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Why My ‘Trying’ Looks Different Than Your Trying as I Cope With Chronic Lyme Disease

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Today was a day just like any other. The sun was shining through my window, and as I stretched to see how my body was doing, something felt different. I couldn’t seem to move. My body felt stuck, and I tried multiple times to move just one finger — any finger — it didn’t really matter. My head felt heavy, and I couldn’t breathe.

This is how I feel right before a seizure. 

I woke up crying, not knowing what happened. My right side was in excruciating pain, and I knew I just had another seizure. But today wasn’t just like any other day. I was able to call out for my husband in a barely audible voice to say, “Baby.” He had just enough time to get into the bedroom before I had another one. This one was worse, and I couldn’t talk for a few minutes afterward.

My day — full of beautiful rays shining through the window — is now one lived in bed. 

I’ve had chronic Lyme disease now for about 14 years and have been treated for the past four years. I’ve also had three co-infections, including babesia, and like many other people with Lyme disease, I had multiple different diagnoses before we came across the right one. My doctor had me on oral antibiotics, but those didn’t seem to work, so I’m moving to a PICC line.

My type of Lyme is neurologic, and I have seizures almost daily, along with multiple other physical and neurological symptoms. Sometimes, I shake uncontrollably and lose control of my entire right side, which wouldn’t be a problem if I was a lefty! 

I’m scared. 

I’m scared of what a PICC line is going to do. Will it help while hurting? I’m scared of what these seizures mean and will they be with me for the rest of my life? I’m scared of how long this is going to take. I just got married. I’m almost 30. Will I be able to have kids? 

I’ve lost many friends because of the inability to be “normal.” I don’t blame them because I know if I were in their shoes, I wouldn’t be able to understand either. My family has been frustrated with me and my inability to work or be a contributing part of society. They feel I’m lazy and not trying, or at least that’s how I think they feel.

I want my friends and family to know I am fighting. Every day I wake up not knowing what’s going to happen. In my mind, I’m happy and healthy but soon realize my body has another plan for me. I’m trying, but my “trying” looks different than yours right now. I love you, and I don’t want to lose our relationship, but I can’t be there like others can. I hope you understand. 

I’m not sure how much longer my treatment might take or what it will take out of me, but I know each day brings something new — good or bad — and I promise I’ll try.

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Originally published: June 22, 2016
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