Lyme disease, Babesia, bartonella and a myriad of invisible chronic conditions have consumed my body and stolen away the person I used to be. I am weak and battle-weary, but I am a warrior.
I am a Lyme disease warrior.
It feels like my once fit and athletic body has been taken away, leaving behind weak and atrophied muscles. It feels like my brain has been taken over by foggy jumbled thoughts and delayed responses, especially when trying to comprehend what I am hearing or reading. On days when my neurological Lyme symptoms are more pronounced, sound and light sensitivity escalate to the point I need to sit in complete silence, with the window shades drawn.
I am fearful of my future. I am fearful of deteriorating to the degree of what I have witnessed happen to my mother with dementia.
I try to see the lessons I am to learn from this journey. But as I write this, I am once again overcome with immense emotion — tears streaming down my face.
I loathe being this ill all of the time. Day in and day out. Week after week. Month after month. Year after year. Decade after decade. Life passes by — without me.
I pray to God for strength. I pray for my mind to be clear, and for my body to be strong. I long to be active and to live a “normal” life.
I miss the vibrant, strong-willed, independent, athletic, sassy, semi-intelligent, “life of the party” person I used to be. I miss playing golf and going for walks with my hubby. I miss working out and being fit. I miss being able to travel. I miss seeing my family. I miss socializing with friends. I miss shopping, in public, not online. I miss feeling well enough to simply leave my house!
Extreme debilitating fatigue, headaches and nausea, feeling like I have a permanent case of the flu — this is my life.
Constant body temperature changes from feverish and chills to hot flashes — this is my life.
Deep bone pain that migrates throughout my body — this is my life.
Setting alarms to map out my medications and eating schedule, which changes daily — this is my life.
On a good day, I move from my bed to my recliner, wrapped tightly under a blanket, even though it may be 100 degrees outside — this is my life.
Yes. This is all my life right now. But above all — I am thankful.
I am thankful for the days I am able to muster up the strength to get out of bed. I am thankful for the beautiful and calming view I am able to enjoy from my recliner, where I spend most of my time resting, when out of bed.
I am thankful for my caring and amazing husband, who loves me deeply and sees me for me — the sassy, strong, healthy woman he met over 22 years ago.
I am thankful for all of the support and love my husband and I receive from family members and friends throughout this relentless Lyme disease journey.
The list of all I am thankful for, by far, outweighs all of my daily challenges.
My life has changed tremendously, especially over these past 15 years, due to my battle with chronic Lyme disease, co-infections and the multitude of chronic illnesses. And while I am still battling and fighting fiercely — every day — to find wellness once again, I hope and pray to learn from this trying and challenging journey. I will continue to lean on my faith, my adoring husband, my family and my friends.
This is my life. Above all, I am thankful!
I am a Lyme disease warrior.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Former healthcare executive and avid athlete, Terry’s life was abruptly altered by illness at the age of 33. Twenty years later, she remains mostly bed-bound — fiercely negotiating the debilitating affects of late-stage Lyme, tick-borne disease and multitude of chronic illnesses. An occasional blogger and writer, Terry shares her personal experiences from deep within the realm of a lengthy and challenging illness + healing journey; offering encouragement, support and a sincere sense of “you are not alone”.
terrymmayfield