My Lyme Story #2
My childhood was filled with the outdoors, sports, friends and playing outside (in tall grass sometimes) until the sun went down. I have been sick for as long as I can remember. As a child my parents were told I had learning disabilities, anxiety and was somewhat of a hypochondriac.
In middle school my anxiety got worse. In high school I thought everyone was depressed, had headaches, lack of concentration due to boredom as well as chronic aches and pains. I remained active, but was struggling on the inside. The spunky youth I had known and loved began to vanish.
I knew something was wrong, but no one ever listened to me. My parents had begun to believe doctors, because at that time we were told that doctors knew it all. The couldn't be the furthest or the truth when it comes to Lyme. That isn’t even close. In college I was a pretty regular student who struggled with memory, concentration, insanely painful “restless legs” that kept me up a up night unable to sleep, migraines and severe fatigue. Freshman and sophomore year came and went and Junior year (after I got my first dog) can be remembered as feeling like I was being mauled by animals. Anxiety and panic attacks, deep depression, concussions (from sports), loss of vision, hair very slowly began falling out and I had a feeling of doom in the pit of my stomach at all times.
I struggled with remembering enough information for my classes, had to rest more and slowly withdrew from being as extroverted as I used to be. I got shingles the second time, yet doctors never questioned why a “healthy young adult” could get it. My anxiety, depression, migraines, back pain and exhaustion I was told, were the regular pressures of school. I had allergies that allergy shots never helped, and was written off by almost all doctors as “stressed” until one day my life began to change as I knew it.
Finals week before college graduation, the pain from my second bout of shingles got worse, my vision had doubled in severity, the health of my gums and teeth got worse after years of not having cavities, migraines were debiting and I had begun losing my ability to walk and had other extremely weird symptoms and was given heavier anxiety meds. But I continued to have zaps in my head, shooting pain that felt like knives and a hip bone that felt like it was being crushed into rock. I jumped from doctor to even better doctors with the possibility of having MS. I got diagnosed with fibromyalgia, to which I researched about, knew it was more and a doctor told me I was the worst case he had ever seen and he thought I had ALS. Test after test came back fine and I was labeled as a faker and actor. Doctors got into my face, yelled at me and verbally abused me.
Family didn’t believe me, friends were lost and it was a dark, scary time. I had to be carried up the stairs, get help being changed, held up in the shower, be fed and crawled to get my medicine only to struggle opening the cap. I couldn’t sleep, my chest hurt, the weird symptoms got worse and I didn't know if I would wake up the next day. Sometimes I didn't want to.
I fought like hell after such verbal abuse by those around me and continued to see other doctors while everyone thought I was insane. I had seizure like symptoms, severe stomach pain (later diagnosed as celiac and SIBO which had always been misdiagnosed) even weirder symptoms that I couldn’t explain and completely lost my personality. I felt like a shell of a person and so deeply depressed I wanted to die. My boyfriend that I was supposed to get engaged to left me, my poor parents thought I could have been on drugs because I was acting irrationally, erratically and had bouts of rage that took over my body. In any person's eyes that didn’t know Lyme, I was insane.
I pushed to see different doctors, got the right tests and found out I had bartonella, followed by Babesia and while I haven’t tested CDC positive for Lyme, we all know it’s an evader of detection now. I never gave up fighting, trying to work, reaching out to new and better medical professionals and didn’t stop until I was heard.
I now run an Instagram called littlelymelife in which I share my raw grueling days. Days I went back to work, relapsed then got a better job just to relapse again. Days I couldn’t afford any treatment and days I didn’t want to live to suffer anymore.
I finally reached out for help, forgave myself for feeling guilty for needing it and learned so many skills on how to cope. I have a boyfriend again and while my symptoms aren’t always that much better, I didn’t have to use a wheelchair anymore, I can take showers on my own, got the right meds and finally got some sleep. While the days are hard and the times may get dark, it’s hard to deny even the smallest steps in recovery.
I want people to know that things do and can get better, you will get stronger and you will get your personality back. You will know who is there for you in the tough times and be okay with cutting out the ones who aren't. You will trust yourself to make the right decisions, make mistakes and you will grow.
The stages after the small recovery steps, no matter how small, are beautiful. You will have a different outlook on life and there will be days when you look at the sky with joy that you are still alive. Your life will never be like it was before you got sick, it will be better.
In a few years I will try to go back to school, become the therapist I have dreamed of being, begin a family and I won’t regret a thing because it has made me a better person. We will become more loving, more joyous, stronger and know we can support ourselves through anything.
The chronically ill will travel into the darkness, hold close to those who support us and never give up hope until light reveals itself to a better life.
For as long as I can remember I have always been the sick kid. In high school and college, I had bins full of over the counter medications to help with the copious amounts of symptoms I faced daily. Doctors continued to deny my symptoms and told me that I was anxious and stressed. It wasn’t until I was forced into a wheelchair did doctors start to realize I wasn’t just sick, I was extremely sick. At the age of 23 I was finally diagnosed with multiple tick borne illnesses, MCAS, Celiac Disease, PTSD and ADHD. I have made it my mission to spread awareness of invisible illnesses. It took me a long time to realize that I was not alone in this journey, and I want others to know they aren’t either.
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