825 Days – 260 Weeks – 60 Months – 5 Years

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May is Lyme Disease Awareness Month.

Today is the eve of the 5th May that I’ve been different. When I was sixteen, I was shoved into a black hole of chronic illness, and each year since I’ve been desperately clawing my way out. In some ways, this time has passed quickly, as all time seems to do. But back in the years that I held on to normality by a thread, the time seemed to barely move.

The days were terrible. The hours ticked by when I was awake and alone. The nights were terrible. As my fellow Lymies know – there’s not much sleeping going on at night. As exhausted as I felt, my body felt jittery and my brain buzzed all the time. Between not sleeping and feeling like my insides were plugged into an electric socket, there was the stupor that I was in most of the time. Teenagers who spend 95% of their life at home in bed don’t have much of a social life.

Thinking of that sick, tired and lonely girl makes my heart hurt.

It scares me to think about how I used to be. I worry that I will regress, but at this moment I estimate that I am 60-75% recovered. I’m doing things that a few years ago I never would have dreamed!

I am resilient; I am strong; I am determined; I am willing to work even harder each day than the day before; and I am grateful to my God for answering my prayers to allow me to do so.

Late-stage Lyme patients, like me, are forever changed. I can never again live life without considering the consequences of the smallest actions… I will never be able to eat without thought or care; stay up too late; live without planning my time to the smallest detail to allow for unexpected bad hours or days; shop and buy food or products without studying the origin or ingredients; travel without my kit of emergency supplies to treat hives, allergies, bites, sleeplessness, headaches, constipation/diarrhea, or any other of my numerous issues known to pop up at the worst times. I worry about being able to have children, and if I do have them, I worry that I won’t be able to take care of them. I have to be sure the air I breathe is free of allergens and molds and fragrances, and I should never drink caffeine or alcohol. Compared to other 22-year-olds, I’m a party pooper (most of the time). HOWEVER… I AM LIVING LIFE AND I AM GRATEFUL.

If you are new to this world of chronic illness and are deep in the depths of your black hole, your time will pass also. I remember reading about people who worked for 5 years, 10 years, 20 years to get well, and this seemed IMPOSSIBLE to me! How could I live the way I was for that long??? Well, you can – you will – you must. Time will pass and it may as well pass with your brain believing that one day, you too will claw your way out of the darkness, back into life. Life will be changed, but you will be glad of it – goodness and mercy will follow you into a life full of meaning and purpose.

If you are an outsider to this sick world so many of us live in, thank you for taking the time to take a look inside ours. It’s different – sad and scary, but the happy moments bring us the most pure kind of joy that I would bet most “healthy” people don’t ever experience. Thank you for your empathy, but mostly, thank you for educating yourself and spreading the word to others who may need it. The Lyme life is a lonely one, and every healthy person made aware can hopefully do a little something to help ease that feeling for someone who needs it.

May is Lyme Disease Awareness Month.

Follow me on Instagram @lymeliferevealed for my posts each day.

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