“The Scream” by artist Edvard Munch.
Credit: Christopher Macsurak’s Flickr stream
Sometimes during my recovery, I want to scream. But I tell myself to hang on. Because with Lyme, you often have to feel worse to get better. Welcome to the Jarisch-Herxheimer Reaction, or “herxing.”
Today, for instance, my chest is tight and burning, and there’s an uncomfortable sensation like ice water running through my veins. I feel ill all over, like you do when you have the flu or a high fever.
There’s more: Joints in my left foot throb, along with both knees and hips. My legs and arms are on fire with a burning pain deep in the tissue, as is my digestive tract. Add in weak muscles and low energy, and you can see why I’m on the sofa.
My mind might as well be underwater, my thinking is so muffled and remote. (As you may have guessed, it’s actually taking me several days to write this post). Chills crawl over my lower back and hips.
On the worst days, I don’t feel up to reading or watching a movie or visiting with a friend by phone. All I want to do is lie here. I’m good with that. Here’s why.
Notes and notepads: I can never have too many.
Please share your favorites in the comments section below.
Mom at 96, September 2012.
Credit: Catherine Fox
I’m very sad today. My mother, 96, one of the most extraordinary, life-filled people I have every known, has entered hospice care in my sister’s home, where she has been lovingly cared for over the past several years.
Naturally, I wanted to travel there to see my mother and to support my sister. I know I don’t have the stamina to drive almost five hours, and when I am sickest my lack of concentration makes me a danger on the road so I don’t get behind the wheel.
I decided to try the train. All I have to do is sit there, right? Amazing how the voice of lyme denial tries to get me to do things I shouldn’t.
My doctor told me that since we are adding meds this month for the next level of treatment, I should go now if I must, before the herxing increases. Note the “if”; she understands that I want to go—that this is my mother—but I could hear the reservations in her voice.
Today is the day I’d planned to go. I made the decision last week when I felt better. I came to my senses two days ago. Continue reading
- Lyme is a roller coaster. Your friend or family member may make plans, then cancel at the
Credit: Courtney Fox
last minute because they’re suddenly overcome by illness, fatigue, pain—or an array of other symptoms. They are not blowing you off; in fact, they are probably intensely disappointed. Let them know you’re happy to reschedule.
- Lyme is debilitating. Imagine how frustrating it would be to find yourself unable to walk to the mailbox in front of your house, fix meals and empty your dishwasher, or drive yourself places. You can make a huge difference by offering help with a task or two.
- Lyme symptoms can be invisible. If you find yourself thinking, “My friend looks terrific,” catch yourself. Here’s the key: Ask, “On a scale of 1-10, with 1 being terrific and 10 the absolute worst, how are you doing today?” The answer may surprise you.
- Lyme hurts the bank account as well as the body. The sad fact is that insurance often doesn’t fully cover treatment for this disease. And Lyme patients lose income if they are too sick to work. Be sensitive to that; your friend may be spending every penny on getting well, with none left over for a movie or meal out. Suggest free things, or make clear your plan to treat.
Lyme makes eating a challenge. Some patients suffer stomach trouble from tick-borne infections and/or medications used to treat them. Plus, certain foods actually increase the inflammation at the root of their pain. Nutrition is key to healing. Your friend or relative will be so grateful if you get them a gift certificate for carry out or offer to make a meal—and ask which restaurants/foods are the best choice.
For more insight, you might want to read some of these posts – or just browse around yourself using the categories search on the right.
5 Gift Ideas for Someone with Lyme
5 Ways to Help Others “See” Lyme
Believing in Lyme When Looks Are Deceiving
and here’s an essay from Spirochick addressing an interesting disparity: Empathy: Cancer versus Lyme
For the latest news and research, visit www.facebook.com/LifeLoveLyme.