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Lyme Awareness Month, Day Two: Losing Yourself to Lyme Disease

May is Lyme Awareness Month--a month dedicated to educating the public on all facets of Lyme disease and other tick-borne illnesses. We thank all of the patients, advocates, and Lyme organizations for their dedication in helping to spread the word and save lives. Here at LymeBrave Foundation, we're taking an unfiltered look at what it's like living with this chronic illness by opening up our journals and sharing the highs and lows of life with Lyme. Join us for our 2018 awareness campaign by helping to #shareyourstory. Contact us to find out how!

Editor's Note: The following appeared as a blog post on Susan's personal website, dated August 26, 2012--five months after her official diagnosis of Lyme disease.

It’s eight o’clock in the morning and I’m curled up beneath a blanket with Riley to my left, a scented candle flickering on my right, and a bowl of ice cream in my lap. I’m supposed to be on a strict no sugar, limited carb plan — the Lyme feeds on the sugar — but illness be damned, I’m finding comfort wherever I can this morning.

I’ve been up since 4am, waiting for one of three things to happen: for the vivid dreams to fade back into wherever dreams go when they’re forgotten; to silence the thoughts of love and loss and forfeiture that swim through my mind; to find peace and healing as I fall back asleep.

Sleep is supposed to be healing. They say that when we get a real night’s sleep — the kind where you wake up refreshed and clear-minded — that it restores whatever damage had been done to the body the day before.

You don’t sleep with Lyme Disease. Actually, more accurately, you don’t sleep with it’s co-infection of Babesia. Oh, you “sleep” all the time — you nap 3 or 4 times a day because the fatigue is so great that you find yourself stuttering your words and the only way to fight the fog in your mind is to rest awhile, or you sleep to try to escape the pain that runs through your muscles and joints and makes it difficult to function, never mind the times when it’s hard to walk, causing you to shuffle so that you feel like you’re so much older than your almost-29 years.

Sometimes you’re lucky to sleep through the night while only waking up once around the 3am mark, always that 3am mark. But it’s not real sleep; it’s not that restorative, healing sleep that your body and mind so desperately crave.

Not yet, at least.

I wish my mind would heal. More than the tingling in my hands and the pain in my legs, I wish that my mind would somehow stop with the fog and the anxiety and the depression that coincides with such a lonely, debilitating disease.

Tuesday marked month 5 of treatment, and looking back, I can see how the good days have begun to outnumber the bad. I’ve had greater mobility and increased energy, able to work a few hours, take care of Riley and Mikey, and even do dishes or laundry or cook for myself. And when I jump in my parents’ pool for some water therapy, I feel like myself — my true self, like this illness is forgotten and I can laugh and play and move with ease and relief.

My doctor was surprised at how well I was doing, saying they usually don’t see improvement, that patients don’t see much of a difference themselves, until the six-month mark. But I knew I was pushing myself, often far beyond what I should for fear of relapses, to get better. There’s nothing I want more than to feel alive again.

But relapses will happen, as I noticed these past two weeks. Herxes — that ugly reaction when the germs are dying off and releasing toxins that intensify your symptoms — are cyclical and unavoidable. And no matter how much I may will myself better, no matter how many prayers I whisper or scream, I’m not in control. Not really, anyway, not like I want to be.

These past two weeks, every symptom has returned in full force: the neuropathy, the inconceivable pain, the insomnia, the fatigue, the pale, ashen face that even coworkers have noticed, devoid of any rosy glow, eyes having lost their usual sparkle…It’s all back.

And the mood swings. The anger. The depression. The anxiety.

It’s this that I fear the most.

It’s this that I’m struggling the hardest to control.

It’s this that’s the hardest to fight.

It’s all part of the Lyme Disease and the Babesia, and while for so long I thought it was just a part of who I am — believing my earlier panic disorder to be a product of my fear of change — I’ve since learned that Encephalitis and psychiatric disorders (including what’s described as Lyme Rage) are a key component to this illness, indicated as Psychiatric Lyme. Reading, researching, and listening to the horror stories that my doctor and his wife tell me about their patients, who are so much worse off than I am, I’m both relieved and terrified. Could that have been me with the paranoia and hallucinations? Could the depression and anxiety have gotten so bad that I’m afraid to leave the house, my bed?

It could have been. I was almost there, once, when I was in high school and so anxious about keeping my family safe that I begged my parents not to go to work and leave me. It almost happened two weeks ago, when my dad picked me up from work because I was too fatigued and pained to drive, when I begged him not to run his errands, making him promise to go straight home after taking me home instead.

The rational side of me now knows that it’s this disease wreaking havoc on my neurological system, the Lyme bacteria fighting to stay alive or dying off and releasing their toxins that make things worse before they get better; this side of me knows that there’s nothing to be afraid of, that I can’t control what happens in life anymore than I can control the people in my life.

But the dread begins to build and I find myself wanting nothing more than to cocoon my loved ones and protect them.

The hardest part of this whole illness has been reconciling the fact that this isn’t me. No, this isn’t me. I know who I am — perhaps overly passive and non-confrontational, patient and kind, bubbly and naturally optimistic…

This is who I am. This is who I am in my heart and my mind and at my very core; it’s who I’ve always been.

But this deep depression that seeps into my heart, these dreams that linger long after I’ve awakened, and these thoughts that haunt me in the middle of the night, saying “I’m alone, I’ll always be alone, that I have nothing left to fight with anymore…” It’s this that scares me most. Because of all the symptoms, it’s these thoughts that are the most powerful, the most destructive.

I don’t want to fight anymore.

It’s exhausting and disheartening and so hard to constantly fight a daily battle whose end seems so far away.

But I’m not going to give up, either.

Because I know that the people I love will fight for me when I’m too weak, but I’m trying to be strong enough now to carry on through.

Because I know that 3am will always pass into morning and the sun will always rise.

Because I dream of life and love and know those things will, in time, return to me.

Because I dream that one day soon, life will return to me.

- - - Will you show the world you're LymeBrave and join us for our Lyme Awareness Month campaign? Contact us at to find out how you can help#shareyourstory!

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