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 are excerpts from Susan's personal journal entries, dated May 8 and 9, 2016 after a relapse and reinfection of late-stage, chronic Lyme disease.
May 8, 2016
I’ve fallen back into a dark place, and I don’t know how to get myself out of it this time. I thought it was just the gloomy weather at first—the non-stop rain that landed me in bed the past two weeks. Then I thought it was just a herx.
But the fevers that we thought were my immune system kicking back into gear haven’t let up, and the swollen glands, the new migraines, the burning sensations in my feet, the abdominal pain and hoarse voice and agitation kept telling me there was something else, that this was something new.
I’m going to start treating for a new co-infection starting tomorrow. We never considered Bartonella the first time around—at least, we never focused enough on it to treat for it—but with these new symptoms and the way I’ve been feeling, I know this isn’t something familiar, I know this isn’t just the relapse, just the Lyme.
I’m scared. I’m scared because I know I’m going to get worse again before I get better, and I don’t know if I can handle it again. God, I don’t know if I can go through this a third time. I just want some relief, in whatever way that looks like. I want a reason to smile, a reason to look forward to life again.
I know this depression is a part of the illness, just like I know the anger is—I’m getting easily frustrated and I keep lashing out at the people I care about. Then the guilt eats away at me because I know they don’t deserve it.
I just can’t handle this pain anymore. I don’t want to handle this pain anymore. I’m too tired to be strong, too tired to keep fighting, too tired to keep believing that one day, something will change because you know what? It’s been four years, and things haven’t changed. Four years of fighting, four years where I never feel relaxed, never feel safe. Four years of trying to be grateful for all that I have—and I am… I’m blessed, truly I am. But I’m so tired. I just can’t do it anymore.
I try to be optimistic. I try to remember all that I have. I try to remember that this disease has changed me in positive ways—that I’m stronger and a better person—but I can’t do it anymore. I can’t do it anymore because I’m so lonely, but I can’t bother my friends because they have their own lives and their own struggles. And my own family has done so much for me—they’ve supported me enough, how do I keep leaning on them? I can’t be this burden anymore—I just can’t. It’s killing me inside, and I don’t know where to put this pain.
I wish I knew what the world wanted from me. I wish I knew why I was still here—because I can’t keep living like this, I can’t. It breaks me time and time again, and I’m afraid that one day I won’t have the strength to put the pieces back together again. I can’t see past tomorrow anymore. I’m suffocating in today.
I need help... I need help...
I need help.
May 9, 2016
It’s seven in the morning, and I’m sitting at my dining room table as I write this, tea brewing on the stove. I can hear the jangle of the dogs’ collars as they wander the yard, mixing with the birds chirping in the ivy outside the window.
I’m calmer today. I cried all night and fell into a dreamless, somewhat fitfull sleep. But when Moxie woke me up, I saw the sun was shining, and I felt…not peace. This isn’t peace, but a serenity that has taken place in my heart. Who knows how long it will stay. Even now, I feel the tremblings of nerves as I think about the errands I have to run, the new medicine I have to take, wondering if I’ll find reprieve at last or if I’ll tumble into a herx reaction of pain and discomfort.
But today is a new day, isn’t it? I survived that, and I can do it again.
My mind is fuzzy this morning—what was I going to say? Nothing so profound, I’m sure, but something, something…
Oh, yes. Life. Life feels like it keeps breaking me and I have to put myself back together each time. And while I feel better this morning, I can’t help but wonder how many more times I’ll have nights like that, how many more times this can go on.
I don’t know what happened to get me here today, to this place of calmness. Maybe it was my pleas, my prayers. Maybe it was that bottom I had to find before I could crawl my way back up. Maybe it’s just that you can’t listen to what your mind tells you in the darkest part of night.
Maybe I just had to keep holding on for a little while longer for everything to change.
All I know is—I can’t keep going back there. I can’t live in that place of helplessness and despair and desperation. But I don’t know how to stay here, either—in the calm. In the light. In the love.
I feel so full of love, and yet empty somehow. How is that possible? I feel so full of love and gratitude for the world, for my family and friends, for my animals, for my life, but I feel so numb inside, like the coffer is empty, and I don’t know how to fill it back up.
Take from the Universe, I hear a voice say. Giving and receiving. When you don’t feel that love returned from outside forces, look within. You are the Universe, darling. Fill it up yourself. Take from the infinite well and fill up your heart.
This is where healing begins.
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