Out of the blue, Izzi informed me that she wishes I weren’t “Lymed.” Her lingo, turning my disease into a verb, made me smile.
It also more accurately put Lyme disease and the havoc it has reeks into perspective. There should be a verb version of the word. After all, it isn’t just a thing; it’s an action. Lyme is a constant force in our lives, causing numerous reactions. It brought my life to a halt, yet it opened my eyes to perseverance.
I’ve learned you can be alive and not be living.
And you can be living, but not be living with purpose.
Being Lymed has changed my viewpoint and sharpened my awareness of what matters. I’m still learning, but here are a few more Lyme lessons I’ve picked up over the last year. This set of lessons is specifically for individuals with chronic illnesses, but even if you are blessed with health, there is still value in understanding and empathizing with what your friends and family with invisible illnesses, like fibromyalgia or rheumatoid arthritis, endure everyday.
1) Knowledge is power. Read, read, read. If you or a loved one has an illness, learn as much as you possibly can about it. Read medical journals, online boards, books, magazines. Don’t rely on doctors to know everything about your illness; you need to become the specialist so that you can be your own advocate. No one will care as much about your health as you do.
2) Cry. Cry because it hurts. Cry because you’re happy. Cry. It’s okay. Tears are an overflow of love, pride and gratitude. They are not weakness; on the contrary, they prove that we are alive. Saying someone shouldn’t cry because someone else has it worse is like saying you can’t be happy because someone else has it better. Don’t compare your sorrow or joy to anyone but who you were yesterday.
3) Find an outlet. For me, it’s writing. This blog has been an extraordinary channel, helping me put my broken pieces back together and use them to create something beautiful. If you are struggling, find a healthy way to channel your anger and frustration. Writing makes me feel productive, and for a woman who once went full steam ahead 18 hours a day, I need to feel like I’m accomplishing something, even when I can’t be physically active. A Broken Crayon is my lifeline.
4) Accept help. Sometimes, ask for it. And occasionally, it’s necessary to be very specific. I was the taxi-driver, calendar-organizer, cleaning service –you name it –until October 31, 2014. Then my family was left to figure out the logistics on their own. I had to learn to ask my close friends for help transporting my children to practices. I was so independent, requesting help felt like failure as a parent. It took months for me to realize that my friends, who ached and prayed for us, wanted to support us as we went though this nightmare. They wanted to help. Some offered, and some needed me to tell them specifically how. Accepting assistance is allowing others to love you through it, and that’s a beautiful thing.
5) Connect with others like you. If you have an illness, find others who will understand what you’re going through because they, too, have been or are in the trenches. There is strength in the validation that you are not alone. Thanks to social media, it’s easier than ever for me to connect with fellow Lymees. There are Facebook support groups and hundreds of blogs. I’ve made friendships with people I will likely never meet in person, but who have been there for me in a very real way when I needed them. I could vent without feeling like a burden, and I could offer encouragement to those who were feeling alone. You never know who you are inspiring.
6) There will now and forever be a dark marker on your timeline of life. You will automatically place most events in the category of either Before I Got Sick or After I Got Sick. It’s natural. Your world will never be the way it was before that marker, and even if you regain your health or, at the very least, find a way back to the you before, your view of the world will be different. That’s not necessarily a bad thing. I wouldn’t want to lose all I’ve learned, to unsee the changes I needed to make, to stop appreciating the smallest things, like bathing. If given the choice, of course I would not be “Lymed,” but I am, so I might as well work to find the good in it.
7) Life keeps moving on. Bills will arrive even when your income stops. Those gray roots will still be stubbornly in need of attention. Children will continue to grow and grow up. Someone else will take your place at work. While everyone else seems to be moving on and living, I felt stuck. It’s a cruel, complicated feeling. I didn’t want the world to stop moving just because I had. I wanted my family and friends to be healthy and happy, but at the same time, I guess I’d pretentiously thought I was central to many aspects of my world. The fact is life will keep going regardless of your involvement in it. That’s a tough lesson to learn.
8) I am exceptionally vain. I didn’t realize it until Lyme. When the steroids and lack of mobility packed on an extra forty pounds to my average frame, I felt “fat” for the first time in my life. I gained more weight with Lyme than I did when I was pregnant with Izzi. Yeah, it was a lot. My face was so round that my glasses cut into my skin. My super short haircut didn’t help mask the weight gain either. When I would hobble into the pharmacy to pick up my prescriptions, I could expect one of two reactions. Individuals either looked visibly shaken by my change in appearance or they walked right on by, not knowing who I was in this new body. I dreaded going out in public. I know it’s politically correct for me to say that size doesn’t matter, but I will never forget how it felt to be overweight, how people looked at me, how insecure I became. Lyme opened my eyes to my own vanity and insecurity and made me more sympathetic to those struggling with their own appearance.
9) Sometimes, farts happen. (You can read about this specific example here.) Roll with it. Along the way, I have lost most of my modesty. Wear a hospital gown with your tush exposed. Take a shower with the help of a nurse’s aid. Have your preschooler wash your hair or your husband carry you to the bathroom. Have your breast taped and untaped weekly to clean your chest port. Discuss the consistency of your bowel movements with your doctor. Yep, modesty eventually goes right out the window and is replaced with an I Don’t Care As Long As I Feel Better attitude.
10) Be selective with your energy. You aren’t the person you used to be, and you’ll heal a lot faster if you accept this and plan accordingly. Your body needs rest. Pushing yourself today will hurt tomorrow. Though I know this to be true, it’s something I still struggle with everyday. It’s hard to budget my energy. As a mom, I feel obligated to do it all, you know? I used to have to-do lists full pages in length. One for work and one for home. I still make lists, but I put just three items on a post-it note each day. If I complete all three, I feel productive. At one point in this illness, I felt efficient if I took a bath. That in itself would wipe me out for the rest of my day.
Thankfully, I’m now well enough to do a little more daily, but I still budget my energy. I’ll work on something for thirty minutes, then I’ll rest for an hour. I don’t make plans to leave the house on consecutive days. If there’s an event that is particularly special, like Riley’s last football game, I’ll make sure I rest all day to save my energy to attend what is important to me. I’ve finally realized that “She finished her to-do list” will not be inscribed on my tombstone.
Lyme opened my eyes to the struggles of others like me. I’ve learned a lot, but I’ve also lost a lot, moments and time I will never get back.
Chronic illness shatters you.
But if you can find most of your broken pieces, you can put yourself back together. You can return to the land of the living, and with new eyes and a whole heart, you can live with even more purpose, more intent, more gratitude, and more love.
Keep coloring, my friends.
(This is Part 2 of a three-part series on Lyme Lessons.)