My experince with Lyme Disease

Just trying to figure out how to live with an invisible disease.

[lymefordummies]

https://www.ilads.org/

[lymefordummies]

[lymefordummies]

First post 9/13/2022

Reading books written by “Lymies” made me realize that other people feel just as lonely as me. I was recently diagnosed with Lyme Disease. I already have some familiarity because my mom is currently in remission after fighting Lyme & Babesia for 5 years. My Mom was diagnosed with Lyme in 2016. Just hearing the word disease convinced me she was dying. The people around us treated this diagnosis in a completely different way. My mom finally had an answer after diving head first into a giant wall. Her "support system" acted like this was just something to bounce back from. People acted like this new diagnosis was because she had new symptoms. The TRUTH of it all is my mom was diagnosed with Lyme after years of being told she was depressed, had fibromyalgia, wasn’t exercising enough or stressed. The fact that she couldn’t get out of bed, felt “bruising from the inside” & had a daily combination of headaches & nausea was somehow her fault. She took medication to meditation & for every person who claimed that this would heal her another 10 said she was wasting her time/ money. Her friends assumed she would take pills daily & “back to her old self.” Old self? By the time she was diagnosed with Lyme it was chronic; her old self (pre-diagnosis and treatment) could have been 48 or even 8 years old. She hasn’t felt like “her old self” in God knows how long; while the rest of us saw nothing. This wall my mom saw as something to get over. Getting over this wall will make her healthy; mind, body and Spirit, right? For the first few months I prayed nightly “Please God my mom is so young, please let her live a long rest of her life pain free. Please let her get to enjoy the life she worked so hard for. Please don’t let me lose my Mom.” I didn’t look up anything online that wasn’t on WebMD. I didn’t bother to ask her Dr. questions. I didn’t bother to read the few books written by celebrities I was all too excited to hand over to her. I heard what she said “I can’t focus, I’m over stimulated, I’m tired, I’m hurting” But I didn’t listen. I said I would help her over this wall but the invisibility of this disease made it extremely easy to forget about. As frustrated as I was with the other people in her life “not believing her”, over time I found myself worried only when the disease showed rashes . Somewhere during year 2 or 3 I stopped praying. I felt pissed for a while, embarrassed I was praying to no one. To no surprise the passing of time slowly alleviated the pain into non-existence. It wasn’t until she got pneumonia that I started praying again. “Please God don’t let me lose my mother, take away her pain so she can enjoy her life & I’ll do anything I swear.” “God please take it away from my Mom and give it to me.” I wasn’t at all prepared to take on Lyme disease in my own body but I would do ANYTHING to save my mother’s life. At least that’s what I said. I was pissed that no one was listening last time so I guess a big part of me thought I was praying upon deaf ears. It’s actually really funny to me when I think hard about it.Now here I am. Officially a Lymie. And FUCK I didn’t realize how hard my mom was and still is fighting. I didn’t (& couldn’t) understand the extent of her suffering. She was physically disabled, she was emotionally drained, she was so tired and she was alone. Now I know the heart break and complete slap in the face my Mom experienced and because of her I am now determined to not let anyone face this alone.

My medical history is a story for another day. My brain feels fried. But I'll end by saying 2 things. Lymies I see you, you're not alone and just because Lyme is invisible doesn't mean you are. And I love you mama. Very very much.