to come if I felt okay. Especially because they let me off the hook when it came to cooking a contribution for the table, which I knew I couldn’t manage.
Happily, I made it to the dinner. A few days later someone sent around a photo that included me. By the time I checked my email, a couple of others in the picture had piped up, making jokes about how the picture should have been photo-shopped…the usual chatter of people who hate photos of themselves.
I’m usually one of them. But I opened the file and had to admit I looked, well—great. Yes, great.
The thing is, I felt like hell on the inside.
Credit: David Boyle in DC’s flickr stream
Since learning so much about the horrendous impacts of lyme disease—and living many of them—I am absolutely astonished that I don’t see coverage of this health crisis daily in the news. Lack of information is the reason I got so sick myself.
The few articles I’d seen before I got infected erroneously said lyme is easily treated with a short course of antibiotics, and implied that lyme is no big deal. While this is true for many people, for many others it couldn’t be further from the truth.
I had read that a negative test means you aren’t infected. That’s simply not true; testing is inaccurate. Too bad my health care provider and I didn’t get that information.
Sure, a smattering of articles appear here and there. But not enough. And not enough with a full and accurate picture of this complex illness—and the controversy surrounding it.
Meanwhile, I’m encountering or hearing about lyme patients every single day now, and just about all of them say they never knew it could be so devastating—or so complex to diagnose and treat—until they got it.
Shouldn’t lyme be covered as often as possible in the media so people can protect themselves? Shouldn’t everyone be alerted so they know how to get a proper diagnosis and treatment if they’ve been infected by a tick?
Here’s some good news: From my local support group to LymeDisease.org, there’s buzz about a fantastic series of articles on lyme—a series many hope will make it into the Pulitzer Prize spotlight.
When I was felled by Lyme, my college roommate Tracey said, “I know you don’t see it this way right now, but your Lyme battle is going to change your life in good ways, too.”
My immediate response was, “Yeah, right. Lyme is a nightmare.”
It’s easy to focus on the dark side.
But she’s right. Now that I’m a little better, I see that chronic illness definitely gives you perspective about what’s important.
Sure, I miss out on a lot of life. But what I can do, despite limitations, is somehow sweeter. Exhilarating, even.
I’m no stranger to major loss. As a teenager, I lost my beloved family home and other ties to childhood in the wake of huge financial losses for my parents.
Then came the death of my father after a five-year struggle with lymphoma. Later came the excruciatingly slow passing of my mother-in-law to Alzheimer’s, and my own mother’s declining memory.
Then, the nearly unbearable abyss of divorce. A few years later, I’d only just started to approach feeling whole when a tiny tick transmitted the lyme that knocked me to my knees—and even further down.
The holidays, a touchstone to the past, intensify the grief. I feel it in every cell of my being.
Recently I said to my therapist, who is helping me get through the many stresses of chronic lyme, “A year ago, I thought I had a handle on the losses lyme has sent my way. And I sure thought I had processed all that grief from childhood, and all that terrible pain from the breakup of my family. Why am I so overwhelmed all over again?”
And she said, “Because grief is like a rubber-band ball.” Continue reading
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