Tag Archives: lyme

Sometimes You Just Have to Laugh

Humor, Mental Health, Staying Positive December 4, 2012 Comments: 2

Last winter, housebound and often in bed, I watched the video above many times every day. Who knows why it makes me laugh out loud—though I will admit, dogs and food rank as two of my favorite things.

At any rate, more than 123 million YouTube views say I am not alone. I am pretty sure I accounted for a healthy portion of that number.

Let me just say that it’s a downer struggling to recover from a disease that affects your mind, your body, your family life, your career, and your bank account. Sometimes you just have to look to humor to get by.

To my daily task list (swallow pills, infuse IV drugs, inject blood thinner, follow steps to detox, rest, exercise (baby steps), rest some more, and eat loads of vitamin-rich food), I have added: laugh.

Continue reading →

The Train Not Taken (with apologies to Robert Frost)

Mental Health, Tips for Family and Friends December 2, 2012 1 Comment
Mom at 96, September 2012.

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 →

An Encounter a Day

Battling Isolation, Staying Positive December 1, 2012 Leave a comment

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.

Continue reading →

Running on Empty

Activity or Rest? November 29, 2012 1 Comment

Credit: Taylor a’s Flickr stream

I did it again just the other day. I ran out of gas.

I accepted an invitation to meet my friends Susan and Eva for lunch in Maryland 25 miles away from my Virginia home, even though I already had a doctor’s appointment on my calendar for that morning.

I climbed into my car and drove thirty miles to my appointment. Then I got back in the car and, instead of going home, I drove to the restaurant. And then I ran out of gas.

Meaning that I hit the wall physically. And this keeps happening to me because I can’t get it through my head that lyme means you never have the energy you wish you had. You want to do things you’d normally do, but wishing doesn’t make it so.

I’m learning to think of my energy like the gas in my car.  At this point in my treatment, I would say I have about 1/8 of a tank. Continue reading →

Lyme-Brain? 5 Tips to Help Your Flagging Memory

Lyme and the Brain November 18, 2012 Leave a comment
  1. Calendar. I use an actual calendar, not the virtual version on my computer, and keep it in the kitchen where I’m most likely to see it. The blocks for days are big enough to hold not just appointments, but my task lists. I cross items off as they are completed; with this visual record in plain sight, things are less likely to slip through the cracks.

    Post-its are the visual cues that help me keep track of everything from doctor’s appointments to sticking to 50% of what I think I can do instead of being too active and triggering a set-back.

  2. Post-its. A calendar is great, but on bad days when my mind isn’t working well, I’ve still missed things. A cheerful neon post-it placed to catch my eye – on the coffee pot, for example – serves as a reliable back-up prompt that I can literally carry with me when I leave the house if I feel the need.
  3. Smartphone apps. Our phones are always at hand, so if you’ve got a smartphone, don’t overlook reminder apps, the high-tech version of my post-its.  With many options, you can find one ideal for your needs.
  4. Daily symptom log. Remembering everything you want to tell your doctor can be a challenge. I use my daily symptom log  to make a concise list before appointments, so the doctor and I have an accurate picture of how I am doing over time.
  5. A system for organizing paperwork. Dealing with a major illness is a big job. I’ve felt overwhelmed trying to keep the deluge of information straight: notes, tests, doctor’s visits, bills, insurance claims, medications, treatment instructions. Even if lyme isn’t affecting your memory, you can’t remember all that! So you need to be able to put your hands on critical information when you need it. Create a notebook or folder system and file each item as it comes along. (Too much to handle right now? A former lyme patient and her doctor have done the work for you: My Lyme Guide.)

Afraid to Exercise? Start by Doing Half

Activity or Rest? November 18, 2012 Leave a comment
A little exercise can be just enough. Credit: Flickr stream of kh1234567890

A little exercise can be just enough.
Credit: Flickr stream of kh1234567890

In the middle of my second bout with lyme following a new tick bite, treatment has reduced the severity of symptoms in recent weeks. I’m no longer confined to bed by the terrible pain that was very nearly intolerable.  I’m no longer on round-the-clock pain meds. But I still have debilitating symptoms. I do best if I rest.

The more active I am, the more the pain, numbness, and fatigue escalate. I try to cope with the help of hot baths, heating pads, and meditation. But on many days when I get up off the sofa and move around too long, I have to turn to pain meds.

What’s too long? That seems to be different for everyone, and different at various points in recovery. But one thing I’m sure of: Some exercise every day is important for healing.  Continue reading →

5 Things to Know When Someone You Love has Lyme

Lyme Basics, Tips for Family and Friends October 3, 2012 Comments: 8
 
  1. Lyme is a roller coaster. Your friend or family member may make plans, then cancel at the
    Credit: Courtney Fox

    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.

  2. 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.
  3. 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.
  4. 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.