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The Truth About Living With Late Stage Lyme Disease

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Many people have been asking how I am doing lately. And the short answer is, I’m fine. But the truth, the long answer, is actually quite complicated. I am writing this because there are others in the same situation as me. And we don’t really know how to answer this question. And sometimes, it makes people feel uncomfortable to even hear the response. But this is the truth about living with late stage chronic neurological Lyme disease.

Most mornings I wake up and feel the best. I have many symptoms on a daily basis. Most days I have a constant brain fog and the feeling of dizziness or movement. Sometimes I am incredibly exhausted and fatigued. Some days I can’t even lift my head off the pillow. But other days, I can move around more. Maybe take a trip to the pharmacy; sometimes the grocery store. But once my body starts moving and doing activities, my body and brain can only handle so much. And most days I usually push myself. Because I am so determined not to be bed bound.

My brain can only handle so much. And my neurological symptoms are terrible on a daily basis. You might not realize it by looking at me. I look fine. I don’t look sick. And on days I decide to put makeup on, I really don’t look sick. This is where it’s tricky for a lot of people. Because they see me out, having conversations, meeting and talking with people, having a glass of wine, they think I am normal, I am fine, I am healthy. But it’s really the complete opposite.

I force myself to do those activities. Because I need normalcy. I need to get back to my old self and life. I want nothing else in this world but to be healthy. So there are some days, you may see me out and about, looking perfectly healthy. But you don’t see the days I am bed bound. The days I am seizing in bed. The days I cannot get words out and cannot complete sentences or open my eyes. The days my husband has to physically carry me to the bathroom or wheel me around because I am too weak and fatigued to move on my own. This is the part about chronic illness that is very scary and misconstrued.

We want to be healthy and be able to go about our daily lives like we used to. But many things have changed over the years. And adapting to those things is extremely hard because you don’t want to let go of who you once were and all of the things you used to do.

So yes, I am still sick. I have neurological Lyme disease, Bartonella, Babesia, Anaplasma, mycoplasma pneumoniae ehrlichia, Brucella, cytomegalovirus, Epstein–Barr virus, autonomic dysfunction, postural orthostatic tachycardia syndrome….is that all? And for the most part, they are all invisible illnesses. So please try and understand if I don’t text you back immediately. Or if I cancel plans at the last minute. I am doing everything in my power to get better. For the past six years, every day of my life, I have been fighting. And I won’t stop until I reach a point where I can really say I have reached remission.

Getty Image by Elena_Bessonova

Originally published: March 3, 2018
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