So, what DO you need to know about Lyme disease? What would help you understand the journey of your friends who are walking this road?
I’ve had a very unusual Lyme journey compared to most. An 8 year reprieve from symptoms is not something that you see very often, but that is the reality of what I dealt with. If you want to learn more about my story, you can find it HERE. Lyme has crept back into my life over the last year and a half, and although this sounds bizarre, I’ve been grateful for the reminder of what I’ve been able to climb out of. I had a very difficult 5 years of battling through this disease, and I had forgotten how debilitating and lonely it felt. Here’s what I think those of us in the Lyme community would want you to know about Lyme disease.
PLEASE read through to the end, because I have a message of hope for those that suffer with Lyme that I don’t want you to miss! But for most of us that walk in this Lyme life (or really any autoimmune or chronic condition), these are the top 5 things that I believe will help you understand us a little better!
It Is Lonely
When you don’t know what’s going on with your body, you don’t have words to communicate to anyone else what it feels like. And you’ve most likely had a doctor tell you that you’re crazy or have about 10 other conditions before you find out you actually have Lyme. You look around and it’s hard to think that you can tell anyone what it’s like to be in your shoes. When I was walking through Lyme almost 15 years ago, there were no online support groups or communities. No one knew what Lyme disease was. No one understood why it was so hard to get out of my house each morning. Though it’s getting more press and attention now (as it should be!), it’s hard for people to wrap their brains around what we walk through.
It Is Unpredictable
I would say this is at the very top of my list of why having Lyme disease is so cotton picking difficult. You have NO idea what your day will look like or how you will feel. I have such vivid memories of being at a friend’s house or a fundraising event, and within the span of just a few minutes, I would have to be in the car heading home. It would feel like the life had been sucked out of me without warning and I HAD to go lie down. There was no question about it. Just last week, I was playing with my kids and within a minute, I was dizzy, light headed, had a racing heart, and was so tired that my legs could barely hold me up. I then had to decide if it was worth it to call my husband or just figure out how to make it through the next two hours in any possible way. So please know that we would love to be anything BUT unpredictable, but that is the reality for us on most days.
You Can’t “Push Through It”
This is probably one of the most difficult things that I’ve had to come to terms with in my journey. If you push yourself, you could put yourself in bed for weeks. Now of course, with this comes discernment. Sometimes I’m really tired, but I haven’t slept well that week, and I know that tomorrow can be a lazy day so that extra busy day is doable. But when my body is on the edge and my nerves are threatening to get angry and I start to get the chills for no reason and I feel my heart start to flutter, THERE IS NO PUSHING. It means I’m putting on a show for my kids and sliding into bedtime with as little effort as possible. It means I’m not working out that day and I don’t just need to “push a little harder.” Nope, nope, nope. And this brings me to my next point.
Am I tired because the Lyme bacteria or a co-infection is flaring? Am I just tired because I didn’t sleep well but my body is ok? If I workout today, will it feel good or will I have to crawl in bed for the rest of the day? Will that cup of coffee put me over the edge or will it be ok for my stomach? Is my headache a foreshadowing of days of nerve pain or is it just a headache?
These are all questions that I ask myself on a very regular basis, especially when my body is on the edge. Unlike many that suffer with Lyme, I do have long seasons of feeling well when I can push myself. But when I was in the thick of treatment, it was a constantly confusing space to be in. And when I’ve had flares these last couple of years, these are the questions that constantly go through my mind. Most days, you don’t know which end is up and that makes for a constant state of confusion.
Those of us walking with Lyme disease (or any autoimmune disorder) are just plain exhausted. Our bodies are always working overtime, and it is constantly tiring. Many of my friends in the Lyme warrior community have been battling this disease for decades. And life doesn’t stop, so we can’t either. But man, it is hard. I think the mental exhaustion and overload is the most difficult part of this battle for me personally. For all the reasons mentioned above. You don’t know how long a flare will last. You don’t know if you’re gearing up for weeks of difficulty or possibly even months of a challenge. You don’t know if that brain fog will lift or if it will feel like your mind is in a battle with you for the next few weeks. Everything about it is tiring. So please know that although we WANT to be out with you and connect with others, we are just plain out of gas.
A Message of Hope
While all of the above is true, I want to also communicate that there is hope in the middle of the battle. As my mindset has shifted from “fighting disease” to “creating and supporting health and wellness”, I’ve found that I feel so much more empowered to move forward in this journey. My “herx” periods are shorter as I’ve learned the power of detox support. My brain fog lifts easier with the help of good supplements and quality nutrition. The more I read about all that ails us, whether it be Lyme, cancer, candida, autoimmune disease, or any other challenge, I find that supporting immunity and wellness is where the heart of the battle is fought. It’s counter culture and it sure as heck isn’t a popular way of looking at things, but I do believe that this is the new frontier of health. Our bodies were made with incredible capacity for healing WHEN they have the tools needed to function the way that God made us.
I hope that you’ll sign up for my weekly email where I truly, truly work to make health as simple as possible. As a now busy and work from home mom to 3 kids, I know that health absolutely cannot be complicated! If you want to hang out for daily tips, please catch me on over HERE on my Instagram account. Recipes and daily tips are always waiting for you there! And as always, someone who understands that life can be tricky but we do it TOGETHER.