Category Archives: Symptoms: How Do You Feel?

What Does Chronic Fatigue Mean, Really?

 

 

IMG_1843

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

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

When Lyme Disease Goes to the Heart

Carolyn and her dog x with the friends helping her get the xx treatment.

Carolyn with her pooch Betty and, from left to right, the friends who have banded together to help Carolyn get treatment: Mark Gordon, Jim Pettengill, Teresa Gordon, Bruce Hoppenworth, Marianne Antonelli, and Gary Antonelli. Not pictured: Maggie Gobie.
Photo: Randy Martinek

Lyme affects the heart in more ways than one. Just ask Carolyn Ross, who was loving the outdoor life on a Virginia horse farm back in 2007. Then ominous change came overnight.

She can tell you the day her health crashed: December 27. After a holiday party, flu-like symptoms came on, and a few days later she noticed a rash on her arm.

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

Where’s the Anxiety Coming From? A Surprising Answer.

IMG_1468

Photo: LifeLoveLyme

This morning when I woke up, I realized that I actually felt refreshed.

I had not endured a night of constant shifting trying to relieve body pain. Or of bolting up eyes wide open at one a.m. and then finding myself stuck awake with raging insomnia for four or five hours. And the thing that struck me most this morning was, I felt at peace.

Lyme disease can affect every part of your body, but many people don’t realize how hard it can hit the brain. For me, one of the biggest symptoms has been crushing anxiety.

I wasn’t particularly surprised; when you’re in constant pain, can’t work, can’t dress or cook or do your own grocery shopping, you lose your sense of self and the worrying escalates. Will I ever feel ok again? Will I ever do the things I used to do, will I be able to work? How am I going to survive financially?

My worrying became debilitating, full-blown anxiety. A therapist helped me deal with it, and medication took the edge off on many tough days.

Here’s a surprise: I had no idea that that the anxiety I struggled with isn’t just triggered by the stress of this chronic illness, but by actual physiological changes in the brain kicked off by Lyme and co-infections.

Continue reading