Tag Archives: restricted 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

Why You Should Never Make Fun of a Restricted Diet

by Kerry Heckman
#MyLymeLife

For some patients with chronic illness, including Lyme disease, a restricted diet can improve their lives. So why the ridicule?

 

The jokes are everywhere. There is a popular meme that reads, “It’s gluten-free, sugar-free, dairy-free, soy-free, egg-free, & fat-free. They call it ‘water’ and you can buy it at Whole Foods.” Implying that the only thing someone on a restricted diet can have is water and only shop at grocery stores with a reputation of being pretentious. (Not that anyone on a gluten-free, sugar-free, dairy-free, soy-free and egg-free diet would ever eat anything that was fat-free, but that’s beyond the point).

I’m on a restricted diet and I’m often embarrassed to talk about it. Why am I embarrassed? Because there is a general consensus that special diets are a fad and only obnoxious people eat that way.

Why do I eat the way I do? By the time I was 34, I had already been diagnosed with two autoimmune disorders, later to be correctly diagnosed as chronic Lyme disease. I was in so much pain I couldn’t turn over in my bed without screaming. The doctors found so much inflammation in my spine and muscles in my back I was hospitalized for five days and underwent two biopsies. Conventional doctors offered no viable solutions.

An integrative medicine doctor encouraged me to try something called the autoimmune protocol diet, which is an extremely restrictive, low inflammation diet with no grains, no dairy, no sugar, etc. After only two weeks on the diet my back pain subsided and I was finally able to sleep. Eventually, the diet became too restrictive for me, so I modified it to meet my needs. Basically, I avoid processed foods, gluten, dairy and sugar. I had to give up a lot of the foods I love, but it changed my pain level from a steady eight to an intermittent two. When it came down to living in constant pain or giving up gluten, I had to choose the latter.

Nevertheless, I still get rolled eyes and laughter when I discuss my diet, even from people who know I’m sick. To be honest, before I got sick I probably would’ve reacted the same way. What people may not understand is that we don’t want to eat this way, we have to eat this way. We love gluten. Gluten makes doughnuts doughy, bread spongy, and pasta unsticky. It was next to impossible to give it up, and I still miss it every time I pass a bakery or pizza place.

The harsh reality is there has been an upsurge in people diagnosed with autoimmune and chronic diseases. You probably know someone with one of these diseases. Do you remember knowing so many people with such diseases the 1980’s or even the 1990’s? Probably not. I know I didn’t. Autoimmune disorders and chronic immune system dysfunction numbers are skyrocketing.

Integrative and functional medicine practitioners believe these illnesses are caused in part by the standard American diet. If people better understood the link between of certain foods and inflammation, they would realize it’s no laughing matter. We need a wake up call that our immune systems cannot handle all these inflammatory foods. For some patients with chronic illness changing their diet can save their lives. For a good example, read about Dr. Terry Wahl’s battle with MS and how she got her life back when she changed her diet.

Consider approaching the issue from a place of compassion. What if you had to give up your favorite foods? What if one piece of birthday cake made you ache for days? What if you had to stop going to all your favorite restaurants? What if you couldn’t have a glass of wine on a Friday night?

I understand restrictive diets are challenging to accommodate in social situations. It’s why many people on these diets stop going out entirely, leading them to social isolation and even depression. They are forced to choose between friendships and unrelenting symptoms.

In these situations the host can offer to dine at their own house or choose an activity that doesn’t involve food. As the demand for healthy options keeps growing, I am constantly finding new restaurants that fit my dietary restrictions, so maybe ask your guest where they are able to dine.

There are a few areas of concern one should be conscious of when discussing dietary restrictions. One is that it is very expensive and time consuming to eat a low-inflammation diet; therefore, people with limited resources might struggle to maintain it. A second concern is that some people don’t have dramatic results from the diet, which can be disheartening. And finally, some people take restricted diets to the extreme so it can itself become an eating disorder.

Everyone deserves to eat what they want without being put down. We have to stop mocking people who try alternative ways feel better. There are people who don’t have chronic illness who follow a special diet and the reasons are still valid—such as losing weight, gaining energy, and feeling better about themselves. Someday not so far in the future, no one will be on a restricted diet, because everyone will be.

I love lighthearted fun and joking around, but it’s time to take this one off the table.


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.