This article was first published on the Global Lyme Alliance blog on June 14th, 2018. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
It's been said that if you want something you've never had, then you must be willing to do something you've never done. In 2014 there was nothing I wanted more than to recover from Lyme, so I knew I would have to do things I'd never done to make it happen. At the time I didn’t know how far outside my comfort zone I would have to go, or even four years later I'd still be pushing those boundaries, but it’s a lesson I’m glad to have learned.
The first thing I never thought I'd do was get an MRI. I know, MRIs are no big deal, right? But because I have claustrophobia it was a prospect I had always dreaded. The thought of being put on a mechanical table and then slowly inserted head first into a small tube was terrifying to me. Now I've had five MRIs and counting, and each one gets easier than the last.
There's a surprising benefit to constantly being forced to do things you never thought you’d do before—it builds your courage. Bravery is a muscle and when you use it, it gets stronger. Each time I came out of an MRI unscathed, it made the next one easier. And so my MRI challenges have had a broader impact on my life.
Here's a few examples of things I never thought I would do:
I never thought I would stop eating bread.
I suppose I still eat "bread," but it's not that fluffy, doughy substance I once loved. I used to have some form of bread with every single meal. I was one of those people who didn't understand gluten-free diets or the complexities of nutrition and digestion. It’s a challenge for me every day and I'm still not perfect, but the sacrifice is worth it.
I never thought I would take 50+ pills in a day.
I couldn't even swallow a pill until I got to college and at that point I was taking an ibuprofen about twice a year. I rarely ever took medication. After I was diagnosed with Lyme, I started taking the handfuls of pills and supplements that are the norm for all Lyme sufferers. Now I can swallow a pill the size of a quarter—okay, that's an exaggeration—but I can swallow just about any pill given to me.
I never thought I would get into a hyperbaric oxygen chamber.
A hyperbaric oxygen chamber is similar to an MRI, with one important exception—it's a completely enclosed tube. This makes it even more intimidating for someone with claustrophobia since you can't panic and get out at a moment's notice because the chamber has to depressurize first. I had to train myself, but now I'm able to get this valuable treatment without worrying.
I never thought I would go against one doctor's advice to follow another.
There is a link between chronic infections and autoimmune disorders and when you have both you usually have two doctors recommending opposite treatments. On one hand a doctor treating Lyme may recommend antibiotics, and on the other hand, a doctor treating an autoimmune disease may recommend immunosuppressants. It's very difficult to know which is the right decision, that is, which doctor to listen to. I just keep following my intuition and hope science will catch up soon.
I never thought I would quit my job.
I was a school social worker for ten years. I was happy doing what I loved and thought I would stay in that job until I retired. I had tenure, a pension, and the stability that most people crave. Then I got sick and didn't have the energy to meet the demands of the job. It ended up being the best decision I’ve ever made for myself, but it was not in my life’s plan.
I never thought I would move across the country.
After a couple years of backwards priorities, I realized my health had to take precedence over everything. The extreme temperatures of the Midwest were getting to me and I felt like I’d exhausted my medical options there. If I was going to get better, I needed to make a drastic change: I needed to move. Uprooting my life took courage. I would not have been brave enough to do it without first experiencing everything else Lyme and its treatment required of me, starting with that first scary MRI.
This is just a small list of some of the things I've done in the past few years in order to live with Lyme disease. It's funny, among those suffering this disease I don't even consider myself one of the brave ones. There are so many things I've seen Lyme warriors braver than myself take on and still manage to thrive. For instance, I’ve never had a PICC line or a port. I've never traveled to a foreign country to be treated by doctors who speak a different language. But I know I would do so if I felt it was necessary. That's what Lyme teaches us—we are really braver than we ever thought possible.
If you can get through Lyme treatment, you can get through anything.
"You don't have to be who you first were." - Jen Hatmaker
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I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.