Tag Archives: lyme diet

Reframing Restrictions

by Jennifer Crystal

A few months ago, someone told me that my life has a lot of restrictions.

From a certain perspective, this statement seems true. To thrive in the context of chronic tick-borne illness, rather than to merely survive it, I do have to adhere to certain rules that probably seem restrictive to the average healthy person. Before I got sick, I no doubt would have thought such a schedule was restrictive, too.

What exactly are these “restrictions”? I need to nap for a couple hours every afternoon. I need to make sure I’m in bed around 10:00 p.m. I don’t eat gluten or processed sugar, and I don’t drink alcohol or caffeine. I pace myself physically, planning out travel and exercise so I can enjoy activities rather than become depleted by them. I avoid over-stimulating events like concerts and fireworks that can rile up my otherwise controlled neurological symptoms. I don’t watch Game of Thrones.

These parameters are what allow me to function. It’s taken time, reassurance, and a perspective shift to recognize these boundaries are ensuring my health. In order to do a lot, I’m stinting myself a little. Without these “restrictions” in place, I would quite simply relapse.

Though I have generally accepted the limits or parameters on my life, sometimes I still do get frustrated by them. I’d prefer not to have to cut an afternoon or an evening short because I have to sleep. I don’t like missing out on things. I don’t want my needs to hold anyone else back, and I try not to let them (“You guys stay out; I’ll take a Lyft home.” “I’ll ski with you in the morning; you stay for the afternoon while I nap.” “I’ll drive separately to the party, so you won’t have to leave early when I do”).

Because I make these efforts, it hurt when someone told me that my life has too many restrictions.

It also gave me pause. I realized restrictions was not a word I had ever used before. I had often used the word “limitations”. When giving a quick overview of my decades-long struggle through misdiagnosis, diagnosis, treatment, relapse, and remission, I have said, “It was really bad for a lot of years. Luckily I’m much better now, though I do still have certain limitations.”

Limitations seems not as negative as “restrictions”, but it’s hardly positive, either. Using it gives other people permission to see my life as limited, when in fact I want them to appreciate the truer glass-half-full version of me.

I don’t have restrictions. I have needs.

Sure, my needs are different from those of others. But the fact is, everyone has needs. Introverts, for instance, need time alone. Extroverts need to recharge with others. Shift workers need to sleep during the day. These are simply things people need to do to live their best lives. To be the best version of themselves.

Sometimes that means putting other people’s needs first, to make sure they’re taken care of, too. Parents need to take time off work when their child is sick. They need to leave a dinner party earlier than they might otherwise have, so they can get their child to bed.

What matters is not what these boundaries of life are, but how they are viewed. Should we bemoan all that we can’t do? Or should we appreciate all that we can do?  I could say, I can’t work a 9-5 job and I can’t celebrate the New Year at midnight, and I can’t go to a Dave Matthews concert anymore. Or I could say, by not doing those things, I can work part-time. I can write. I can avoid brain fog. I can exercise. I can visit friends.

There was a time, when I was completely bedridden, when I couldn’t do anything. I know how lucky I am to have gotten as well as I have. Some Lyme patients are paralyzed. Some have schizophrenia. Other people have cancer and have to endure chemotherapy. There are veterans who suffer PTSD and limb amputation, people who have traumatic brain injuries and strokes and terminal diagnoses.

Even those people can choose how they view their restrictions. Take Jean Dominique Bauby, the former editor of French Elle magazine who suffered a stroke that left him with “locked-in syndrome”. His cognitive function was fine, but the only part of his body he could move was his left eyelid.

So what did he do? He figured out a communication system whereby he blinked letters to a scribe. It was a painstakingly slow process—it took him two minutes to blink out one word—and yet he managed to write an entire book, The Diving Bell and the Butterfly. Instead of being weighed down by his situation, Bauby found a way to shine his light out into the world.

He inspires me to see my own limitations in a new light. When I looked up restrictions in Roget’s Thesaurus, I found a long list of negative words, but in the middle of it, in capital letters, was the word CARE.

To honor your needs is to care for yourself, to free yourself from victimhood and, instead, turn yourself into a victor, a Lyme warrior. To honor your needs is to see yourself as chronically awesome rather than chronically ill.

If someone else can’t see the beauty of that reframing, that shortsightedness is their restriction, not yours.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: lymewarriorjennifercrystal@gmail.com

In The Lymelight Episode 3

Welcome to In The Lymelight: a show about…well…Lyme Disease.

 

In the Limelight aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also everything in between that is meant to make your day a little bit brighter. Hosted by fellow Lymie and alpaca lover Alex Moresco and self certified iced coffee sommelier Sarah Aiken: we hope you enjoy listening in as much as we enjoy talking.

In our third episode of In The Lymelight, we had the opportunity to sit down with Sarah Greenfield, RD CSSD to chat about something incredibly important to those of us with Lyme disease: gut health. Sarah is a gut health expert that studied under a LLMD and lives in the Los Angeles area. Sarah explained the basics of gut health, breaking sugar addiction, tips on how to heal your body if your medication is making you sick and how the gut is directly connected to the brain and truly rules our body.

While episode three is a tad bit longer than our normal half hour, Sarah provides copious amounts of factual information that can truly make a difference to those of us battling Lyme.

To keep in touch with Sarah Greenfield, RD CSSD, you can check out her Instagram and read her website.


Opinions expressed by contributors are their own.

For interview suggestions, information or just to say hi- you can connect with us on Instagram at @alitmoresco and @saraiken.

 

lyme diet

Adjusting to a Lyme Diet

by Emily Croot
#MyLymeLife

Learning to Love What There is to Eat When You’re on a Lyme Diet

 

For anyone familiar with the Lyme diet, you will know that while it is a useful healing tool, it’s also incredibly restrictive and difficult to adopt. Most Lyme patients are usually told to reduce foods that cause inflammation and this means eliminating gluten, lowering carbohydrate intake and limiting or entirely stopping dairy and sugar.

When I first made the transition to the Lyme diet I was a new college freshmen. The day after the doctor prescribed the diet I remember walking into the dining hall and letting out a cross between a laugh, a groan and a sob. There was absolutely nothing there I could eat. Spaghetti? Nope, for it contained tomatoes and gluten. Tacos? No again, corn and cheese. A veggie burger perhaps? That contains beans and wheat. A simple sandwich then? Well, not one with either chicken or bread.

Sitting down to eat with my plate of lettuce and carrots I suddenly experienced a very strong desire to throttle my doctor. She said that making the transition might be difficult, but that eventually I would adjust. But this diet was impossible! When exactly is ‘eventually’ anyway? Would that be before or after I died of starvation? Two minutes later I stalked out of the dining hall and proceeded to down a pint of ice cream while watching Parks and Recreation followed by a 30 Rock marathon in my dorm.

This was not a good start to my new Lyme diet.

Although I had been a healthy eater before Lyme, starting at Phase 1 of the diet seemed less of an uphill battle and more a cliffside plunge. Gone were my precious black beans, tomatoes and bell peppers. Locked away were my bananas, yogurt and peanut butter. And I hadn’t even begun to mourn the loss of ice cream, chocolate, and cookies!

As my Lyme disease advanced, I was forced to medically withdraw from college and return home. Despite the setback, I continued to plug along with the doctor’s orders. Breakfast was the easiest meal, eggs and a smoothie, but I missed slathering jam over English muffins or sharing extra cheesy homemade corn grits with my mum.

Lunches and dinners were a nightmare of endurance. Although we had Recipes for Repair: A Lyme Disease Cookbook, my family and I longed for our old standbys. Almost every one of our old recipes had an inflammatory ingredient and most of my dinner preps would end with me letting loose a couple choice expletives (though this  exercise was not limited to the kitchen).

During one such meltdown my mother gently coaxed me out of the kitchen to the living room, promising she would take care of dinner. She made me a cup of tea and let me cool off before joining me. She had noticed my increasing frustration with the diet and, though she supported my efforts, she recognized it was doing more harm than good. My mum agreed that gluten, dairy and sugar needed to be reduced but she recognized we couldn’t handle going all the way to Phase 1 of the diet. Moreover, after consulting a second doctor, we concluded my case didn’t warrant Phase 1 and switched to my mother’s more sensible dietary plan.

The next day we went on a grocery store shopping spree followed by a raid of our library’s cookbook section. When we returned home with our arms full of books and shopping bags, we were ready to tackle some new recipes. Our kitchen was now stocked with berries of every color, a forest of leafy greens, a myriad of strange and exotic vegetables, nuts and seeds of every shape and size, and spices from around the world.

With my cast-iron skillet in hand and a renewed enthusiasm for cooking, we figuratively ate our way across the planet. One night, as I wiped my eyes from the stinging onions and pungent garlic, the lights from St. Peter’s Basilica twinkled outside my window. The next night we sat on a New England beach, the salty breeze stinging our eyes as we slurped seafood chowder (dairy-free and gluten-free naturally). In the mornings we inhaled the sweet air of the English countryside over a bowl of fresh oats, honey and blueberries. And so each meal brought us to a different corner of the globe.

The anti-inflammation diet had become less of a schlep for me through culinary purgatory and more of a gastronomic expedition around the world. Although  are still times when I slip up and sneak a fresh baguette or a wedge of extra sharp cheddar into the grocery cart, those times are rare and enjoyed on only very special occasions.

Since starting mum’s dietary transition, I have fewer bad days and can manage my symptoms more effectively. Now I hardly give my restrictions a second thought. Who cares that I can’t have pizza when there’s Moroccan-spiced salmon, chana masala, or delicata squash soup?

Bon Appétit!


Opinions expressed by contributors are their own.

Emily Croot is a student, writer, and cook splitting her time between New Hampshire and Union College in New York. She wants to help others and change her little corner of the world one person at a time.