Life with Lyme: How Chronic Illness Brings a Change of Perspective from TheBlissfulPoet.com

Life with Lyme: How Chronic Illness Brings a Change of Perspective

Denial is a perfectly comfortable place to be…until you realize that’s where you are.

When I was diagnosed with Lyme disease earlier this month, I had to shed multiple layers of denial I’d wrapped around myself over the last couple of years. It was cold, and somewhat embarrassing, to be suddenly exposed. Especially when all I ever want to do is hide.

But there it is. We all have issues, and one of mine happens to be chronic illness.

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My mom was diagnosed with Lyme first, a couple of years ago. Most people don’t know how sick she’s been because for the most part, she just keeps doing what she has to do. Even when she feels like shit. (Pardon the language, but that’s exactly what chronic illness is: jarring and offensive. Any kinder word would be grossly inaccurate.)

There have been days my mom could barely function, and there have been other days–better days–that she just gets through. When “getting through” is consistently the mark of a good day, something’s wrong. But she found a fantastic doctor who helped her find the right natural remedies (including herbs and essential oils) to suppress the Lyme and put her in remission.

Knowing some of the health issues I’ve had over the past couple of years, my mom pegged me for Lyme, too. I didn’t take it that seriously. For one thing, it’s not like I was missing work consistently or unable to get out of bed each morning, so I didn’t consider myself sick, even though I knew some things were amiss. (Plus, daughters are notorious for not taking their mothers’ advice right away. I was just fulfilling the stereotype.)

But things started feeling too wrong, too consistently. Experiencing symptoms in ones or twos makes it a sneaky disease because it doesn’t really feel like a problem; it feels more like a bad day or an off week. Like maybe I shouldn’t have had the cheeseburger or the Snickers bar or the milkshake. Like maybe I needed to drink more water or get more sleep.

For years I’ve had problematic skin, digestive issues, and persistent muscle + joint pain. My doctor told me to limit my gluten intake, but I learned pretty quickly that if you go g-free and you don’t have Celiac disease, people think you’re ridiculous. You’re one of those people. You avoid gluten because it’s trendy, “paraben” is a four-letter word, and you only brush your teeth with coconut oil. In other words, people think you’re a nut.

I didn’t really know what to do. What happens if eating a bagel won’t kill you, but it will definitely cause persistent pain? Then go ahead and order the fruit cup instead, but don’t you dare tell anyone it’s because you’re avoiding wheat unless you want to hear some opinions you didn’t ask for.

Ultimately I chalked up my frustrations to poor diet. I figured if I drank only water and ate only salmon and greens, then maybe my stomach wouldn’t hurt and maybe my skin would stop breaking out and maybe my joint pain would disappear. Maybe I’d be able to run without limping and I’d have more energy. Maybe the headaches would subside and I’d be able to focus more easily without zoning out and missing details all the time. If I could just make better choices every single time, then I’d look and feel normal.

But what happened every morning was this: I’d wake up, drag myself out of bed (if my husband didn’t do it for me), and begin counting down the hours until I could just exist. Not live or interact or be a real person, but exist. Preferably wrapped in a blanket on the couch where I could pretend I wasn’t responsible for anything.

When I finally sat down and listed out every symptom I was experiencing — some for as long as I can remember and others only within the last year — it was vast and startling. You really start to question your body and how it functions when you experience things like:

  • Migraines so bad you have to pull over while driving to throw up on the side of the road;
  • Hip, knee, and shoulder pain that keeps you from running, lifting weights over, oh, FIVE pounds, and sometimes even walking normally;
  • Breakouts so bad you consider wearing ski masks to work;
  • Jaw pain and stiffness that make it hard to enjoy foods with more resistance than cotton candy or chicken broth (but I didn’t stop eating cereal, because I don’t believe in giving up on my passion);
  • Digestive issues that don’t let up unless you cut out wheat, dairy, sugar, and every other delicious thing that makes a food worth eating enjoyable;
  • Numbness and tingling in your fingers and toes;
  • Persistent neck and shoulder pain;
  • Leg pain and poor circulation;
  • Waking up every morning feeling like you have a hangover and struggling to walk without legitimately losing your balance;
  • Intense fear that sweeps you up out of nowhere and makes you terrified to even get up for the bathroom in the middle of the night; and
  • Anxiety attacks that include a pounding heart, terrible shortness of breath, uncontrollable shaking, nausea, and disturbing, irrational thoughts.

Of everything, the fear and anxiety were the strangest. I’ve always been a very mellow person, a true Type B. But at the beginning of the summer, something ominous pervaded my spirit, and all of my thoughts and expectations became very dark. Nothing in my life felt secure, even — maybe especially — those things that always brought me the most comfort. I became afraid of our house, our new home that we’d only just purchased a few months earlier, and being alone there terrified me. As someone who has always highly valued independence and personal space, this was frustrating. I didn’t understand it, but there it was.

(Note: I don’t feel very qualified to talk about anxiety, especially since I haven’t been diagnosed with GAD or chronic anxiety. But I do know it’s a lonely, desperate place to be, and I’ve only just seen inside the front door. If you’re struggling with anxiety, please talk to someone about it. Find someone at your church with whom you can pray, or seek other resources. Just don’t go through it alone.) 

Despite my strange cocktail of symptoms, it took me a long time to get tested for Lyme. I didn’t put it off intentionally; I just didn’t call my doctor. Part of that was the denial. But strangely, one of the things I worried about in being diagnosed was what my husband would think. Irrational thoughts crept in and convinced me that even though he might support me, he would think of me differently. Maybe he would think I was disgusting, or he would be put off by me. Maybe he would think I was blowing everything out of proportion.

Maybe he wouldn’t love me as much.

But he has proven over and over again that short of me skinning a litter of puppies in the backyard and eating them alive, there is absolutely nothing I can do that would make him love me any less. (See what I mean about irrational thoughts?) He has not only said it, but shown it. Consistently, as though it were second-nature. As though it were as logical as drinking water or getting enough sleep. He, of all people, loves to disprove my fears. He does it well.

There were other worries I had about being diagnosed. For instance:

  • What if I start treatments and I get worse instead of better?
  • What if I find out about co-infections that are more difficult to treat?
  • How will I know what to eat and what to avoid at all costs?
  • How much more time, effort, and money will I have to put into planning and cooking the right meals?
  • What if it interferes with the HUGE goals I’m working toward?
  • What if I can’t get pregnant?
  • What will other people think?
  • What if nobody takes me seriously?
  • Should I even tell anyone other than my closest?
  • Will I still be able to afford my wine and Lucky Charms supplements and antibiotics?
  • Will I be sick forever?

But that’s life. Everyone has issues, but that’s not the part that matters. What matters is how you react to your issues, whether they sneak in over a lifetime or come out of nowhere and knock you to the floor.

The interesting, perhaps cliche thing about struggle is that it gives you a purpose. The immediate effects of struggle aren’t pleasant. They may include nausea, sadness, anxiety, frustration, muscle pain, confusion, fatigue, money worries, insomnia, indifference, depression, you name it. But struggle, while inherently unpleasant to experience, gives you something to do. If it doesn’t give you a story, then it adds to the one you already have. Ultimately, struggle is something you have to take by the shoulders, look in the eye without blinking, and say, “I win.”

(Or you could call it names and then kick it in the balls. Your choice.)

If you're dealing with Lyme Disease or any other chronic illness, don't give up.

 

Oddly, I now feel thankful about my diagnosis instead of fearful. (Okay, aside from the day I found out. I felt sad that day, so I bought myself new pajamas and some kombucha. ¯\_(ツ)_/¯ ) Because honestly, the only thing that has changed is the knowledge. Seriously, if I’ve been living with it this long, then I can keep living with it, only more wisely and with the intention of knocking it out.

I’m thankful because now I know what’s wrong, so I can work on a solution.

I’m thankful because my body is SO INCREDIBLE to have kept me going as well as it has. My immune system, man! She’s getting tired, but damn if she isn’t spunky. Now I can boost her up and give her what she needs to get stronger.

I’m thankful because of the immediate support that rallied around me when I found out. Because my mom has gone through it, she knows all the right people, so I don’t have to worry about finding them myself.

I’m thankful for my faith, and for my belief in a God who doesn’t owe me anything — including good health — but who does thrill in working miracles. I’m thankful for the audacity to believe for complete healing, and for the gift this illness will be if I don’t receive it.

I’m thankful that vulnerability from one person breeds confidence in another. As inclined as I am to keep everything to myself, it always feels so much better to connect with others and tell the truth. I’m thankful for something to be vulnerable about.

Mostly, I’m thankful to be alive. I don’t say that to be dramatic; Lyme is not a life threatening disease for most people (though it can be). It’s just a quality-of-life threatening disease. Sometimes the mundane details of life cloud my perspective. I get bored, ungrateful, greedy, unimpressed, frustrated, indifferent. I forget the point. But the point is never perfect health. Or a perfect home, job, spouse, closet, vacation, or investment portfolio. The point isn’t perfect anything.

The point is purpose.

And that’s what struggle gives you.

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Chronically ill? Here’s the reading list I’m working through slowly. If you’ve read any of these or want to read along, let me know in the comments below! 

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