When I was approximately nine or ten-years-old, I found myself having intense headaches and was so lethargic I didn’t want to get out of bed. My mother, being the good mother she was, took me to the doctor. My headaches were not centralized on my sinuses, but on the top of my forehead.. But it seemed that I had some infection or another, and everyone’s guess was that I had a sinus infection – something my family was prone too. That theory seemed to ring true when within hours of my first dose of antibiotics I started to improve.
After not feeling like myself for several weeks, I still remember the thrill of getting my energy back What a relief to be able to be active again and play outside! Like most childhood illnesses, it appeared my sickness was a brief blip on the radar. I finished my course of antibiotics, and all seemed well. That is, until several weeks later when all of my symptoms returned. Back to the doctor we went, more antibiotics, and the same results. I felt great while on them, and then once off of them slowly had the symptoms return. After dancing this jig a couple of times, my doctor sent me in for an MRI to see if I had clogged sinuses. They were as clear as they could be.
With that, my doctor refused me any more antibiotics for my fatigue and headaches, and my mother was perplexed with what to do with me. I don’t remember exactly what happened from that point forward, except that my mother put me on a special diet, and she tried to encourage me to get out of bed as much as possible. I don’t know for sure, but probably within this time frame, or soon after, my digestive difficulties may have also began (though there were perhaps other factors involved as well for why that happened). I do remember neck stiffness, eye issues, and some ear ringing.
Over time, my symptoms became less severe but I also learned how to cope with the fatigue, headaches and my overall malaise.
Little did we know that these symptoms were likely caused by Lyme Disease. I never had the rash from a tick bite, but I had spent plenty of time outdoors hiking where there were ticks, and playing with a herd of goats up in the mountains at my grandparents. My symptoms weren’t as severe as they are for many people (high fevers, for example), and other symptoms didn’t emerge until years later. My immune system was likely keeping the infection mostly at bay as I was able to get on with my life – although with less energy.
In high school, I did go through periods of deep fatigue, but by that point I had accepted fatigue as just a part of life. Because I was homeschooled, I think my quieter lifestyle prevented me from comparing my energy to my peers – so I didn’t really question whether I was experiencing something abnormal. But my low energy became increasingly obvious to me when I went to college. I was exhausted by noon, and would have to take a cat nap as best as I could in the student lounge, and then would be in bed by nine that night while my peers were partying it up and still showing up in the morning. As life went on I wondered why it seemed like I had such a hard time keeping up on life. All moms were tired, but they still seemed to be able to keep up on more than I could. I worried it was somehow a reflection of my work ethic at first, but eventually I came to accept that there was something wrong with me, even if I didn’t know what.
As I sought help for myself, I was diagnosed with adrenal fatigue, told I was as healthy, or finally, found out that I had extremely low iron stores. My symptoms would improve and even go away sometimes, only to come back much worse in the future. Achy joints, headaches, my hair falling out, and more pointed to autoimmune or thyroid issues, but nothing conclusive was ever shown on standard testing.
The only practice that consistently helped me was getting a lot of rest and eating very well. That changed when high stress related to a situation with an old family friend and other things made my insomnia flare up for months. We worked through that and were somewhat stable when I got pregnant again, and joyfully welcomed another daughter to our household. Two weeks after birth her nose began to run, and my oldest had swollen tonsils which wouldn’t go away. Long story short, our basement was growing mold and after a very quick and stressful move out my health collapsed completely (though my children rebounded almost immediately).
I had never been this sick before though low energy had haunted me since my childhood. I developed adult onset allergies, severe chemical sensitivities, very inflamed joints, and was truly exhausted. We think that my body had been able to mostly cope before this point with Lyme Disease, but after stress coupled with prolonged mold exposure during pregnancy, my body couldn’t keep fighting it off. I went on a strict AIP diet and it helped, but was hard to maintain and I was still very sick. We ended up having to move twice more, and I started getting back to back infections and this went on for months. After seeing several doctors, wondering many nights if I should go into urgent care, I got a recommendation for a new doctor.
He treated me for mold exposure and through that, and other therapies I improved, but it was obvious that I had something else going on. We finally decided to test for Lyme disease. It was something on our radar for a long time. I told my husband, Joel, that if I tested positive, it would explain all of my symptoms, but I was still surprised when it came back positive.
It appeared that stress, mold, pregnancy, and three moves in a year had finally caused Lyme to win a long battle with my body to completely over run it.
Although I choose a more gentle treatment for it, the die-off effect was so extreme I ended up not only far worse but also in the emergency room with stroke symptoms. After that we went to tiny amounts of a natural antibiotic, and was still so sick it was hard to leave the house and all of the horrible infection symptoms- that we now knew were likely related to Lyme – came back to haunt my every minute. After trying to stick it out for months and seeing myself decline rapidly, I went back in to my doctor, and we changed plans completely. All of my labs looked worse, my inflammation was incredibly high, and I had extremely high amounts of Epstein Barr virus in my body. The new herbal protocol we started brought almost immediate relief. I had about four or five months of much better health during the summer, but then crashed yet again this last fall. I am starting to rebuild to have better days again, and everyday I wake up not feeling like my body was falling apart from the inside out, I’m grateful. I have a very long way to go still in my healing journey, but I’m thankful to know now what has haunted me all these years.
Throughout this journey I’ve started privately writing a lot about suffering, pain, and my relationship with God. I’ve written many words about the cost of suffering. I want to share some of that journey with you all.
But today, as share this broad sweep of my story, I want to share some of the ways it has turned my life towards a new direction that have been positive.
I was a very physically active young girl, but I also loved books. With my lack of energy, I turned more of my attention to my books then I would have otherwise. While I can grieve the benefits a healthy body would have given me, I do cherish the wonderful world of books I discovered so thoroughly at a young age. That love of learning and reading has never slowed down and I’m grateful for it still. Books have added a richness to my life that I will never regret. And one of the first things I add back into my days when I am feeling well enough is sharing my love of reading with my girls. It brings me so much joy!
I think that it’s easy when you’ve had a smooth go in your early years to be blind to the pain of the world around you. I think not having perfect health helped me learn empathy from an early age. I had to learn not to over empathize later in life (stepping foot in a hospital would make me feel faint, for example), but true compassion for others is a gift that I pray to keep growing in. Sometimes when you have never faced any significant struggle, compassion can be hard. So I hold dear the empathy the mystery of illness has taught me.
Surprisingly, pain and loss have taught me to value wonder and mystery. While there can be a mystery to the pain we experience in life, sometimes it also points us outward to a bigger mystery – the beauty of our world, and the wonder around us. Until recently, I could never understand why God choose to point to the wonder of the physical world and his involvement in that world as his talking point to Job in the Bible. Job was under immense suffering! Why should he care about the goats giving birth high in the mountains? But as I’ve grappled with my own loss of health, I appreciate more the wisdom of this passage. I don’t have all of the answers why God has allowed me to suffer. In fact, I’d say it was a mystery overall. But somehow out of the mystery of suffering, I’ve come to grapple with the mystery and wonder of God – including through his amazing created world. When very sick, I also don’t care about animals giving birth and God helping animals find prey out in “nature”. All I cared about was God helping me with my overwhelming pain. But as I start to improve and wrestle with the mystery of my illness, the reminder of God’s vast wisdom, love, and power bring surprising comfort, even while it acknowledges the mystery of God’s plans.
I have no doubt that my life would look different if I had not struggled with severe low energy at times in my life, and such a complete health collapse recently. If I dwell on only the losses, what I missed out on can stun me. Heaven is the only place where suffering can be made right, and pain fully disappear, but I do see glimpses of grace in this path I’ve walked. Books, compassion, and wonder are all wonderful gifts to have, and for them, I am grateful.