*I wrote this back in May of 2019 for Lyme Disease Awareness Month. This is a big piece of my story, so I thought I would share it again on my blog in hopes that it might help those living with similar struggles. I still have my good and bad days, like many surviving chronic illness, however, the past few months my health has been slowly improving.
Being chronically ill requires a strength that I can’t explain. Although our bodies may be weak, those fighting this battle are among some of the strongest souls I know because each day we are at war with our bodies. Pushing just to exist, let alone parent our children, we climb mountains everyday.
I’ve been climbing mountains for 27 years and this is my story. It’s a story of surrender and acceptance, survival and perseverance. It’s a story about living with persistent Lyme Disease.
Prior to my diagnosis a year and a half ago, I was working as a Social Worker with Child Protective Services. My plate was extremely full, I was under a ton of stress and drinking up to 12 shots of espresso per day to combat the neverending chronic fatigue.
Profound fatigue was something I have struggled with since I was thirteen years old. Before having our two daughters, I dealt with numerous “crashes” over the years. My body would give out and I would be bedridden for 18-24 hours a day, up to three months at a time. Doctor after doctor left me with no answers though, so I would eventually peel myself out of bed again and push through the fatigue in order to live life the best I could. That’s when caffeine became my best friend. But caffeine only masked my symptoms. The underlying fatigue remained. And as my tolerance grew, I had to increase my intake. I knew I had to stop, but wasn’t sure how I would function.
It wasn’t until I got off of the copious amounts of caffeine I consumed each day, that I could see how truly dire my condition was. Continuing my search for answers, I fought harder, yet still there were no concrete answers. I left each doctors’ office with a little less hope than when I walked in.
Two years ago, I saw a Naturopathic Doctor who took the time to dig into my medical history and test me for Lyme Disease. The standard test which is often inaccurate, came back negative. Showing little improvement, she looked over my tests again and referred me to a Lyme Literate Naturopathic Doctor who encouraged further testing.
It was at this point that I finally had an answer: persistent Lyme Disease. As I sat in her office, my ND asked me how I felt about the diagnosis. I had a lot of mixed feelings. Having known in my heart that there was something very wrong, I was so relieved to finally have an answer. After the relief, came anger-towards the 20+ doctors I saw who missed this. Then, fear set in when I began researching Lyme Disease, learning just how complex and difficult it is to treat, that medical insurance covers little to no treatment, and that the few doctors knowledgeable in Lyme Disease are usually not covered by medical insurance.
It’s been a year and a half since my diagnosis and the fear still comes in waves, intensifying on my worst days, days when I am so weak that I can hardly move my limbs or even my mouth to speak, when just brushing my teeth or taking a shower feels like I’m climbing Mt. Everest, when my joints are aching like I have the flu, and I feel like my brain is out to lunch because the thoughts I had the second before, have completely vanished, when existing feels like it’s stealing more energy than my body can produce.
One of the hardest parts of this journey is the treatment. As treatment works to kill the bacteria that causes Lyme Disease, there is a die-off reaction in the body, called a “Herxheimer Reaction” or a “Herx”. A “Herx” can make a person much sicker, before there is improvement. “Herxes” happen often for me during treatment and intensify my already debilitating fatigue and weakness.
But, it’s not just the physical symptoms and fear that take its toll. It’s other emotions too. There is the grieving of dreams I once had for myself and my family. There is the depression that settles upon me when I’m at my sickest, wondering if the unbearable fatigue and weakness will ever end. There is the guilt I carry from not being able to meet my own or my husband’s expectations for our family.
Yet, despite the roller coaster of physical symptoms and emotions, I have learned to manage as a mother and wife. Some of the tools that I use on a daily basis are:
- Surrendering and leaning into God, first and foremost, by reading His word, Bible journaling and memorizing scripture. I’m not strong enough on my own to survive this illness. I need Him every moment of every day.
- Pacing and prioritizing-Because the fatigue is often so severe, I must constantly pace myself, prioritizing and choosing between daily tasks that most people take for granted. On my worst days. I may have to decide between a shower or making my kiddos lunch. Of course, my shower is what waits because my kids always come first.
- Patience-One of my toughest lessons has been patience with myself and with my family. When my symptoms flare, it’s easy to become grumpy with the ones I love most. I am still learning to have patience with my husband when he’s struggling because the weight of my illness and extra household tasks are wearing on him, patience because he will never be able to fully comprehend the relentless fatigue, patience with my kids because they’re being kids and patience with myself and the recovery process, because despite doing all I can to heal, I still feel awful much of the time.
- Gratitude-I count my blessings each day in order to stay positive.
- Acceptance-This is ongoing. I’m learning to accept where I am and that what I’m doing is enough-even though it’s nowhere near what I want for myself and my family.
- Setting alarms multiple times per day. I do this because my short-term memory has been affected and I forget things often.
- Acting-I sometimes feel like my own puppeteer, forcing my arms and legs to move when by body is telling them not to, or laughing and smiling, when inside I feel like I’m dying. I “act as if” because my will to live is stronger than my will to die. I “act” and push because I want my family to have some sort of normalcy. I don’t want to be sick and I don’t want to wallow in my illness and pain-I want to live, not just survive, so I “act as if”, hoping that one day I won’t feel the way I feel. I “act” because being vulnerable and letting people see the real pain and struggle is sometimes just too much. I “act as if” because accepting that this is my life and my life for my family is really, really hard. And I “act” because on the outside I look fine, even though on the inside, I feel so far from it and people just don’t understand this.
So if you know someone with an invisible illness, be that person who takes the time to really listen. Show kindness and compassion always. We are fighting battles you may not be aware of and you likely may never fully comprehend. Try to see the mountain we are climbing every day.