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Story 7

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

Lyme and the co-infection Babesia, have completely changed my life.  Before Lyme, I was one of those people in perpetual motion. I loved my job, my hobbies – my life!  Work was nourishment to me – whether in the office or at home gardening, renovating our 270 year old home (purchased 2 years before I got sick), or helping family.  Now I am severely limited physically – can’t stand or walk for more than 5 minutes, and can’t sit upright for more than 30 minutes without excruciating pain.  The pain never relents, and affects nearly every muscle and joint in my body. I have lost all strength and stamina to do even simple tasks.  I can no longer think.  I can no longer read a book.  I can barely make it through a news article without the feeling my head will explode.  I used to write business plans!  I could research an entire industry in two weeks for background, and now I can’t remember a conversation I had a few hours ago!

It took 3.5 years to get diagnosed with Lyme, and another 5 years of unsuccessful treatments.  I have seen 35 doctors in total in these 8 years, many outside of insurance.  We estimate that, so far, this disease has cost us over half a million dollars in lost wages and out of pocket expense.  Our dreams have been robbed.  No travel, no afternoons on the beach with the backgammon board (we live on Cape Ann, MA), no DIY projects on our lovely home that still needs some TLC to preserve it, no kayaking, no hikes in the woods, no COOKING (I was a gourmet cook when I could stand long enough to play in the kitchen), no gardening…. and worst of all, I can’t even sleep in my own bed with my husband!  Perhaps the easier question would be, what part of my life has NOT been affected by Lyme?

But I continue to be positive.  As a trained problem solver, I view this as a problem for which I simply have not yet found the answer!  On days when I can think and read, I do research on what is working for others living this nightmare.  I have learned to appreciate all of the gifts I still have, rather than focus on what I have lost.  Love and laughter are the only true balms that help, and I have both every day.  Not a person alive is luckier than I am, with tremendous love and support, and that is what keeps me going.  My wish is that everyone in the midst of this hell, had those blessings, too!

What inspires you?

I find the greatest inspiration from the tremendous human spirit I have come to know in Lyme support groups on social media.  Compassion, kindness, and true caring are abundant.  That fighting spirit that keeps people searching for answers, as they grasp hope with both hands and try to understand why there is so little help for so many seriously ill and suffering people. Perhaps it is those who suffer most and truly understand life-altering illness, who gain wisdom and insights that healthy people take longer to acquire, or simply miss altogether.   It would be impossible to witness such hope, optimism, and fierce determination and not be inspired!  And for their warrior spirit, kindness and true compassion, these people deserve to be helped!  We matter, despite being more broken than most people can imagine.  We all want to get better, find answers, and fix what is broken in our medical system so we can contribute our gifts to society, rather than burden society with our inability to be productive.  I am also inspired to keep going in the name of those “Lymies” who simply gave the fight everything they had and lost – either taken by complications (yes, Lyme can be fatal), or by taking their own lives (suicide is not uncommon with this disease!).  Life is a precious gift, and too many with tick-borne diseases are taken far too early.  We have lost friends in all age groups – from children to seniors, as a direct result of this hideous disease and they MUST be remembered!

“There is always an answer if you seek it with an open heart and mind. Listen for it…” – Anonymous

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