Tag Archives: chronic fatigue

Chronic Fatigue or Feeling Tired?

by Kerry Heckman
#MyLymeLife

There is a difference between chronic fatigue and feeling tired. Have you developed chronic fatigue as a result of your Lyme disease?

 

I remember the moment when my husband said, “I get it,” and I knew he did. It was the time he’d developed an acute bladder infection and was stricken with a high fever. I had to go to work, so he took himself to urgent care. Later that evening he said, “I think I was putting on a show at the doctor’s office, I probably didn’t even seem sick. Then, as soon as I got home I completely crashed. I haven’t moved from this chair since.” That was it. The feeling I’d been trying to describe to him for years. It’s like using every last bit of adrenaline to get through a show, only to immediately collapse in the wings afterward. He could finally understand what I go through on a daily basis.

Everyone can relate to what it feels like to be tired. There are a million things to do and never enough time in the day. We stay up too late, clinging to the few hours we’re not working, and then slog through the morning fueled by cups of coffee.

Chronic fatigue—a common symptom of Lyme—is completely different. Chronic fatigue is a medical diagnosis and cannot be healed by a good night’s sleep and a day without commitments. It is there when you wake up, there with you all day long, and there when you fall asleep. Chronic fatigue presents differently in every person. Here are a few perspectives from others in the Lyme community:

“I feel like I am walking around with weights attached to my body.”
“The fatigue is like every little thing that you need to do, like say fold laundry, that would take a healthy person a half hour, takes a person with Lyme hours. We have to rest in between. I actually spend more time resting up to do something, than actually getting it done.
“Not quite up to starting the big game, but the big game is every day.”
“Feeling like you have been hit by a train or have a terrible case of the flu and are incredibly weak and tired, and that you can only get off the couch or out of bed with a huge effort. It is hard to think straight and nearly impossible to get anything done.
“It feels like you just finished running a marathon that you hadn’t trained for…and at the end of the marathon, you also got the flu and also got struck by lightning, which caused everything in your body to shut down.”

My available energy comes and goes in cycles, and sometimes it’s difficult to know how much energy I will have to spare. This is especially true in social situations, which seem to be the most draining. One day, I had the energy to go out with friends. I felt great, better than I had in months. We got Mexican food and talked for hours. We were joking and laughing so much, I almost forgot about my illness. I thought, I must be getting better, I haven’t had this much stamina in months. When I went to sleep my spirits were high.

Then I woke up and I couldn’t get out of bed for two days.

This is the difference between chronic fatigue tired and just being tired. There is a limit to what a person can do, and when they overdo it, it takes days to get the energy back just to take a shower. This was the feeling I found so hard to describe to my husband, which he finally understood when he got a serious infection.

Some Lyme patients are wheelchair bound, or spend months or years confined to a bed. I am fortunate in that, as long as I don’t run myself into the ground, my bouts of fatigue last only two to three days. I can’t imagine what it is like to go days on end and never feel the energy to get out of bed, but that’s the harsh reality for many Lyme patients.

It’s hurtful and invalidating when people compare chronic fatigue to just being tired. Lyme patients’ fatigue is caused by our bodies constantly fighting off illness, then on top of that we have to do everything else other people do on a regular day. We get so used to it, we forget what it feels like to be normal.

Next time, when you’re discussing your chronic fatigue and someone says, “I’m tired, too,” politely remind them it may sound like the same thing, but there is absolutely no comparison.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Groundhog Day: Casting a Shadow on Lyme Disease

by Jennifer Crystal

The repetitiveness of living with Lyme disease can feel like Groundhog Day, over and over again.

 

When I was studying in France, I had dinner with my landlady on Groundhog Day. Except, as I describe in my memoir Et Voilà, “there are no groundhogs in France, so February 2nd is instead marked by a national celebration of crêpes.” As we sat down to a decadent meal of savory and sweet crêpes, I tried to explain to my landlady the tradition of Punxsutawney Phil. She gave me a look that said, you must just sound crazy because you don’t speak French well.

Now that I am fluent in another language—Lyme disease—I have similar trouble explaining myself. Because so many of our symptoms are interior, Lymies have difficulty getting healthy people to understand how we’re feeling. One aspect that’s particularly tough to communicate is the repetitiveness of the disease: days that roll into one; daily medication routines; obsessive thoughts; word and song iteration. Lymies tend to feel like Bill Murray in the movie Groundhog Day, when his character discovers he is stuck living the same day over and over.

Unfortunately, our problems don’t resolve in the span of a two-hour movie. Instead, we find ourselves playing out the same scenes day in and day out. When I was at my sickest, I’d go to bed hoping I’d feel a little better in the morning, and wake up feeling either exactly the same, or worse. Because of Herxheimer reactions and the ebb and flow of Lyme treatment, the worse-before-better phenomenon became frustratingly common. With each new day, I didn’t know if I’d move forward, stay put or take two steps back. Rarely did I take a step forward, and even when I did, it would be quickly followed by one or more steps back.

Most days I’d wake up feeling like I hadn’t slept. Sometimes I was exhausted from eight or more hours of harrowing nightmares. I’d want to roll over and go back to sleep, but couldn’t. I had to stick to a very specific medication routine. Each morning I’d attach a bolus of antibiotics to my Peripherally Inserted Central Catheter (PICC line) and watch it drip for an hour while I ate breakfast. Due to dietary restrictions, that breakfast didn’t vary much. Afterwards I’d swallow at least ten pills of various shapes, sizes, and colors, then eat a spoonful of peanut butter, the fatty food necessary to absorb a glowing anti-malarial syrup often referred to as “liquid gold”.

After breakfast I’d try to send a few emails, though that was dependent on how stiff my fingers were and how thick my brain fog. Some days I could write paragraphs, and eventually wrote pages of my book. Other days I couldn’t type or hold a pen, and couldn’t concentrate on even one sentence. On those mornings I’d retreat back to bed, sometimes dozing off but often just lying there, listening to the clock tick.

This went on until lunch, when I’d break for another meal and more pills, and then I’d try again, often unsuccessfully, to nap in the afternoon. I’d get up in the evening when my family came home and would try to sit at the table long enough to hear about their days, which had variety. They did different things at work and school. They had meetings in different locations. They had coffee with different people. They meant well when they asked me, “And how was your day?” but the question made me cringe, because I always gave the exact same report. After awhile, I was able to drive myself to appointments, meet friends for lunch, and tutor high school students in French. But for a long time—years—my days were very, very quiet.

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That’s not to say my brain was quiet. Though I didn’t give it much fodder since I couldn’t read, watch TV, or focus on audiobooks or music, the spirochetes in my head latched onto a time my brain could do all those things. Each day I’d wake up with a song in my head. There was no rhyme or reason to which song my brain picked; when I woke up it was just there, playing over and over and over as a perpetual soundtrack for the day.

Everyone knows how annoying it is to have a song stuck in your head. But imagine what it’s like when you’re bedridden and can’t go out into the world and do something to make you forget the song. Imagine what it’s like when your head already feels like its filled with molasses, when you are exhausted but can’t sleep, when you have nothing to do but lie there and “listen”.

Sometimes, it wasn’t just one song. As the day went on my brain would add to its repertoire, so that I’d have three or four tunes playing at once. This cacophonous mashup made me want to shake my head and scream.

It wasn’t just songs that were stuck in my head, either. Ideas played on repeat, too. Many Lymies describe having obsessive thoughts. For me, it was like I had a voice in my head narrating lines from my book or reactions to conversations I was a part of. It would read those lines again and again. The needle in my head was stuck. My world was not quiet; it was maddeningly repetitive.

Now that I’m in remission, I can tell when I’m having a flare-up, because I start thinking of everything twice. It’s not a conscious choice. It’s just the place my brain goes when its overtired. That’s a sign for me to rest, to have a neurofeedback session, to get some cranial sacral therapy. No matter how well I’m doing, I still always have a song in my head. Always. Right now it’s “Payphone” by Maroon 5. I’m not at a payphone—haven’t used one in years, in fact—but that’s where my brain is. Luckily, my daily songs play in the background now, because so much living is happening in the foreground. The songs and the occasional word iteration are bearable, because in general, I am taking daily steps forward. I am even back to eating (gluten-free) crêpes.

I lived the movie version of Groundhog Day for a long time. I promise you, with proper treatment the long winter does eventually end. Here’s hoping that Punxsutawney Phil will not see his shadow this week, and you will have an early spring.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Tackling To-Do Lists When You’re Too Tired To Do So

When Lyme, or any chronic illness, turns once mundane tasks into the near impossible.

 

by Jennifer Crystal

With the calendar turned to September, school has started and life for many people has picked up speed. A new school year brings new schedules to juggle, and to-do lists that grow longer by the day. Everyone has a to-do list, whether you have kids or not, and even in this technological age, staying on top of tasks can be overwhelming.

For Lymies, or anyone who is sick, overwhelming can quickly shift to impossible.

In my healthy days, chores like “empty the dishwasher” or “set the table” were just part of daily life, not tasks I had to think about and plan for. My to-do lists had items like “clean garage” or “call so-and-so back,” and while some of those tasks slipped by the wayside, I could generally organize and prioritize them without much stress. All of that changed when I got sick. Suddenly, I had to choose between making the phone call or setting the table, because doing both—let alone at the same time!—would wear me out to such an extreme that I might suffer for days.

I remember telling a friend, over the phone, that I was mad at myself for having done the laundry that day, because I wasn’t able then to go to dinner with my family. “If I’d saved my strength, I might have had the energy to go out,” I lamented. She replied, “Maybe you should talk to your therapist about not obsessing over such little decisions.”

The thing is, they weren’t little decisions, at least not at the time. It was 2007; after more than a year of successful treatment, I’d relapsed. Back on antibiotics and bedridden once more, my physical and neurological symptoms were worse than they’d ever been. I struggled with basic functions like showering and preparing meals.

Now, from a standpoint of wellness, I can see how absurd choosing between laundry and dinner must have sounded to my friend. I can understand that for a healthy person, parsing out one’s energy in such minute ways can seem obsessive. But for a Lymie, it’s reality.

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I’ve yet to meet a patient of any illness who has dedicated energy to cleaning their garage; priorities simply shift when you’re ill. But what about things that have to get done? The phone call to insurance that must be made if you want your medication to be covered? The appeal letter that must be written when that coverage is denied again? With Lyme, these simple tasks become missions that are so overwhelming they can be paralyzing. Worse, the stress brought on by not being able to do them—but knowing you have to—can send a Lyme patient into a tailspin of anxiety, causing spirochetes to rev up and symptoms to increase. It’s a vicious cycle, and it can feel like there’s no way out.

One night during my relapse, I shared this conundrum with a different friend on a different phone call, one that proved to be worth my energy. He didn’t belittle my concerns. Instead, he suggested that I think about all of the tasks I needed to complete in a week, and then create a separate to-do list for each day. I wrote out a long list of everything on my plate, and then together we prioritized what absolutely had to get done and when. Next, we put tasks together in manageable groups. Drying my hair and ironing could not be done on the same day. If I made an insurance call on Monday, I wouldn’t make another until Thursday. The real clincher was, if something was scheduled for Thursday, I was not allowed to worry about it until then. “It’s on Thursday’s list,” my friend said. “You can’t think about it until then.”

This advice was game changing for me. Life—beyond the stressors and physical pain—became manageable, and that invariably helped me to heal faster. Now that I’m feeling so much better, I still make to-do lists in the same way, because I know doing so will help me maintain my health. I need to continue to function at a steady pace. When my mind starts to slip into worrying about what’s happening on Wednesday, I literally say to myself, “You’re not allowed to think about it until Wednesday.”

It’s good advice for anyone, really, whether you’re managing a chronic illness, a large family, or a hectic schedule. I have one more piece of advice to add: be sure to put fun things on your to-do list, too. I certainly won’t chide you for prioritizing “eat chocolate” or “smile.” In fact, I’ll say you’re allowed to worry about those things every day. Checking those items off your list may just shift impossible to I’m possible.


Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. [email protected]