Category Archives: Tips for Family and Friends

What Does Chronic Fatigue Mean, Really?

 

 

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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

Portrait of a Love Triangle

Made by Courtney, age 2.

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

10 Things I Wish I’d Known About Lyme Disease

IV treatment. Pills. More pills. I can't believe I made it through all that. When it could have been avoided...

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

Video: “Facts to Save Your Life” by Gabbi Hicks

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

Burning Feet

I’m pretty sure most people around the world who aren’t living with Lyme think the symptom list is this simple and straightforward:

  • bull’s-eye rash
  • flu-like symptoms

And I reckon that this false belief is a major reason persistent Lyme disease continues to be missed in people with a wide range of complaints physical, cognitive, and emotional.

Continue reading

5 Ways to Help Others “See” Lyme

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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:

  • I don’t want those around me to worry.
  • Pride.
  • I don’t want people to know how sick I really am because I’m afraid they’ll abandon me.
  • I hate the thought of becoming that depressing person who is constantly complaining about how crummy he or she feels.

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.

Continue reading

Believing in Lyme When Looks Are Deceiving

Credit: Lyme Chick's Facebook page

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.

Continue reading