Tag Archives: isolation

Video: Shockingly Candid Story of Lyme Disease

When I discovered this on YouTube years ago, I sobbed as a happy young boy’s health disintegrated before my eyes because of Lyme and co-infections—and no appropriate treatment.  I weep when I watch it today.

And I wonder if he ever recovered, because he’s extremely ill at the end of this video. The website for donations is gone. Did he make it?

So many thousands could tell similar stories of horrible illness, treatment hard-won, and improvements followed by crashing in an endless cycle.

Jean-Luc, I think of you often. You are my hero. Your courage has sustained me many a day.

I haven’t found the rest of your story online, but I hope the treatment you finally got has brought you to remission, and that you are out there fishing every day.

Checking Facebook, Craving Face Time

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Two things in particular sustain me: natural beauty and friends.
Photo: LifeLoveLyme

For a long time now, I’ve been in a place where viewing the lives of friends through the window of Facebook is incredibly painful. What’s wrong with me? Why can’t I just enjoy the happy happenings of others instead of being overcome by my own piercing grief, frustration, and regret?

I checked my page today and saw a lot of posts from folks, many of whom I have not seen since I got sick. They’re experiencing all kinds of major life events. Meanwhile I’m facing major limitations.

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What Lyme Teaches

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Photo: LifeLoveLyme

Recently, I logged on and saw a posting on my Yahoo lyme support group from Rebecca of Hampton, Virginia. She had written a list that touched us all, and I’d like to share her thoughts with you.

I am learning…

To chill out.

To love myself not just on good days, but bad days, too.

To reach out to others.

To let go of my need to control.

That friends are treasures.

That hugs, kisses, and a little together time in a family go a long way.

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That it’s OK to not be OK sometimes.

That I’m never alone.

That every moment of every day is a gift.

That none of us deserve this and we matter in a very special way.

That this disease is ugly—but I’m not.

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An Encounter a Day

Mo says, “Time to go out and greet the neighbors!”

I woke up this morning gripped firmly in the vise of depression. The minute I opened my eyes, I felt the weight of negative thinking pressing hard on me: “I will never again have my life back as I knew it.”

Sure, since my total relapse a couple of months ago thanks to a new tick bite, I’ve improved drastically. But still, on a good day I can manage only one or two activities—and manage is the key word. The rest of the day is an interminable stretch I try to fill with reading, movies, and rest enough to keep the pain at a tolerable level.

I miss walking, running, biking, hiking, traveling, shopping, visiting my kids, cooking wonderful meals, visiting friends, volunteering in my community. Not to mention working. I’m not always able to be positive about my slow but steady improvement.

Fear that I’ll hit a plateau weighs me down. But I’ve learned I can help myself by sticking to this anti-depression strategy: enjoy one social encounter a day.

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Lyme: Lessons Learned

Taking care of yourself isn’t, well, rocket science…
[Dr. Robert Goddard. Credit: NASA on Flickr/The Commons]

I’ve had the misfortune of getting re-infected just as I was pulling out of two-plus years during which I was largely sidelined by lyme and other tick-borne infections. There’s a bit of good news, however. I learned a few things the first time around, and I’m doing things differently.

Here are some lessons I’ve learned. Maybe you can benefit by taking them to heart now, instead of learning the hard way like I did over time and missing out on benefits you could have enjoyed much, much sooner. Continue reading