Prioritizing

A few weeks ago, I ran across a quote that says “Never prioritize people who only view you as an option”. This struck me to the core because this is a problem I seem to have run into frequently this year. I also think it’s a problem that most people dealing with a chronic illness will face at some point or another, because eventually you realize that priotiysome of the friends or family members you are prioritizing are not supportive of, or helpful in, your journey to health.

I love writing about Lyme because in so many ways, the problems it brings parallel normal life problems that everyone deals with, magnified in the face of a chronic illness. Ironically, I find myself relearning lessons that I dealt with when I was very sick, except that now they center around circumstances that aren’t related to my health.

When I saw this quote, it was about two weeks after a break up. I realized that I had put more energy into and placed a higher priority on the relationship, and that wasn’t fair. While I was sick, I learned how to invest my energy carefully, into those who I wanted to spend time with, and who were equally active in our friendship. But somehow, I failed to take that lesson with me into real life.

The people I love and am closest to are the most important people in my life. I place a higher priority on these people than on anyone else, and I never say things that I don’t mean. Meaning, if I say “I’ll be there” or “I love you” or “There’s nothing you can do that will ever make me leave” then I mean those. Yet, there are people in my life, who have been there for years, who are not there for me as irrevocably as I am for them, and these relationships drain energy. This doesn’t mean they have to end, but it does mean that they should no longer be prioritized.

This is difficult. I’ve always believed that if you fight hard enough at anything, you can win. That mentality got me healthy. It’s also allowed me to do a lot of other things. But one thing you can’t always win, no matter how hard you try, is other people. You can prioritize someone, but if they refuse to do the work back, well, actions speak louder than words.

When you’re sick, it’s easy to prioritize. You only have so many spoons each day. It may not be easy to cut people out of your life if you realize their presence is harming you more than it’s helping you, but it is easier. I intentionally ended some friendships when I was very sick because those people made me stressed, unhappy, and were not supportive of me, while I was expected to be supportive of them. This is harder to remember when you’re healthy and have more energy to invest in people-whether you should or not.

In some ways, being chronically ill makes some things easier. It offers a sense of perspective that, speaking from personal experience, can be easy to lose sight of once you’re healthy. With Lyme, you never know what tomorrow, or even today, will bring. In such a state of uncertainty, your limitations become glaringly obvious, and it becomes much easier to really notice which things or people in your life are helpful and which are harmful. You have to take advantage of the times that you feel somewhat normal and spend that time with the people who really matter. It’s easy to realize which relationships in your life are not healthy when your life is all about being as healthy as possible.

This is a perspective that people may never have. Without some kind of cataclysmic push, like an illness, it seems like people are more likely to avoid purging their lives of toxic people. They’ll keep around that friend just because they’ve known them forever, even if that relationship is unhealthy. Often, there’s the fear about what will happen if you let a person go from your life. If you’ve been friends forever, even if it’s not an equal friendship, it’s still scary to imagine not having that person around anymore. Often an illness, while unpleasant, is helpful in providing a perspective change, and the push needed to make one’s life healthier overall.

Obviously, having a chronic illness is not any fun, but I continue to find ways that the lessons I learned from being sick still apply to my life. This lesson about prioritizing is especially powerful. I wrote a post awhile back about the reasons I am thankful I got Lyme and the lessons it taught me. Being sick is no walk in the park, but the lessons it brings are gifts (or at least that’s how I prefer to view them). And thankfully, if you don’t learn them the first time around, there will always be more chances to.

The Power of Words

pen-and-notepadAs Albus Dumbledore says in Harry Potter: “Words, in my not so humble opinion, are our most inexhaustible form of magic. Capable of both inflicting injury, and remedying it.”

Words are the most powerful tool we have in our lives. Words allow us to communicate, words allow us to create, to record, to learn and to voice our opinions. Words have the power to change someone’s mind, to create positive feelings and to cause conflict and anger. Yet, we misuse words all the time. We abuse the power of words, often without fully understanding the consequences of doing so. We allow ourselves to get caught in our own words, to let our words dictate our lives without even realizing it.

The right words can literally change how you view and deal with an issue. In the example of Lyme disease, the words that you think and say to yourself and others everyday are instrumental in how you deal with and recover from this illness. If you are constantly asking yourself “Why am I not getting better?” then you are reinforcing in your mind the idea that you cannot get better. Our minds play a huge role in helping our bodies recover. Similar to how your brain remembers the memories you think about the often the most easily, the brain also remembers and embodies the thoughts you have and entertain the most frequently.

Words are powerful not only in our intrapersonal communication, but also in how we communicate with other people. Have you ever been so mad that you said something hurtful before you could really think about it? After you’ve calmed down, you realize that you could have phrased your anger in a less inflammatory and mean way. In the same type of way, the words that you use to describe your disease are important to think carefully about. If you’re constantly complaining to your family, friends or doctor that “I am never going to get healthy” or “My body is breaking down and I can’t beat this” then you are setting yourself up to hold onto these beliefs which will impede your ability to become healthy. You are using language that is mean towards your body, in the sense that it belittles its healing process and all the hard work being put into healing. These words are literally inflammatory because they act as an invitation to your brain to continue being ill. And at times that you feel calmer, you realize these statements are not actually true.

I’m guilty of misusing words all the time. I have asked, on more than one occasion “Why does it seem like there’s always another health issue? Am I ever going to be completely done with this ‘Lyme and friends’ health nightmare?”. Recently, I have had a flare from untreated, non-Lyme infections that we didn’t know to treat during my original treatment. And I spent several days being really negative about it. I felt like I was spiraling back down into the hell of being sick. Finally I took my own advice and started paying attention to the words I use to describe myself. And I’m feeling more positive and healthy.

Our words have the power to create happiness-is there a happier feeling than the first time someone tells you they love you?-the power to create sadness-terrible news that brings tears to your eyes-the power to create anger-the irrational moment when words are used to lash out, and spark, creating a simmering anger-the power to apologize-“I’m sorry, please forgive me” some of the most vulnerable words you can say, and only hope they’re accepted-the power to excite, to tell a story, to create connections, to do so many things; why can’t words also have the power to heal? The right words: “I will beat this” “I am healthy” “My body is no longer a safe place for this illness to hide and it’s time for it to leave”, these words are just as powerful as “I’m sorry”, “I love you”, and of course, the “magic words”: “Please” and “Thank You”.

A book I find helpful that reinforces the idea that our words are intensely powerful and have the ability to change your mindset and your health, is called Afformations: http://amzn.to/2gDFWRU. I highly recommend it to start your mental healing and learn the power of your words.

 

Lyme Opens the Door…for Everything Else

What is toxoplasmosis? It’s a disease caused by a parasite called Toxoplasma gondii; a disease that usually has no symptoms because a person with a healthy immune system can host the parasite without having any adverse side effects. How do you get toxoplasmosis? Usually by eating under-cooked meat or otherwise contaminated food or water, or from a cat, whose feces contain toxoplasma. What are the major symptoms? Headache, body and muscle aches and pains, fever, sore throat and swollen lymph nodes. Why am I writing about this? Because it’s yet another of the many infections that can be found in the body of a person who has or who has had Lyme disease.

Yesterday I had a magnet therapy appointment, which is a treatment I used and loved this summer to get rid of Lyme and co-infections. However, the creator of this protocol, Joan Randall, whose website you can visit, recently released a new, advanced protocol, treating for more secondary infections that are often found in Lyme patients. I haven’t been feeling great the last few weeks. I’ve had a lot of muscle and body aches, fatigue, a sore throat, and on and off fevers. I decided it would be a good idea to get checked out, and I’m glad I did because I have some of these secondary advanced infections.

The first one I’m being treated for is toxoplasmosis. The way that magnet therapy works is that the practitioner places magnet pairs on different parts of your body that correspond to the particular infection you’re treating that day, and leaves these magnets on for as long as the body wants them, using kinesiology to figure out this length of time. The magnets help the body clear the infection from itself, and after the session, whatever infection you treated is dead. The die-off herx reaction from this usually lasts for a couple days to about a week, but by the end, an infection, virus, parasite, whichever you were treating, is gone.

This therapy is incredible. It’s effective, it works with your body instead of against it, and this protocol catches infections that I had never heard any of my previous Lyme doctors even mention, but which will continue to cause symptoms until treated. I highly doubt I would have ever figured out that I have toxoplasmosis if I had gone back to my LLMD when these symptoms flared again. More likely, I would have ended back up on antibiotics, back in the vicious cycle of trying to figure out what was wrong. More LLMDs are recommending that their patients try magnet therapy, which makes me hopeful that even more people’s lives will be saved with this option.

I’m still borrelia, babesia, bartonella, and all the other primary co-infections free, partially thanks to my treatment with magnet therapy, and partially due to my work with EFT, which you can read about in a previous blog post. I truly believe that magnet therapy is a major key to clearing the body of all the many infections that Lyme invites in. As I’m sure many of you know, Lyme is not responsible for many of the symptoms that all Lymies experience. In fact, it’s all the other infections that Lyme invites in that cause these symptoms. Lyme is the least picky doorman in the world, letting anybody in, with or without an invitation. This protocol picks these uninvited doormaninfections out, one by one, leaving you healthy. My advice? Go try it!

 

Is it worth it?

Scrolling through Instagram, I was feeling stuck trying to think about something to write about. I was so wrapped up in my own problems that I couldn’t distance myself enough to think about anything else. And then I came across a picture that asked “Is it worth it?”, specifically about Lyme treatment. Wow, I have so much to say about this topic! Thank you to Instagram and the ideas it provides.

Is it worth it? The only answer is yes. Every fight, every new treatment, every failed attempt, every breakdown because you cannot possibly take it ANYMORE is worth it. But why is it worth it? It’s worth it because there are only two choices: to fight or to sit back and let the illness or pain or overwhelm win. It’s worth it because you have another purpose on earth besides being sick or lost or hopeless and you have to fight so you can do it. It’s worth it because there are people who love you and are rooting for you and they need you to believe it’s worth it just as strongly as they do. It’s worth it because the fight is winnable. Some days it doesn’t feel like that, and those are the days you end up asking if it’s worth it. On those days you must remind yourself that yes, it is worth it, and yes you will beat it.

No matter what Lyme treatment you’re doing, no matter how long you have been working on getting healthy, no matter how broken-hearted you sometimes may feel, remember that it is always worth it.

The other side, being healthy, is worth every single moment of despair, every mental breakdown, every crying, screaming, painful day when you think it might not be worth all this pain. I constantly wondered if it was worth it. How do you know what you’re even fighting for after years of being sick? No one remembers what healthy feels like. Is it as good as it sounds? Are the side effects of antibiotics worth this unimaginable goal of health? Is all the time, money and energy spent worth it? It is so easy to get caught up in the story of being sick, in the despair of not feeling well, and in the fear that it’s never going to end. It’s so easy to wonder, am I doing the right treatment? Am I wasting my time?

Even if this treatment isn’t the one that cures it, every treatment helps push you further along the road to recovery. Every new lesson, every new symptom, every herx, teaches you something more about yourself. It teaches you new ways to survive. It teaches you to appreciate the fight that your body is going through every day. And it teaches you to appreciate that your body is putting up a hell of a fight against a hellish disease. That’s amazing! That’s something to celebrate. And it’s one more reason to continue to fight. That’s why it’s worth it. 

And health? The feeling of waking up in the morning free of pain, symptoms and limitations? It seems intangible and unreachable right now, but it’s worth more than anything in the world. This fight is worth the pain for a reward as great as health.

This applies to everything in life. We all wonder if we make the right choices. We wonder, are the things that are difficult worth the time and energy they demand? Is it worth it to fight for the things that we really want, even when they sometimes seem like they are not working? How do you define what is worth it? The answer is a little more difficult to figure out. But, if the hardest things teach us the most, and if they often lead to the best things, then it’s safe to say there’s got to be something in them we can learn.

So, if you care about something, like being healthy? Then the fight is always worth it. 

Is being sick comfortable?

Humans in general are not fans of change. Change is disruptive. It affects how we do things, how we see things, and how we react to things. Change is hard. Without a doubt, everyone would agree that it would be easier to stay in the same place, doing the same things, for your entire life. Probably boring, unfulfilling and stagnant as well, but easier. Because even when change is good, even when it’s amazing, it’s still more difficult than leaving things the way they are.

Lyme disease is often a long term, chronic illness. It sticks with you for years, potentially decades. Lyme is not fun, and it’s not something that anyone actually wants to have for the rest of their life. But is being sick something that we get comfortable in? Does it become easier to let ourselves stay sick, to do treatments and all of the right things but not quite let go of the need to have an illness because it’s scary to imagine being healthy? What will you do with all of the time you no longer have to spend on being sick? What about all the money that will no longer have to go towards medicines and treatments? How will you define yourself if you are no longer sick? Especially if you’ve been sick for years, how do you figure out how to live your life without it?

It’s scary.

It’s also exciting. The joy of being able to do anything without an illness holding you back has got to be one of the most intoxicating feelings in the world. So then why is it so scary? I’ve been trying to figure this out. I do not miss being sick. I had a little reminder of how horrible it is last week when I got gluten-ed and was very sick, feeling almost Lyme-like, for several days. And I don’t want that back, ever. But I think that it’s a comfortable place to be. Not literally, because when I was sick with Lyme I was in excruciating pain plus incredible nausea and more every day. So it’s not actually comfortable physically, but maybe, in a weird way, mentally it’s comfortable. You know exactly what your limits are. You know what will push you over the edge into feeling really bad, and you know that there are certain things you just cannot do, which also gives you a really good excuse to not go to things you don’t want to do-I know I can’t be the only one who used Lyme to get out of doing things sometimes.

When you lose the sickness, everything is limitless. I still haven’t figured out my limits. I know I must have them, but I don’t know how hard I can push or how far I can go before I run into them. Will a night of poor sleep mean that I need to cut back my day or will I be okay if I push? Can my body handle two workouts a day? How big of a workload can I accept before I get stressed, overwhelmed, and have to let something go? How do I figure out what my limits are now? These and many more questions are constantly on my mind, as I try and figure out this uncomfortable new existence. And it’s been three months of health. Three wonderful, limitless months, but not yet completely comfortable.

Illness is a pattern. It’s not a very productive pattern, and it’s not a fun pattern. But it’s a pattern that we get sucked into, because the only way to deal with a chronic illness is by creating patterns to make it bearable. Patterns are hard to break, which is why I believe that it’s easy to get sucked into the mindset that it’s just easier to stay sick because you know what to expect. I personally know people like this, who have gotten so ingrained in their narrative of being sick that there is no discernible separation between the illness and the person anymore. And they seem comfortable in this pattern of sickness instead of fighting it. I also have met people who are doing everything they can to be healthy again, but these people can still have a pattern of being sick that makes it seem easier sometimes to just stay sick. This pattern is not necessarily a conscious choice. It may instead be a defense mechanism that our brains create to protect us from the sadness and overwhelm that often accompanies illness. But it is present.

So, is illness comfortable?

 

The Worst of the Worst

All throughout my illness, I spent a lot of time and energy refusing to be sick. I went to college, I exercised intensely, I tried to continue competing on my school’s cross country and track teams. In short, I lived like a normal college student.

And then that blew up in my face. About a year ago, I was going full steam ahead, working hard at school, running and lifting all the time, and religiously taking my medicine and talking to my doctor to figure out new treatments to try. I was hiding that I was not sleeping a lot, steadily becoming more depressed, getting sicker and drinking heavily. In short, I was doing a pretty great job of pretending that every thing was going great when in reality, I was as far from okay as I’ve ever been in my life. I was stuck in a major that I was quickly realizing I hated, I woke up most mornings feeling like a load of trucks had run over me, and I was making the classic mistake of trying to drown these problems, specifically my illness, with alcohol. The only thing in my life that made me feel good was running, but that was a double edged sword because while mentally, running helped, physically, it sapped energy from my body that I desperately needed.

The night that this all blew up in my face I don’t actually remember, because I was black-out drunk. What I do remember is waking up in the morning and feeling a sense of dread, and knowing that I had to face my problems and stop pretending like everything was okay. I felt even worse than normal, and that hangover lasted for nearly a week. I called my dad and told him more or less what I’m writing here, which was my first step towards accepting that I needed to figure this out. I was terrified. I had had several mornings where I had woken up and vowed to not drink anymore, only to break that vow a few days later. I was terrified that I was ruining my liver through my combination of heavy antibiotic use and heavy alcohol use. I was panicking because I couldn’t stop. I was angry because I was so sick and I was only making myself sicker. I felt trapped and despondent because I was miserable in my classes. And I was pissed off because I was sick and school was too overwhelming, and my typical college student solution, alcohol, was too much for my already overworked and fragile body to cope with.

A month later, I was on winter break. I spent this entire break doing two things: one, trying to find any possible excuse to not go back to school in the spring, and two, trying to get myself healthy enough so that I could run track if I did have to go back. I ended up going back, but the first weekend I called my parents and told them I wanted to transfer closer to home. School got busy, this idea fell to the wayside, I quit track because I was too sick and then I came home for spring break. I was very sick, so I spent most of my spring break in bed, trying to get myself feeling well enough to finish the rest of the semester. When I wasn’t doing that, I was in doctor’s offices, hearing more discouraging news about the Lyme and treatment options, and finding out that I was going to have to get surgery for a large cyst on one of my ovaries. I felt beaten down by my illness. And I was terrified. I felt like I’d been fighting forever and I just kept having more issues crop up.

At the end of this week, I was on a plane flying from Boston to Dallas to go back to school, sitting next to an adorable little boy. At one of my doctor’s appointments, my doctor had told me that depending on what they saw when they did surgery, they might have to remove my affected ovary, something that wouldn’t make it impossible to have children but would effectively cut my chances in half. I was sitting on this plane with this little boy sleeping on my shoulder, and I started wondering, What if I can’t have kids? How much longer are these health problems going to run my life? What am I doing wrong that is keeping me sick? Why can’t I kick this? and other such questions. As I was having this mental conversation with myself, I started panicking and had a major panic attack, right there at thirty thousand feet in the air with a

every-storm-runs-out-of-rain

Thanks to quotesaddict.com for the picture!

little kid asleep on my shoulder, who, strangely, did not wake up. But it woke me up because I never have panic attacks. I landed in Dallas and immediately called my parents and told them I’d finish the semester but then I was coming home and never going back to school in Texas. I had spent too much time trying to pretend I was healthy enough to be there, but all the evidence kept pointing to it being too much. I was done. I was ready to tackle Lyme on a more even playing field.

And so I came home. I’ve already written a lot about what I did this summer, and how it eventually led to me becoming fully healthy. So why this post? I don’t really know. I sat down intending to write something completely different, but this is what ended up coming out. For me, reliving the absolute hell of the past year has reminded me of one thing: the fact that it really all does get better. A year ago, I would never have really believed I’d be healthy right now. I am consistently running and feeling good. I no longer drink very much, but I can drink without being consumed by it. I’m enjoying school more than I have in years. Despite what I wrote about in this post, I think I did an okay job of refusing to be controlled by Lyme. These times were the worst of the worst. I always tried to remind myself that it would get better. I didn’t stop my life or throw away my goals. But I think the best thing I ever did was finally to admit that it was too much for me to handle on my own. Being devastatingly sick 2000 miles away from my parents was too hard. And by admitting that, I finally allowed myself to truly accept my illness and beat it.

So maybe my message here is acceptance. Listen to your body. Don’t fight it for as long as I did. Don’t try to ignore it or drown your feelings. Or maybe my message is whatever seems like it works the most for you, the reader. This story is one I hardly ever share, but I think it was a crucial part of my journey. Maybe the hardest part of Lyme is accepting the limitations it brings. I ran away from them and didn’t accept them until I was pushed to the point where I had no other choice. But I learned a lot about myself. And I wouldn’t be here, as I am, if I hadn’t made those mistakes. But I can gladly say that the scared part of me no longer rules my life. She pushed me to get where I am now, and that part of me reminds me of what I’ve overcome, but it’s no longer in control. 

A Gluten-free Life

I have celiac disease, something I have written about before. Recently, I learned something new about celiac and how gluten affects those who cannot digest it. I learned that celiacs can have trouble, not only with eating gluten, but also with being around it. I figured this out after I started working at a bakery/cafe in August in the town where I go to college. The job involves making a lot of sandwiches and working with bread every shift, but I figured that as long as I wasn’t eating the bread I would be fine. This had always worked for me in the past when I was exposed to gluten around the members of my family who are not gluten free.

However, when I started my job, I immediately started feeling off. I noticed after my very first day that my throat was sore. The second or third day I realized I was feeling depressed again and started taking the anti-depression medicine that I had stopped. Then I noticed that my stomach was feeling off and that I woke up every morning sick to my stomach. Then I noticed that my skin was getting drier and breaking out more. And finally I noticed that I just didn’t feel well–I was tired, I was feeling lethargic and slow and my muscles hurt.

bread

Bread: how I wish I could eat you

It took me an embarrassingly long time to connect my symptoms to celiac, but once I did everything made sense. I did a lot of research, and I figured out that for celiacs, being in an environment where they are breathing in flour can have the same effect as eating gluten. I was working a lot of morning shifts, when all of the baking is done, so I tried working in the afternoons to see how that made me feel. I still noticed that I felt a lot worse following each shift, and that when I worked a longer shift I would leave work with a scratchy voice because the gluten makes my throat so sore.

Because of all of the gluten-caused symptoms, yesterday, Saturday, was my last official day working there. I’m still going to pick up a few shifts to cover for people until I find another job, but I’m hoping that this week I notice a huge improvement in how I feel after I’ve been removed from that environment for a few days. I haven’t resented my inability to digest gluten for years, because I’ve gotten so used to it that it hasn’t seemed like a big deal,plus gluten free food is really delicious and much easier to find now than it was several years ago, but I loved that job and I am resenting my body a bit for reacting so strongly to being in an gluten-y environment.

I’ve written a lot about how eating certain foods makes me feel, so now here’s a whole new dimension! Even being around certain foods makes me feel bad. That boggles my mind slightly, but also proves to me how much control the food we eat, or even interact with, has over how we feel. Now there’s some major motivation to pay attention to what I’m eating, and spending time around.

Making invisible illnesses visible

I was working on an assignment for school this weekend where I was supposed to analyze the different types of stories that are not covered in the news, and why these stories are excluded. All Lyme patients know that Lyme disease, a debilitating disease, is commonly excluded from all forms of news. Why? Because it’s invisible.

This past week was invisible illness week. This one week is dedicated to trying to draw attention to and make visible all the illnesses that are ignored and invisible. But the truth is, one week is not enough. Invisible illnesses need to be highlighted and talked about every single day until they are no longer invisible.

I was reading through some newspapers for the assignment I mentioned above, and I noticed several articles about people battling cancer and communities gathering around them in support and other such heart warming tales. While these stories make me happy for the people who receive that kind of support from their community and from the general public, it also makes me sad for all of the Lyme patients (and other invisibly sick people) who never get to experience that. Lyme is as draining of an illness as cancer, and it is just as hard to beat. But it is almost never mentioned, not even in local papers in New Hampshire, where I’m from, and where Lyme is widespread.

What makes an illness invisible? Why are some illnesses so routinely stigmatized and ignored? I don’t have a satisfying answer, but the root of the problem lies in the medical community, the insurance companies who find Lyme, for example, to be more profitable as an invisible illness because they can charge patients more for their medicine instead of covering expensive treatment. The problem lies with the doctors who still refuse to recognize all the many forms that Lyme can take and delay the diagnosis and therefore recovery times for the majority of patients. The problem lies with the pharmaceutical companies who took away the vaccine for Lyme because offering it didn’t fit their agendas. And the problem also lies with the pharmaceutical companies who charge an arm and a leg for the drugs Lyme patients need and make insurance companies even more unwilling to cover them.

I was sick for three years before I finally got diagnosed with Lyme, but once I had a diagnosis I was pretty lucky. I had a lot of support from home, from my parents, from former teachers, coaches and neighbors, and from my friends. But I never got the same public validation that, for example, a cancer patient gets, that yes, I was severely ill. This is because of the invisible aspect of Lyme. Out of sight, out of mind right? Lyme patients don’t always (or even often) look sick. So the disease gets dismissed by the general public as not that bad. And it continues to stay invisible.

The exclusion of Lyme from publications like newspapers worsens this problem. Unfortunately, the people who keep it out of the news are the same people who profit from keeping it invisible. Throughout invisible illness week, I’ve seen a lot of posts from people about all of the diseases they suffer from that are considered invisible. There are an alarmingly large number of these illnesses. And the only way to make them visible is to continue to post and write and talk about them. No illness should be invisible, and no sick person deserves to be overlooked because they aren’t suffering from a “popular” illness in the media. So in honor of the end of invisible illness week, here’s a reminder that so called invisible illnesses are devastating, excruciating and just as real as visible ones.

Also, for anyone interested in learning more about invisible illnesses, a great place to see more content is to go on Instagram and search the hashtag #invisibleillness.

I eat healthier after Lyme

The importance of following a really healthy diet during Lyme treatment is constantly stressed. While I was in treatment, I followed a relatively healthy diet, but it was hard to cut out some of my favorite foods-such as cheese and desserts-because I felt so sick anyways that it was difficult to tell if I felt any different with or without eating them. So while I tried to follow the non-inflammatory diet that most Lyme doctors recommend, including no sugar, no dairy, no gluten, and no alcohol, to name a few, I wasn’t very good about it.

Interestingly, in the last two months of Lyme-free life, I have been eating healthier than I did while sick. That is because now that I am healthy, I can fully feel how horrible some foods make me feel. For example, when I eat sugar, the next day I feel like I’m coming down with the flu. When I drink alcohol, even if it’s just a glass of wine, I feel hungover for several days afterwards. And when I eat dairy, I have trouble breathing because it activates my asthma.

I now follow a diet that would make any Lyme doctor incredibly happy. I mostly eat vegetables, free range, antibiotic free meat, and lots of fruit. Any grains I eat are gluten free, and I avoid dairy, sugar and alcohol. I wish that I had eaten this well when I was sick, but I’m glad that I do now. I have so much more energy, and I feel so much better when I eat healthy and that makes it a lot easier to follow a diet that is pretty restricting.

I don’t stop myself from occasionally indulging in a cookie or a slice or two of cheese every now and then, but I don’t do it very often. This is for two reasons. One, it is much easier to stay away from thing that make me feel bad if I don’t eat them at all. It’s very easy to start eating the wrong stuff again if I let myself eat it at all, so I mostly avoid it. The other reason is that these foods make me feel so bad that it isn’t worth eating them, no matter how good they may taste. I never thought I would ever feel that way about something like cheese, which is my favorite food ever, but I do.

While I occasionally indulge in sugar and dairy, I very rarely drink alcohol. Even a single glass of wine will make me feel like I’m recovering from the worst hangover ever for the following two or three days. I don’t think that the feeling of being tipsy or drunk is worth the after-effects, especially now that I notice them so much more.

Food has an enormous effect on our bodies. I’ve always known that and tried to eat really healthily. Now that I’m healthy and tuned into my body for the first time in years, I really appreciate how the right or wrong food can make me feel. I always thought that when I beat Lyme I’d be able to eat whatever I wanted, but as I’ve been finding, the reality of beating this illness is nothing like what I’d imagined.

Why Lyme was a blessing

Lyme disease sucks. I will never deny that because it is a painful, debilitating, horrible illness and it is absolutely horrible to have to deal with. But it also tends to help put things in perspective.

I could write a lot about the ways that Lyme has made my life more difficult, because there is no denying that it has. But in this post I’m instead going to write about some of the most important ways it has made my life better.

  1. Lyme taught me patience. I’ve always been so impatient, and having to learn to deal with the fact that there is no quick and easy treatment for Lyme, and learning to wait-that was a hard earned but important lesson for me.
  2. I learned to truly love myself. I had to learn to love my body, even when it couldn’t do what I wanted it to do, because I knew that it was putting up a hell of a fight against a horrible disease. And I am in awe of its fight.
  3. I got closer to my family. My family has always been really close. But the years where I was really sick I was really dependent on my family to take care of me. And instead of causing tension and drawing us apart, we became even closer. I would never have made it through this fight without my family and their support, and I’m so lucky to have them.
  4. I learned how to say no. Often I had no energy and therefore no wish to join my friends on whatever they were doing. It took some time, but I eventually learned how to say no to things I don’t want to do-and that’s a skill that will always be helpful!
  5. I figured out what was important. Friends, family, work, school. These things are important. Drinking, partying until the early morning, doing stupid things just for the story, or just doing things I didn’t enjoy in general-these things are not important.
  6. I figured out who my real friends are. When I went back to school after being diagnosed with Lyme, I had a really hard time because my priorities no longer matched those of a normal college student. Over the next couple years, I found that some of my friends were able to adapt to this, while others never seemed to fully be able to. Some of my closest friendships changed because those people never seemed able to completely accept that I wasn’t interested in the same things anymore. This was really difficult for me because I felt stuck in a role that no longer matched who I was with Lyme and I didn’t want to be in it. This allowed me to figure out which friends would always be there no matter what.
  7. I learned how to stand on my own. I spent about half of the little over five years that I was sick in Texas, at school more than 2,000 miles away from my parents. I had an aunt who was in the same city for a year and a half when I was there, so I had someone I could count on to be there when I needed her, but I had to learn to take care of myself. I didn’t always do a great job of it, but I learned that I could do it. I learned that I can always count on myself, and that taking care of myself means standing up for myself and putting myself and my health first.
  8. I learned that it’s okay to not be okay. I like having everything put together, or at least making it appear that I do. This was impossible to do all the time when I was sick, because I just didn’t have enough energy, or because I was in too much pain. I learned that it isn’t a sign of weakness, when someone asks me if I’m okay, to say that no, I’m not. And realizing that I didn’t have to be okay all the time (or even most of the time) was empowering because I stopped making myself pretend like I was fine.
  9. I started to listen to my body. It took me awhile but I finally stopped fighting my body when it didn’t feel well and I learned to accept that some days I literally would not be able to get out of bed because that was what my body needed. Once I started paying more attention, I felt better because I wasn’t constantly pushing my body so hard when it was already so sick.
  10. I realized how precious the gift of health is and learned not to take it for granted. Being healthy is amazing! I never appreciated it until I lost it, and now that I am healthy again I wake up every day and thank the universe for the gift of health. Health is truly amazing, empowering, and freeing.