LIVING WITH LYME
When hard things hit you in life, they either make you or break you. For a long while I let life break me, until I decided this was not who I was or who I wanted to be. I wasn’t going to be defined by the worst thing that happened to me, I was going to be refined by it. Because what choice did I have? It was happening whether I liked it or not.
DROWNING IN DESPAIR
In 2018, I decided to pick a word to define the new year ahead of me. I had just been through the worst year of my life, trying to figure out what was happening to my body as I found myself stuck in bed and bound to a wheelchair because of intense pain and debilitating tremors. I couldn’t go to the bathroom on my own, drive for almost a year, take care of my own children, and I was in a constant state of panic and anxiety.
When we finally figured out after two years that late stage Lyme disease had taken over my life, I was depressed and didn’t see how I could ever get better. I felt like a burden to everyone around me and was exhausted from simply living.
At my worst, my symptoms ranged from migrating pains, tingling and numbness, extreme crawling skin, nonstop twitching and tremors, night sweats, body aches, dizziness and weakness, fainting, seizures, nausea and vomiting, hair loss, rashes, blurred vision, brain fog, panic attacks and paranoia. At one point I was taking over 80 pills a day.
FOCUSING ON THE GOOD
My life was messy and complicated and I was blind to the goodness that surrounded me on all sides. Family came and lived with us. Friends drove over to cheer me up. Strangers brought us food. We hired a nanny to take care of the kids so my husband could keep his job. Donations for medical expenses poured in. Church leaders prayed with us. Advice was given daily, optimism was overflowing. It was irritating. I was a grump. I cried every day, multiple times a day for months.
A week before Christmas, I finally had relief. My pain was diminished and I was walking on my own. Eventually my seizures were managed and the possibility of driving again was a reality. The twitching remained as did my weight gain and night sweats, but it was all about perspective at this point. I felt like I had just escaped a nightmare. That Christmas was filled with laughter and joy and lots of hugs and kisses. We even let our nanny go and I began staying at home with the kids again.
We celebrated the New Year and I picked my word for 2018:
I was going to make the most of this second chance I’d been given. I didn’t know what the future held, I just hoped that it was Lyme-free.
LEARNING TO BE INTENTIONAL
But when February rolled around, our joy was deflated as my husband started showing his own Lyme symptoms. I had “Lymie” friends going through relapses of their own and friends of friends reached out to me to help diagnose their own health problems. As the stress piled on, I lost my view of being intentional and slipped back into my own relapse. I was devastated. I ended up back in bed from pain and seizures, and asked my parents to fly back out to live with us.
My year of being intentional stopped before it could even start.
My joy was all circumstantial. It was like I had a toolbox ready to go to help me get through the year but I hadn’t put any tools in it. If things were great, I was happy. If things were miserable, I was mad.
I wanted to succeed, but I didn’t know how. My relapse only caused me to slip back into fearful, paranoid living. If I wanted to live intentionally and with any kind of joy, I was going to have to learn how. It wasn’t going to just happen.
CHANGING MY MINDSET
My symptoms improved again with time and medication changes, but my life was stagnant. I had been living as if I couldn’t do anything until I got better. I was basically telling myself I was useless as a sick person. What if this was the best it was going to get? What if I didn’t get better? Was I okay with living the rest of my life on pause? Of course not.
So I invested in the self-help section at every bookstore in my area. Reading book after book, highlighter in hand, notebook at my side. I filled out self-exploration journals, flipped through meditation magazines, devoured books on how to find hope in hard times, and read memoirs of people overcoming the odds.
This time I was going to live as if I was already healed, and create daily habits of working on the health of my mind. If I could anticipate what I needed, then maybe I could deal my symptoms and anxiety in a healthier way.
Repeated over and over were habits that people would form to better themselves. Exercise, meditation, journaling, making their bed in the morning, waking up early–all things that I wanted to be doing. But first I needed to start with getting out of bed.
FILLING MY TOOLBOX
If I was going to be intentional this year, I had to make some plans. Give myself some ways to cope. So I started filling my toolbox. And as I did, I felt my mind become clearer, my body more energized and my life more meaningful. It’s now six months since I last had a tremor and even longer since I’ve taken a trip to the hospital. I am happier than I’ve been in years and more prepared for the future than ever.
When lyme doctors would tell me to try and lower my stress level, I would laugh. I truly believed it was impossible…unless I sat in a bubble and didn’t have bills to pay or children to take care of, and a body that obeyed my every command. I thought it was about control. Turns out it was about letting go.
I’m no longer obsessing about symptoms that may reappear because I’m living as though I’m excited for tomorrow, not fearful of it.
SO WHAT ABOUT YOU?
Maybe your word to focus on is INTENTIONAL, or maybe it’s not. Use the printable below to choose a focus word or come up with your own. Then post it somewhere you can see it everyday.
So I hope that this blog will be a helpful resource for you in the year to come as I take you through some things I have learned about creating healthy habits and finding joy in the every day. It’s not easy, and you have to let go of perfection, but you can do it. I’ve got my toolbox in hand and I’m ready to fill it. Let’s do this thing!
BEFORE YOU GO…
Get started on healing yourself with What To Do When Being a New Mom is Terrifying, Why You Need to Find a Hobby Today and Why Chronic Pain Shouldn’t Keep You From Exercising and What to Do About it.
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Here’s to another year of living intentionally!