Some days I am horrified by the stories of Lyme Disease. I belong to a couple Facebook support groups for people living with Lyme like myself. And sometimes it's just too much, and I have to walk away. Lyme is so ugly, and what it does people's mental health is just awful.
Lyme doesn't take pity.
“I’ve shit my pants so many times in so many unfortunate situations.“
I read that this morning on one of the groups and I cringed. I know that fear and thankfully have never had it happen to me. But there are moments when I don't think I'll leave the house because I'm not feeling well and I don't want to be caught out.
Unfortunately, many Lyme online groups only focus on the ugly and scary parts of living and fail to motivate people to live with a good mentality.
People can exhibit Lyme disease symptoms in the GI tract. These include abdominal pain, heartburn, nausea, vomiting, diarrhea, and blood in the stool. Gastrointestinal Lyme disease may mimic colitis or Crohn’s disease.
Lyme makes you question everything.
“I have pain in my head that is throbbing. Is this a Herx or maybe the disease has spread to my brain?”
When is a headache not just a headache? When you are so afraid of your diagnosis that everything becomes something so much bigger than simplicity.
I won't lie. There have been moments that I've wondered if that leg cramp that went on for hours might have been a blood clot. I've feared the tremors that went through my body for years were actually related to a brain tumor. And when I am around people with Lyme (online), everything seems to be a direct result of the disease, the Herx, or the treatments OR a coinfection. SIGH not everything is related.
The ugly truth is that everyone has moments of just not feeling well, with or without Lyme disease. EVERYONE gets headaches, aches and pains, and that's life. But when you are addicted to searching through Lyme boards for the answer as to why you have a pimple, a runny nose, or can't remember the name of the neighbor's cat, you will only find others who are also afraid and shouting the connection to all life's problems is Lyme disease. The connection is Life.
Lyme makes you think about dying.
“She's a rock star. She lived her life challenging everything, exploring the world, living life on her terms. I want to get to the end of my life and be half as exciting as she was.”
A friend of mine is sitting with her dying Aunt today. When we talked about the life her Aunt had, the challenge of living with Cancer, and the way her aunt faced her diagnosis, I found myself wondering what they will say about me when I pass.
I've been unable to get out of bed a few times in my lifetime war against Lyme. I've been so sick that I could barely walk across my room to go to the bathroom alone. In those moments I thought about dying often. I thought about the life that I wanted to have and grieved for the death of the person I wanted to be.
It was hard to see the good life I was still in the middle of when I was so depressed, scared, and weak.
Sometimes I think about dying even when I'm feeling okay. I know that every day I'm given this chance to have a beautiful life with my family, I just have to accept that sometimes I walk a little slower.
When I go, I don't think anyone will call me a rock star. But I hope that many will say that I was a good Mom. Maybe they will say I am a challenging friend or a person who understood life from many different angles. I don't want them to say I was a slave to an ugly disease.
Lyme is so ugly.
One of the saddest parts of living with Lyme is knowing that there is no cure, people don't talk about it and bring support to fight for a cure like they do popular illnesses. Lyme strips away the confidence of its victims by reminding them day to day that this hell is the one they are stuck with and there will be no “Lyme Free for xxx days or years”
Lyme taunts you with shitting your pants, losing your things, and making you afraid of what everyone else thinks is normal. Every time you take charge, start eating clean and rise up to challenge Lyme right in the face, it will fight back with making you think that you are dying. Lyme sends chemicals to your brain during a herx that makes you honestly believe that you are dying so that you will stop whatever thing you are doing and go back to drowning slowly in your fears.
Lyme is Depression and Anxiety who have been given permission to rip out your hair, destroy your liver, and run madly through your body so you are too weak to fight back.
I wish I could end this with something uplifting and sweet. But Lyme is ugly.