Laura was in the middle of her masters degree when Lyme hit. She was 23, single, and a full-time student at the University of Minnesota. Her masters degree would have been in Environmental Health with a concentration in infectious diseases.
She was sick for about 8 months before she finally had to quit her part time job to focus on school. “For a long time I tried to keep my studies up. I dropped classes and repeated them the next semester. I would have my parents drive me to classes. But after a couple years of this I gave up and realized I just needed to focus on my health.” Since then, she has moved in with her parents. She stopped dating because she has been too sick, and honestly hasn’t felt well enough to even think dating sounds fun.
In the Beginning
It was Labor Day weekend 2008 when she really started to feel it. She visited the doctor in search of answers, and was treated like a hypochondriac. She told him she had a strange tingling in her toes and heels, and he told her to, “come back when it’s up to your knee.”
Her life took a slow and steady decline from there for the next three months. She was tired, dizzy, and suffered from a low immune system. Ear infections, allergies, and migraines ensued. Her health began to decline much more rapidly, she describes this as feeling “like rolling down the hill before dropping off the cliff.” She felt scared, and out of control. Why wouldn’t you? With no answers and no end in sight, it would be hard to not feel like your life is out of your control.
Too Sick to Text Back
Because of the severity of her symptoms, Laura spends most days alone. She has lost almost all of her friends because she was too sick to talk on the phone or text people back.
As she puts it, “When I could, I would tell people how much those voicemails and texts meant. I’ve found, though, that few friendships can survive one-sided for that long.” The friends she’s been able to maintain are the more flexible ones. People who are willing to drop in at a moment’s notice when she’s feeling up to it and don’t get their feelings hurt when she isn’t feeling well enough are the ones who are able to stick around. Her friends who need to make concrete plans in advance had a hard time coping.
The Trouble With Dating
Laura hasn’t been on a date in 10 years. She’s 35 now, and feels that the time for kids is quickly diminishing. As she scrolls through Facebook, she finds herself feeling jealous of old friends. Seeing their happy lives with their spouses and children reminds her of the things she may never have. She doesn’t like feeling this way, and would much rather be happy for them, but it’s hard to not be angry about the situation she’s been forced into.
For the most part, she spends her time inside, with her parents, or at doctor’s offices. Too much noise or stimulus is draining, and she often has to remove herself from chaotic or loud situations. Even on her good days, in between activities, she takes time to lay in the quiet to rejuvenate.
On her bad days, she may never leave her bed. She has replaced old hobbies with new, quieter ones, like gardening and reading. She finds it much easier to feel well at their cabin on Rainy Lake where they stay in the summers. The quieter atmosphere is a safe haven from life in the city.
Managing the Pain
Pain management has been an interesting road for her. Her first doctor gave her Vicodin at her first sign of pain. She then became dependent on opiates for pain management. Last fall, she had a pulmonary embolism and had to start taking blood thinners, and stop taking NSAIDS. She now spends a lot more time in unmanaged pain. Pain, that, “keeps me from doing things, and for which Tylenol is just a cruel joke.”
Wishing for Routine
Trying to have a daily routine is a thing of the past for Laura. The only thing that she strives to make happen every day, is getting to sleep at a decent time. Her sleep is pretty erratic, and she sometimes doesn’t fall asleep until 9:30 am. Having this kind of sleep schedule makes it almost impossible to make any kind of plans.
Feeling Like a Burden
Laura feels guilty for not being able to perform daily household chores. Her mom still does her laundry, cooks, and cleans the house. Accepting so much help from her parents is hard for Laura. “ I’m always feeling guilty and like a burden.” Compared to the active lifestyle she used to lead, this is a big contrast. Going from runs and long bike rides, to not being able to walk to the end of the street or perform your own chores is a devastating change.
Lyme took away her educational aspirations, self-sustainability, physical fitness, and love life, but that doesn’t mean there isn’t still hope.
Lauren’s Advice to You
To others with Lyme or chronic illness, Lauren advises that you should keep looking until you find the right doctor. Finding someone who believes you and has your best interest in mind is priceless. She also urges Lymies to advocate for themselves with doctors because “so often you just don’t feel good enough to explain to the doctor how sick you really are, and it’s so easy to downplay the severity. It’s almost instinctual, when the doctor asks, ‘how are you’ to respond with, ‘I’m ok.’”Don’t give up on yourself. You are worth the proper care and treatment. Stand up for yourself and demand what you are due.
Advice That Helped Her
The best piece of advice that Lauren received from others was about the herx reaction. “I guess the best advice I was given, was being told that I would get worse before I got better because of the herxing. It took a couple years of trying different treatments, supplements and diet changes before I saw any improvement. Even then, the improvement is so slow, it’s only looking back a year that I notice I can do something now I couldn’t a year ago.” Just because improvement is slow, doesn’t mean it’s not worth pursuing.
Patience in Healing
Lauren’s journey has taught us to be patient with ourselves. Just because we don’t notice the improvements we’re making doesn’t mean we haven’t made any. Stick up for yourself, allow others to take care of you, and most importantly, don’t give up hope.
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