Tag Archives: living with lyme disease

red sox_jennifer crystal

What Can the Red Sox Teach Us About Surviving Tick-Borne Illnesses?

by Jennifer Crystal

When I told my family I was thinking of moving to Boston, my mom said: “As long as you don’t become a Red Sox fan.”

I had grown up a Mets fan, thanks to my baseball-loving grandfather who had watched every game and taken me to many. The family remained loyal to the Mets, but somewhere along the way my mother also became a die-hard fan of that other New York team, the one that shouldn’t be mentioned in Boston.

The first time I went to a Red Sox-Yankees game at Fenway Park, I wore a Red Sox t-shirt, with a tiny Yankees pin over my heart. Even though I looked the part, I didn’t really understand the Red Sox fans all around me. Why did they—and generations of their families before them—continue to support a team that had been purportedly “cursed?” A team that,—until 2004—had not won a the World Series since 1918?

When I discovered the answer, I realized that being a Red Sox fan is not unlike someone surviving one or more tick-borne illnesses.

Despite being loathed by Yankees fans and chided for their bad luck, Red Sox fans held on to their belief that their team would eventually “reverse the curse”. They did this because they had something their rivals did not: faith. In addition to complaining constantly during those 86 forlorn years, they did something else, too. They remained loyal, ignored the naysayers, supported their team, and adopted a get-back-on-the-horse attitude.

I had to do the same thing when I was fighting for a diagnosis, and then again when I was undergoing treatment for Lyme disease and two of its co-infections, babesia and ehrlichia. It took eight years for me to get an accurate diagnosis.  During that time I had waxing and waning symptoms such as fever, flu-like exhaustion, hives, and migraines. Eventually, I became completely bedridden, unable to work or care for myself. Even with my obvious physical deterioration, lots of people didn’t believe me. Even some doctors told me “you’re just being lazy”, “you just need to exercise more”, and “it’s all in your head.”

It wasn’t always easy to ignore these comments, especially when I was feeling so physically and emotionally fragile. I sometimes wondered if these people were right. But deep down, I knew they were not, because I knew my own body. I was an overachiever; laziness was not in my DNA. I was a skier and a runner, and desperately wanted to be out doing those activities. My fevers, rashes and headaches were not psychosomatic. I knew there was something physically wrong with me, so I persisted in searching for answers.

Had Red Sox fans given up after their team was cursed, they wouldn’t have had the glory of seeing them finally win the World Series 86 years later. Had I believed the naysayers, I would still be bedridden. I wouldn’t have ever gotten an accurate diagnosis, nor would I have tasted the glory of remission.

It didn’t take me 86 years to achieve remission, but it did take two once I started treatment, and another three after I suffered a relapse. Sometimes I felt like my diagnoses were a curse. I had to take intravenous antibiotics and strong anti-malarial medication, and even with those and adjunct treatments, I suffered Herxheimer reactions, meaning I often felt much worse before feeling better. My energy would start to improve and my symptoms would lessen, and I’d have hope that things were heading in the right direction, just as Red Sox fans had year after year when their team did well in the regular season.

But year after year, the Red Sox fell short of their goal. They had to come back the following season and start all over. I had to do the same. Even when I made it all the way to remission, I didn’t fully understand the nature of chronic illness, and got overwhelmed by factors that sent me back to the starting point. It took several seasons for me to find the right cocktail of medications and therapies, and to learn how to take care of myself so that my body would stay strong in spite of its limitations.

Throughout those years, I still had naysayers. There are people who don’t understand the relapsing nature of tick-borne disease and think any case, even one that went undiagnosed for eight years like mine, can be cleared up with three weeks of antibiotics. Those people are wrong.

People who move to Boston today might be similarly ignorant. If they don’t know the history of the Red Sox, they might think their baseball team has always been great. They might think the same of their new football team, too, even though the Patriots were not very good until they got Tom Brady—the doxycycline of football. Success hasn’t come easily for these teams. It doesn’t come easily for most patients of tick-borne diseases, either. Lyme disease and its co-infections are real. They take a lot of work and time to overcome.

We need to have faith that the more we spread Lyme-literacy, the more people will understand this. But even if they don’t, we can still have faith in our Lyme Literate Medical Doctors (LLMDs), and in our bodies, to see us through to victory. If that faith dwindles, we can always watch the Red Sox, who might just make it all the way this year. But even if they don’t, they’ll be back out there next season, giving it their all until triumph is theirs. And like baseball, it is often a team effort engaging one’s LLMDs, true friends and family members.


jennifer crystal

Opinions 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 jennifercrystalwriter@gmail.com

life with lyme

Scheduling Life with Lyme Disease

by Jennifer Crystal

Flexible vs. rigid? How keeping to a schedule can impact one’s life with Lyme disease.

 

In 2007, I suffered a severe relapse of Lyme and two of its tick-borne co-infections Babesia and Ehrlichia. I had been in remission just a few months before I crashed back to ground zero. It took another couple years for medication and adjunct therapies to help me get back on stable ground.

I say “help me” because those therapies could only do so much of the work. The rest was up to me. I had to accept my illnesses and the limitations they imposed on me; this strategy became part of my “fight” against them. I had to make behavioral or lifestyle changes that would help my body heal, rather than just expecting it to do so regardless of how I lived.

One of those changes was creating and sticking to a strict schedule. My sleep doctor taught me that medication and neurofeedback would help my raging insomnia and hallucinogenic nightmares, but I also had to have good sleep hygiene. That meant going to bed and getting up at the exact same time every day. It also meant taking naps at the same time every afternoon. If I pushed my bedtime or nap-time too late, I wouldn’t be able to sleep, and everything would snowball until I was a melted down mess.

People who didn’t understand neurological Lyme disease thought I was too regimented. They laughed as if to say …

Would it really kill you to stay up an extra 15 minutes? Is it really that big a deal if you don’t get a nap today?” The implication being, “Can’t you be a little more flexible?”

Now that I’ve been in remission and steadily getting healthier for over a decade, I can be a little more flexible. Some nights I can push bedtime an extra hour and not pay for it too severely. But back when my health was super-fragile, there was no margin for error.

Even though I have some wiggle room with bedtime now, I do not have the same flexibility with nap time. If I lay down by 1:30 P.M. every afternoon, I get a good, comfortable nap, and wake up refreshed and ready to take on the rest of the day. If I push just half an hour until 2 P.M., everything starts to fall apart. My brain fog rolls in, I get cranky like a toddler, and I become too tired to fall asleep. Then I spend my time in bed anxiously rolling around, not getting the rest I need, and the remainder of the day—and sometimes the next day—is a wash. That half an hour is precious to me, so I’ve had to learn to advocate for it. I’ve had to learn what my limits are, which boundaries I can push and which I cannot. I had to learn to schedule my life—teaching, writing, socializing, accordingly. This discipline is, I’ve learned, the only way for me to control my tick-borne illnesses, rather than allowing them to control me.

The same is true not just for my daily schedule—which includes taking medications at the same times every day, and sticking to a consistent gluten-free, sugar-free diet—but for my weekly and more general schedule, too. When I was recovering from my relapse, I wanted to get better as soon as possible and thus scheduled more therapies and appointments than I could physically handle. I quickly realized that I did not have the energy to go to talk therapy and physical therapy on the same day. Conversely, my brain really needed three neurofeedback sessions a week instead of two. I started parsing out my week: physical therapy on Monday, neurofeedback on Tuesday, talk therapy on Wednesday, neurofeedback on Thursday, and so on. Getting well could not be rushed. It had to be my full-time job.

While I no longer need weekly medical appointments, I am still careful to stick to a schedule that works for my health. I teach classes in the mornings or evenings. I only write in the mornings, and not on days that I’m teaching. I don’t exercise during the week if I know I want to go kayaking or skiing on the weekend. I still go to maintenance integrative manual therapy and neurofeedback appointments every month.

I wish there was a magic schedule formula I could give all Lyme patients. But just as there is no set protocol for treating Lyme and co-infections because no two cases are alike, there is no set way for living your life with these illnesses. You have to learn your own limitations, and be willing to schedule your life within them. You have to learn your own boundaries and be willing to speak up for yourself. You have to learn which of those boundaries you can push and know what the consequences will be if you do so. And most importantly, you have to ignore other people’s opinions about your schedule. No one knows your body and its particular needs better than you do!


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 jennifercrystalwriter@gmail.com

Things I Never Thought I Would Do Before Lyme

by Kerry J. Heckman

On one hand a doctor treating Lyme may recommend antibiotics, and on the other hand, a doctor treating an autoimmune disease may recommend immunosuppressants. It’s very difficult to know which is the right decision, that is,  which doctor to listen to. I just keep following my intuition and hope science will catch up soon.  

It’s been said that if you want something you’ve never had, then you must be willing to do something you’ve never done. In 2014 there was nothing I wanted more than to recover from Lyme, so I knew I would have to do things I’d never done to make it happen. At the time I didn’t know how far outside my comfort zone I would have to go, or even four years later I’d still be pushing those boundaries, but it’s a lesson I’m glad to have learned.

The first thing I never thought I’d do was get an MRI. I know, MRIs are no big deal, right? But because I have claustrophobia it was a prospect I had always dreaded. The thought of being put on a mechanical table and then slowly inserted head first into a small tube was terrifying to me. Now I’ve had five MRIs and counting, and each one gets easier than the last.

There’s a surprising benefit to constantly being forced to do things you never thought you’d do before—it builds your courage. Bravery is a muscle and when you use it, it gets stronger. Each time I came out of an MRI unscathed, it made the next one easier. And so my MRI challenges have had a broader impact on my life.

Here’s a few examples of things I never thought I would do:

I never thought I would stop eating bread.

I suppose I still eat “bread,” but it’s not that fluffy, doughy substance I once loved. I used to have some form of bread with every single meal. I was one of those people who didn’t understand gluten-free diets or the complexities of nutrition and digestion. It’s a challenge for me every day and I’m still not perfect, but the sacrifice is worth it.

I never thought I would take 50+ pills in a day.

I couldn’t even swallow a pill until I got to college and at that point I was taking an ibuprofen about twice a year. I rarely ever took medication. After I was diagnosed with Lyme, I started taking the handfuls of pills and supplements that’ are the norm for all Lyme sufferers. Now I can swallow a pill the size of a quarter— okay, that’s an exaggeration—but I can swallow just about any pill given to me.

I never thought I would get into a hyperbaric oxygen chamber.

A hyperbaric oxygen chamber is similar to an MRI, with one important exception—it’s a completely enclosed tube. This makes it even more intimidating for someone with claustrophobia since you can’t panic and get out at a moment’s notice because the chamber has to depressurize first. I had to train myself, but now I’m able to get this valuable  treatment without worrying.

I never thought I would go against one doctor’s advice to follow another.

There is a link between chronic infections and autoimmune disorders and when you have both you usually have two doctors recommending opposite treatments. On one hand a doctor treating Lyme may recommend antibiotics, and on the other hand, a doctor treating an autoimmune disease may recommend immunosuppressants. It’s very difficult to know which is the right decision, that is,  which doctor to listen to. I just keep following my intuition and hope science will catch up soon.

I never thought I would quit my job.

I was a school social worker for ten years. I was happy doing what I loved and thought I would stay in that job until I retired. I had tenure, a pension, and the stability that most people crave. Then I got sick and didn’t have the energy to meet the demands of the job. It ended up being the best decision I’ve ever made for myself, but it was not in my life’s plan.

I never thought I would move across the country.

After a couple years of backwards priorities, I realized my health had to take precedence over everything. The extreme temperatures of the Midwest were getting to me and I felt like I’d exhausted my medical options there. If I was going to get better, I needed to make a drastic change: I needed to move. Uprooting my life took courage. I would not have been brave enough to do it without first experiencing everything else Lyme and its treatment required of me, starting with that first scary MRI.

This is just a small list of some of the things I’ve done in the past few years in order to live with Lyme disease.  It’s funny, among those suffering this disease I don’t even consider myself one of the brave ones. There are so many things I’ve seen Lyme warriors braver than myself take on and still manage to thrive. For instance, I’ve never had a PICC line or a port. I’ve never traveled to a foreign country to be treated by doctors who speak a different language. But I know I would do so if I felt it was necessary. That’s what Lyme teaches us—we are really braver than we ever thought possible.

If you can get through Lyme treatment, you can get through anything.


kerry heckmanOpinions expressed by contributors are their own.

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

Chronic Illness is a Big Waste of Time

by Kerry Heckman
#MyLymeLife

Every Sunday evening I get out my pill organizer and about 20 bottles of medication and supplements. I set up a station at my table and start dividing pills into little compartments for morning, afternoon, evening and bedtime. The entire process takes about a half an hour and a lot of mental energy. It’s not a big deal, but it’s just one example of the time-consuming tasks that go along with having a chronic illness. Things that we have to do that other people don’t have to think about. Each week I spend time ordering and picking up medication refills, making and attending appointments, and preparing special food from scratch. When you’re ill, taking care of yourself becomes a full-time job and everything is done while fighting through brain fog, pain and chronic fatigue.

Mundane tasks aren’t the only reason chronic illness is a waste of time. A lot of time and attention goes into self-care. It’s important but it still takes essential time out of the day. Every morning I meditate, do a few yoga poses, and use a detoxification technique called dry brushing. Then, in the evening, I spend at least a half an hour in an Epsom salt bath and prepare an essential oil diffuser to run while I sleep. Some Lyme patients sit in an infrared sauna or use an ionic foot bath. It’s great for our health, but it all takes precious time.

A big chunk of our time also goes to researching symptoms and treatments. Because research on Lyme disease and other chronic illnesses is lacking we are forced to do a great deal of learning on our own. This is done by reading books, articles, blogs, and message boards, in addition to communicating with others with similar symptoms. This can often lead to a rabbit hole and eat up hours at a time, especially since a lot of information on the internet won’t be relevant to you. On the whole, however, it’s time well spent, but it can become exhausting.

To top it off, people with Lyme are often forced to sit (or lay in bed) and watch life pass us by. We see our friends on social media hiking in the mountains, playing outside with their kids, or crossing the marathon finish line and think, “That could’ve been me if I hadn’t gotten sick.” Many of us have half-finished college degrees or gaps in our resume from when we weren’t able to work. No matter when Lyme strikes there are always missed milestones and lost years.

Recently, I was talking to my husband about how for the past two years we hadn’t been spending much time outside or taking advantage of all the thousands of things to do in Chicago where we live. It was then I realized that for most of the last two years I was either at work or on the couch. Time passes quickly when there isn’t much diversion. I imagine many other people with chronic illness wonder where the years have gone. We’re all waiting for the day we get better and can go back to doing everything we used to do.

In spite of everything, I have a strong drive not to waste precious time. Perhaps it’s because, like many people with Lyme, I’ve been forced to face my own mortality. I often remind myself I only have one life, no matter what circumstances I’ve found myself in. When I feel disheartened about the wasted years, I try to reframe the way I look at time. Lyme is a season in my life. In some seasons we are meant to be active and productive, but in other seasons we are meant to rest and recuperate. I know this season will eventually pass or at least get better.  I think this quote by TK says it all:

Be easy. Take Your time. You are coming home to yourself.

Maybe it’s not about wasted time. Maybe instead it is all part of a process of slowly becoming who you are meant to be. Some people are transformed by radical shift, but maybe people with Lyme need a softer transition. Like the caterpillar becoming the butterfly, we are slowly preparing to take flight.


kerry heckmanOpinions expressed by contributors are their own.

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

The Pressure of Platitudes: Patients Are Only Human

by Jennifer Crystal

As I wrestled through the darkest years with Lyme disease and its co-infections, there were times when I had to be brave…Now that I am in remission, I try to offer inspiration to other patients through my writing, and I’m grateful to hear when I’ve succeeded.

One of my creative writing students, a cancer survivor, recently wrote about a time when she snapped at a fellow patient. This was while they were both receiving chemotherapy. A man sat down next to her and attempted to make small talk.

Just wanting to be alone, my weary student made a nasty comment, and he left.

You would think she wrote about this exchange years after it happened because she felt bad about whatever she had said. In fact, she wrote about the experience because it illustrates an important point that often can be missed: patients are only human.

Patients of any serious or chronic illness frequently hear, “You are so brave!” or “You’re such an inspiration!” These statements can be true, and can be nice to hear. As I wrestled through the darkest years with Lyme disease and its co-infections, there were times when I had to be brave: when I got my PICC line in, when I was fighting doctors and insurance companies who didn’t believe me, when I underwent emergency gallbladder surgery. Now that I am in remission, I try to offer inspiration to other patients through my writing, and I’m grateful to hear when I’ve succeeded.

But there were also times when I wasn’t brave, too. Those times when I didn’t advocate for myself, times when I didn’t stand up to someone, times when I wanted to give in to the illnesses. There were and are still times when I am not an inspiration after all: times when I’m grouchy, times when I overreact, times when I snap at someone thoughtlessly. Times when I, like my student, am all too human.

No one can be all one thing all the time. Part of being human is being multi-dimensional. Therefore, blanket statements like “You are so brave!” and “You’re such an inspiration!” don’t capture the full patient experience. Especially when given without context—like when you say it to a cancer patient you’ve just met and know nothing about him or her. In this context such compliments seem disingenuous.

In her book Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, Laurie Edwards writes, “I fear it’s too easy to lump together platitudes about those who are sick—that we are somehow stronger or better people for having endured pain or extreme obstacles; that because we’re sick, we’re martyrs and capable of serenely accepting challenges, setbacks and procedures without complaint.”[1]

Sometimes we are strong and serene and capable of enduring more than we ever imagined. But usually we withstand obstacles simply because we have no choice.

“Very often, illness doesn’t allow the luxury of courage; pragmatism and practicality dictate the extent of our fearlessness,” writes Edwards. “I take the medications whose side effects I hate because that’s all there is left to do. There is very little room for interpretation, inspiration, or intrepidness in these situations.” As a patient who Edwards interviewed put it, chronic illness makes us better sufferers, not better people.1

Platitudes can also put unintentional pressure on patients to live up to super-human expectations. They may think they have to put on a good face even when they feel awful, or that they have to be brave even when they are scared. Patients wrestle with how they “should” feel or look, especially when they hear that other well-intentioned but off-putting statement, “But you don’t look sick!”

Beyond negating how sick someone is feeling, such a  comment also makes them think they shouldn’t try to look their best when out in public so that people can see how sick they truly are. I can’t imagine the mixed messages model Bella Hadid must contend with, since it’s her job to look beautiful but also to show that she is suffering from Lyme.

So what is a healthy person to say to someone with a chronic illness? My first piece of advice is “ask, don’t tell.” Instead of telling the person what they are, ask them how they feel, both physically and emotionally. Are they feeling brave? Scared? Cranky? Let them know that they don’t have to put on an act for you.

Second, be honest with what you feel and see. If a patient has done something that you recognize to be brave or inspirational, by all means, let them know, but be specific. Say something like, “I think you were brave to look for a different doctor” or “That quote you posted about chronic illness really inspired me to better appreciate my good health.” This way, the patient knows your compliment is genuine. You’ll feel better giving it, and they’ll feel better receiving it.

Finally, remember that the best way to help someone is by empathy. Let your friend or family member know that instead of telling them what to do, how to feel, or what they are, you are simply there to listen and to be with them. Chronic illness strips patients of so much, but it brings to the forefront their humanness. Let the patient know that you, too, are only human, and that both of you walk that journey together.

[1] Edwards, Laurie. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties. New York: Walker and Company, 2008 (41, 42)


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 jennifercrystalwriter@gmail.com

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. 

A Letter to My Sick Self

by Bonnie van Geffen
#MyLymeLife

One Lyme Warrior’s Letter to Herself

 

Dear Me, Dear Humiliated Me,

Please don’t ever call your body weak again. It had to fight so much for so long, that it’s one of the strongest you’ll ever meet. It had to carry so much and it fought so hard for you. Never forget that progress is a slow process.

Please don’t ever feel guilty again of not being the perfect friend, girlfriend, daughter or employee. You are not your disease. You’ve tried more than everything to keep up with life, but in the end, you lost. You fought an incredible battle. But a setback is just a set-up for a comeback. And one day, you will be winning again. You’ll proudly show your scars and scream “I’ve survived”.

Please don’t ever feel ashamed again, for not remembering things and asking questions when you should already know the answers. Memory loss is part of the disease, and some day your brain will function properly again. Remember that the people who love you, don’t blame you. So why blame yourself?

Don’t compare yourself to the girls who post sunny holiday pictures with the cutest outfits. When these girls wore sunny outfits, dresses, daisy dukes and high heels, you wore sweatpants 7 days a week. And you know what? That is okay. Really, it is. Your time will come too, and then you’ll feel confident and maybe even sexy. And you’ll buy all the dresses you can dream of. And the shoes too, of course.

Don’t accuse yourself of being difficult to love. Don’t you dare tell yourself that ever again. There is so much to love about you. When you feel hate for yourself, you are actually hating Lyme disease. But there is more to you than that. You are loyal, giving, generous and have such a big heart. Even with this debilitating disease and unreal medical bills, you still support people you love and give a lot to your family. And almost never ask for anything. Your soul is pure and your intentions are always good. Don’t blame yourself for the negative thoughts, but learn to understand that they are a part of this process. There will be a day when you will tell your mind to shut up when the bad thoughts will come again. You will beat this negativity. Yes, you will.

Don’t hate yourself. Stop hating your body. Your legs carried you through the hardest parts of your life. Your arms are strong. Yet they are also soft and can be used to cuddle and hold the ones you love. When you’re finally able to workout again, it will feel like the biggest victory you’ll ever know. I promise you that if you learn to appreciate yourself, your body will glow again. The scars will be evidence that you have won the fight. Celebrate the future and be thankful.

Please forgive your former friends for not being able to understand what it really means to be sick. They simply cannot empathize with you, and their lack of trying doesn’t mean they are bad people. It just means that life got in the way. Take it as a lesson learned. Now you know who really has your back. If you dare to let go, life will reward you with new people who will see the good in you when you feel lost or disoriented.

Please get rid of the idea that you can never thank your loved ones and friends enough for putting up with you. It’s not necessary to give them money or gifts. Remember that they support you because they choose to. Cherish them, and pay them back with love and unconditional friendship, because that is more than enough.

This is not your fault. Lyme disease is not your fault. But ten years ago, this stupid tick bite happened to you. Since then you’ve lost control over your body and life. If you blame yourself, please remember the tick bite and try to blame the tick. Quit being impatient, pat yourself on the back and remember how far you have come. You can do this. Hell yes, you can.


Opinions expressed by contributors are their own.

Bonnie van Geffen is a 29-year-old Lyme warrior from The Netherlands. She has experienced symptoms for many years but was officially diagnosed with Lyme disease a few years ago. After her initial treatment, Bonnie’s symptoms have now returned.

A Lymie’s View from 39

by Jennifer Crystal

Birthdays and milestones can have a different meaning for Lymies and people with a chronic illness.

 

When I was six or seven years old, I asked a great-aunt how old she was. Winking at my grandmother, she replied, “I’m 39.” I understood 39 to be the last good year, the last decent age before it all started to go downhill; the year by which so many life goals are supposed to have been achieved. I didn’t worry too much, though, because 39 was always a long way off. By then I would be married, have a family, be settled in my career and stable in my life.

That was before I lost a decade to illness.

I turned 39 last month and it looks a lot different than I’d imagined, which is not to say it looks bad. My tick-borne illnesses have been in remission for years. I am writing and teaching, skiing and socializing. I’m living on my own. The view from 39 is certainly better than it was at 29, when I was in the midst of a relapse, back at my parents’ house, pulled away from my independent life for a second time.

That year I wrote in my journal, “I’m turning 29, and what do I have to show for it?” It was a sentiment I felt many times throughout the harrowing years of illness. Unable to work or even leave the house except for doctor’s appointments and trips to the pharmacy, I questioned my self-worth. Birthdays didn’t feel like celebrations; they were reminders of all that I wasn’t doing, all that I couldn’t do, all that I might never do. They were reminders of another year passing by while I struggled to survive.

What I didn’t understand then is that fighting tick-borne illness is an achievement of its own. Getting well was my full-time job, and I was working overtime. Though I often felt awful, I made strides. I was going to neurofeedback, integrative manual therapy and talk therapy appointments. I was taking all of my medications and supplements. Twice a day, I infused intravenous antibiotics and cleaned my own PICC line. I was working through the physical, mental, emotional and spiritual upheaval of being sidelined by illness, and that was certainly worthy of celebration.

I did not yet understand that success is not defined by a career, money or status. Of course, I wanted all of those things, and still think it’s important to support yourself through a job you love. That’s something I’ve worked towards in my thirties. But the fact that it wasn’t possible during the lowest point of illness did not mean that I have nothing to show for those years. I still had my character. I still had my values. I still had my sense of humor. And those qualities deserved to be celebrated.

Still, 39 is not what I expected it to be. I’m not married. I don’t have a family of my own. I am working hard but am not fully settled or stable in my career. I’m grateful for how far I’ve come, but I still want all those other things, and I’d be lying if I said I don’t feel some angst about not having them by this age. Most of my contemporaries are married with kids and mortgages and careers that allow for nice vacations. I love those friends and feel connected to them, but I’m not on the same track as them. My major detour puts me more on track with friends who are 29, because they are at the same point in their careers and personal lives as I am.

But the fact is, I’m not 29. As much as I can appreciate all that I went through in my late twenties and early thirties, I can’t get those years back. My body is aging. When I went skiing this year, I fell on some ice and remarked, “I don’t remember it hurting like this when I was younger. I would just get up and keep going.” I kept going this year, too, but spent the next day icing my sore spots and taking ibuprofen. I’m getting wrinkles around my eyes. Once in a while I pluck a silver hair from my head. My hands are getting veiny the way my mom’s and grandmother’s did at my age. I can’t blame those signs of aging on Lyme disease; I’m simply getting older.

The reality is that my biological clock is ticking. That scares me. But I’m also still holding out hope. During years of illness when I thought I might spend the rest of my life in bed, I nurtured a glimmer of faith, and it worked. I got better. Maybe not as fast as I wanted to, but it did happen. So I have to have faith that I will achieve all my other goals, too, even if they’re not happening in the time frame I’d always imagined.

If my great-aunt and grandmother were alive today, I might wink at them and say, “Maybe by the time I’m 40.”


Opinions 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 jennifercrystalwriter@gmail.com

Fighting ‘Fight or Flight’

by Jennifer Crystal

Does stress impact your Lyme symptoms? How do you react?

 

For a few days last week, I had trouble napping. This is usually a result of being physically and neurologically overtaxed, making me too tired to sleep. Frustrated and cranky, I got up after a couple hours and moved to the couch. I opened the windows, let the fight offspring air tickle my feet, and looked out at the budding trees. I put on some quiet music and lit a scented candle.

Sounds like a relaxing scene, right?

Instead of relaxation, I felt a familiar and unpleasant sensation creeping through my body. My breathing shortened. My legs felt jumpy. My thoughts raced. My heart rate quickened and my mouth grew dry. My whole body felt suddenly restless, even though I was so tired. As my Integrative Manual Therapist later confirmed, my limbic system had gone into “fight or flight” mode, defined by dictionary.com as “the response of the sympathetic nervous system to a stressful event, preparing the body to fight or flee, associated with the adrenal secretion of epinephrine and characterized by increased heart rate, increased blood flow to the brain and muscles, raised sugar levels, sweaty palms and soles, dilated pupils, and erect hairs.”

If I was lying on my couch relaxing, what was the “stressful event” to which I was reacting? For me, it was two-fold. First, my neurological system was stressed because it hadn’t gotten the sleep it needed.  Inadequate sleep is extremely stressful to the body. Whether I was lying on the couch or in a hammock by the beach, my overtired brain was bound to cause a fight or flight reaction.

Second, lying on the couch when I was so tired reminded me of all the times I’d been sacked out during the worst periods of my health journey, especially during my 2007 relapse. During those times I was terrified I would never get better, and the fear often manifested in a fight-or-flight response. While I wasn’t consciously thinking of that relapse after my recent napless afternoons, my subconscious must have. Remembering previous trauma, it immediately put my body into the same reaction it did at the time, in the same way that post-traumatic stress disorder gives victims flashbacks. The physiological basis for my fight or flight reaction was neurological Lyme disease, but it was exacerbated by lack of sleep and a traumatic memory.

A fight or flight reaction sounds complex, but is actually quite primitive. As Peter A. Levine explains in Waking the Tiger: Healing Trauma, “If the situation calls for aggression, a threatened creature will fight. If the threatened animal is likely to lose the fight, it will run if it can. These choices aren’t thought out; they are instinctually orchestrated by the reptilian and limbic brains.”

The Lyme patient, feeling threatened by the illness and all the neurological and physiological responses to it, has this same instinctual response. And while this makes perfect sense, it can be extremely frustrating to deal with, especially when all we really need is rest. With no energy to fight or stamina to run, we are stuck in park on our couches while our nervous systems race in overdrive.

So what’s a Lymie to do? Here are some tips that have helped me cope:

  1. Remind yourself that this is normal. Remember that such a response is instinctual and out of your control. You can, however, control your reaction to it. Simply remembering that this is your body’s natural way of protecting you may help to alleviate panic, which will help the response to pass quicker.
  1. Keep still. When the choices are fight or flight, your instinct is often to get up and run away. That’s only going to make things worse. It certainly can help to move to another spot (a different couch or chair, or a comfortable recliner), but don’t force your body to go for a walk or move in ways it isn’t capable of in an effort to “escape” the situation.
  1. Concentrate on your breathing. There are lots of great techniques to help you steady your breathing. One that works well for me is to breathe in through my mouth and imagine that breath filling up my belly; hold that breath in my belly for a count of three; then slowly release it back out through my nose for a count of five. Do this five to ten times.
  1. Hydrate and eat. Drinking water and eating a healthy snack can help stabilize your blood sugar, and your overall system. I also like to have some calming tea, such as Celestial Seasonings Sleepytime or Yogi Calming.
  1. Use neurofascial processing. Developed by Sharon Giammatteo, Ph.D., neurofascial processing uses light touch to help the body heal. In her book Body Wisdom: Light Touch For Optimal Help, Giammatteo states, “When you are frightened, severely stressed, or weakened due to illness or injury, your limbic system [within the cerebral cortex of the brain] will respond.” One simple way to calm your limbic system is to hold one hand across your forehead, above the bridge of the nose, and one hand over your kidneys, behind your back. You can do this while you’re lying down. Hold the position for at least 15 minutes. It may sound kooky, but I promise you, it helps! Worst case, your arm will fall asleep—and maybe even you will, too!
  1. Do some light reading. When I’m overtired, I don’t have the neurological capacity to read or watch TV, but sometimes skimming something light—even though I’d rather be sleeping—helps my brain and body relax.
  1. Call a friend. Part of the problem of fight-or-flight for Lymies is that we’re often alone when it happens, and that can be scary. Call or text a friend to help talk you through it, or to tell you a funny story.

I tried to follow my own advice last week when I went into fight-or-flight, and I am happy to report that within a few days, I was napping normally again!

Next week I will be answering questions from readers. Do you have a question about Lyme? Email me at jennifercrystalwriter@gmail.com.


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 jennifercrystalwriter@gmail.com

 

 

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