TOUCHED BY LYME: Just resolving to "get well" doesn't cut it. What does?
Guest blogger Jennifer Crystal lays out her New Year’s resolution for 2014.
Last year at this time, I wrote about New Year’s being a sort of mockery for patients with chronic illness: each day of suffering is much like the one before, and we cannot simply resolve to get well with the change of the calendar, the way we can resolve to lose weight or drink less coffee. So much of our convalescence is arbitrary.
For Lymies especially, we often can’t say how our energy will be one day to the next; even taking all of our medication correctly can make us feel worse before better. Spirochetes, like cancer cells, can replicate and burrow deep within our bodies and brains, despite our best efforts to fight them. Despite our will to stop them. One of the most frustrating aspects of living with chronic illness is not being able to control what is happening to your own body.
When I first got sick, I vacillated between the classic fight or flight responses to my situation. At first I thought I could ward off reality with a “mind-over-matter” mentality. I insisted on working at summer camp despite the fact that I had a serious case of mono; I drove back to Colorado after camp, willing myself to be well enough to ski that season; years later, after long-term treatment for tick-borne diseases, I moved to Vermont as soon as I got my PICC line out, sure that my determination would be enough to see me through any hiccups I encountered.
Each of these decisions landed me back in bed, sicker than before. Resolve and will and determination and a positive attitude were not enough to combat an aggressive physical infection.
Other times, when frustration got the best of me, I’d throw up my hands and think, what does it matter anyway? Why not stay up so late that I become too agitated to sleep, read and write so much that my neurological symptoms flare with electric intensity, skip my nap to have a bleary-eyed visit with a friend?
I remember telling one friend, “Sometimes I feel like my life is a movie. What will happen next?” I figured that even if I didn’t take care of myself, even if I pushed myself beyond my limits, eventually it would have to work out, right?
Wrong. There was no script calling for someone or something to swoop in and save me. My life was not scheduled to get better in a neat little 120-minute package. I was the one writing the script. It was up to me to decide if eventually things would work out.
Of course, there were parts of my illness that I could not control; there were the actual bacterial and parasitic infections that could only be treated with intense antibiotic, anti-malarial and adjunct therapies.
But there was another part that was up to me. After my serious relapse in 2007—following the failed move to Vermont—a friend told me that he was concerned about a pattern he’d noticed since we were in college: a pattern of me pushing myself past my limits, not giving myself adequate time to rest, ignoring or perhaps not seeing warning signs until I had already crashed. “Going back to Vermont—or anywhere—without dealing with these issues would be a mistake,” he cautioned.
That was enough of a wake up call for me to really think about they way I treated myself. For so long, I’d fought my body when it couldn’t do what I wanted it to do. I got angry and frustrated when I wanted to ski or climb a flight of stairs or sit up for a meal but couldn’t. I berated myself for not getting better fast enough. My mind and body were forever battling each other. If I intended to win the war, I had to stop that pattern.
Two members of my medical team introduced me to the concept of cognitive behavioral therapy: recognizing patterns and behaviors that caused me harm, and training or retraining myself to act differently in those situations. For example, to help combat insomnia, my sleep doctor recommended that I go to bed at exactly the same time each night; that I use my bed only for sleep, so my brain would not associate it with activities like reading or watching TV; that I spend the hour before bed away from screens, listening to quiet music and doing deep breathing exercises to help myself relax. I could not control the neurological firestorm that Lyme was causing in my brain, but I could reinforce with good behavior the medications and treatments that were targeting this physical problem.
The same theory applied for the way I scheduled my day, the way I handled stress, and the way I set limits and boundaries for myself. It wasn’t easy. There were setbacks and slip-ups. It took a great deal of discipline to politely excuse myself for a nap at the same time each afternoon; to set time limits for talking on the phone; to walk away from my favorite TV show because it was making my neurological symptoms flare. I didn’t want to do any of those things, but I started to understand that I had to do them if I wanted to get well.
Over time, the new habits I created became routine. Taking proper care of myself became my top priority, and giving my health that significance made it easy to keep up the practice. Soon my body and brain were not arguing, but working as a team to get well. I started to get better much faster once my body realized that I was going to care for it properly, that I was in this fight with it, not against it.
We Lymies can’t control the spirochetes, but we can control ourselves. We can control the decisions we make and the habits we create that can help move us towards health. We can’t resolve to get well in the New Year, but we can promise to take the best care of ourselves possible, to help achieve that end goal of restored health.
Lyme survivor Jennifer Crystal is pursuing a Masters in Creative Writing at Emerson College, in Boston. Her website is jennifercrystal.com. Email her at jencrystal5678@gmail.com.
I’ve been in treatment for four years, and am feeling worse instead of better. I feel like I’ve reached the end of what I can do to try and get my old self back. This post really hits home.
Thanks, Jen. This is great advice for confronting any challenge. I think it’s in human nature to have limits, and in our nature to wish they weren’t there sometimes! Your patience is inspirational.
Jen, your real life descriptions of what you’ve been through and what you are going through always teaches me something. Thank you.
I think Jen very much captures the challenge that all of us with uncontrollable chronic illnesses face (epilepsy, neurological disorders, Chrone’s). It is a very hard hurdle to get over to just tell yourself and the world, I’m not totally in control here. I gotta listen to my body and that is just the way it is. You should be proud Jen.
Loved your post! I kept saying ‘yes, yes, yes!’ as I read it. Pushing past healthy boundaries is such a challenge for so many of us, but you did a great job of putting this into perspective within the Lyme context. Well done.
I totally agree with you Jennifer, this unpredictable illness is horrible and I can’t believe we don’t get proper treatment for it. God bless us all
It sure the hell isn’t easy. Especially if you have others dependent on yu.
Thanks for sharing your insights and sound advice.
In our culture we are expected to do more, try harder and strive to be the best. It’s a challenge not to get caught up in that mindset and rememer to take care of yourself when you have a chronic illness. Thank you for the reality check!
My daughter lost all of her memory, suddenly, when she was 14 years old. After a month and a half, she was diagnosed with Lymes, Babeosis and 6 other infections. After 7 months of intensive IV therapy, homeopathic therapy, and cognitive therapy her memory returned. I have published her story as LymeLight which is available as an e-book or paperback on amazon.com
Thank you so much for this. I’m a personal trainer and have been for many many years. I was the type of person who would do 3 a days in the gym, just because I could. Lyme Definitely put a damper on that career. Now 6 yrs after being diagnosed, I have also been diagnosed with osteoarthritis and epilepsy. Walking most days is challenging. In the beginning I would fight with my body, bc I KNEW I could do more than I was. I would push myself til I was running in tears and my shoulders dislocating during push-ups. I still train, I still go to the gym myself. But I now have learned to listen to my body, as it tends to know what’s best for me.
Your posts from 3 years ago I read when first diagnoised with a heavy load of Lymes and felt you helped in the beginning ..with reading that same post..today..barely recalling the experience due to blood brain barrier compromised 40 years ago,actually found an educated inspiration once again.. Its so kind of you to try so carefully to help people in need. Today , my day was relieved after figuring out I am not alone ,,with all the symptoms of reoccuracedepressing this past 2 months. only a year ago, I decided to dedicate 2.5 years of 100mg .2x dailyl of Doxicycline..and have at least had 1 year of less pain & suffering and brain issues..thank you for showing me a way to stay strong enough to get thru today ..and fight this battle once again . Almost thought the new auto immune disfunction almost too much to bear. thank you so Much..from the bottom of my heart!