Tag Archives: pain

It’s been four years!

Uncategorized March 3, 2022 1 Comment

Wow. My last post was 2018. So much has happened since then. And now I’m living in southern Maryland, with a view of the Chesapeake Bay. I can even see it when lying in bed (above), which is awesome since I still spend a lot of time in bed.

I think I might be well now except for a lot of stresses that set me back, and two tick-bites that may have set me back though we treated right away, my doctors did I mean.

I’m wondering about using my limited energy to blog again. Is anyone out there? Can I be helpful?

Something I’ll consider seriously in the coming days. Because we always have to prioritize, those of us with chronic illness. I do need more things to do lying down, though, so in addition to a book idea I have, perhaps I’ll return to this space regularly.

If you are reading this – I hope you are doing well on this day. I focus on one day at a time now, and I’ve gotten pretty good at not worrying about the future so much. Try it and see for yourself if you can find some peace that way.

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

Lyme Basics, Symptoms: How Do You Feel?, Tips for Family and Friends, Video April 29, 2015 Leave a comment

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

Co-infections, Lyme Basics, Symptoms: How Do You Feel?, Tips for Family and Friends March 7, 2013 Comments: 4

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

Lyme Basics, Mental Health, Tips for Family and Friends January 21, 2013 Comments: 14

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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

Battling Isolation, Lyme Basics, Staying Positive, Tips for Family and Friends January 13, 2013 Comments: 5

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 →