It came on gradually, so I was unprepared when the symptoms began adding up. First, there was worsening insomnia each night despite my usual sleep regimen. Then, the inability to nap reared its ugly head again. Next, the crushing fatigue overtook my body, and the most basic, daily tasks fell by the wayside. Finally, I had trouble sitting up, and before I knew it, two weeks had gone by, and I hadn’t been able to get out of bed. To my surprise, I was in the midst of a full-blown Lyme setback.
But I’d done everything right. I adhered to a strict herbal protocol, ate a nutrient-dense diet, implemented all the detox and support strategies I’ve written about in past articles, reduced my exposure to toxins, spent time in nature, took all my supplements, and participated in exercise as my body allowed. In all aspects of treating this illness, I’d been the picture-perfect image of a compliant patient. How did I end up in this position?
Life with Lyme disease is unpredictable, with many twists and turns along the journey. Certainly, setbacks are discouraging, but here’s what I’m doing to rebuild my strength and help me survive this dreaded blow to my healing. If you find yourself in a similar situation, I hope you’ll find these tips useful as well.
1. Rest until you have the strength to fight again.
Often, I view Lyme disease as a battle—something to overcome—but the constant urge to fight leaves me weary. During this setback, I’ve chosen to rest and resist the pressure to hop on a treatment bandwagon; the frantic, treatment-chasing that I’m prone to doing leaves me exhausted. For me, resting and gathering information from people who are seeing progress allows me to feel like I’m making an informed decision. I have limited energy reserves and strained financial resources, so I want my next treatment steps to be strategic and not impulsive.
In addition to physical resting, I realize that I need to rest on an emotional level as well. I unplug from social media more often, and I’m working to cultivate positive, in-person relationships with people that strengthen me, as opposed to emptying me of my short energy supply. Minimizing my exposure to people or things that deplete me has proven to be a very beneficial step forward for my health.
Although you may not be in control of when Lyme decides to rear its head, remember that you have the power to make small, lifestyle adjustments, to conserve your limited resources. Also, if you need more emotional support than your family and friends can provide, don’t be afraid to reach out for professional help. If you’re not part of a support group, join one and ask for recommendations for a compassionate mental health professional who can see you through this tough time.
2. Be honest with your healthcare provider about how you feel.
When I feel like my body is going haywire, I tend to panic and find a new LLMD as soon as possible. But this time, I had an honest conversation with my treating nurse practitioner, and she sensed my frustration over the years I’ve lost to this illness. “We’re not going to give up,” she said. “But we need more information as to what we’re dealing with.”
Of course, I wanted a more immediate answer, but I trusted her instincts to further investigate my symptoms. After a little detective work, we found two co-infections (Ehrlichia and Mycoplasma) and exposure to toxic mold. Although I can’t say I was thrilled with these findings, I am somewhat relieved to have found something tangible to guide my treatment.
But for some Lyme patients, there comes a time when their clinician runs out of treatment options, and they must make the difficult decision to look elsewhere. If you find yourself in this situation, move on knowing you’ve given it your all, learned a tremendous amount about your health, and are better equipped to advocate for yourself as you pursue other possibilities.
3. Find a way to add positive experiences to your life.
When I’m feeling dismayed, it’s easy for my mind to get stuck in a negative headspace. However, this time, I’m trying to break that pattern and add more positive experiences to my life. For me, one of those positive experiences is writing. When I’m lying in bed typing (the location from where I write almost all of my articles), I’m transported to a place where a sense of accomplishment takes over, and sickness ultimately takes a back seat.
What outlets do you use to bring some positivity into a desperate situation? Are you a painter? Musician? Lover of comedies? Whatever it is that brings you joy, hold tight to it during your setback. While being optimistic during a setback may not cure you of Lyme disease, it will help you persevere and have courage during this challenging time.
4. Remember, this setback isn’t your fault.
When I’m at a low point, it’s easy for me to become self-critical and heap blame on myself. The broken record running through my mind sounds a little like this:
See, I knew I shouldn’t have eaten a bite of that doughnut!
If only I hadn’t been slacking on my detox…
I know I should be spending more time outside each day. I need to make that a priority!
But, the truth is I’ve been waging war against Lyme for years, and I’m willing to bet many of you have been as well. Lyme doesn’t always play by the rules, and sometimes, setbacks happen despite our best efforts to stick to our treatment plans. Challenge the thoughts that run through your head telling you it’s your fault. What words of encouragement or advice would you give a friend or family member? Treat yourself with the same kindness you would extend to others and be proud of how far you’ve come. It takes an enormous amount of inner strength and stamina to deal with a chronic illness day in and day out.
I’d love to hear what tips you have for surviving setbacks. Please feel free to leave a comment.
Jenny Lelwica Buttaccio, OTR/L, is an Occupational Therapist and certified Pilates instructor whose life was transformed by Lyme Disease, Chronic Fatigue Syndrome and Interstitial Cystitis. She is creator of the DVD,