*Originally published 1/12/18*
I withdrew from school yesterday. Sadly, if you recall, this is not the first spring semester I will be missing of my college experience. Last time, I was at Salisbury, losing all cognitive function, unable to eat, and living in constant agonizing pain. Now, I am just getting paralyzed all the time. I still have some other symptoms, like pain and fatigue, but they are manageable. If this paralysis was not happening, I actually believe I would be pretty close to the healthiest I have been in the past six years.
My first bout of paralysis happened 3 years ago, coming home from the state football game. Then, it would come every once in a while. It came once a week for a little while, then a few times a month. I would go months with no paralysis, too. However, since the beginning of November, I have only had 3 days where I have had no paralysis episodes. I average at least 4 episodes a day, and those are good days. I have had a few days when I have been paralyzed more than not.
Now I say paralysis, but I can still feel touch. I can no longer move body parts; it is more like my body gets frozen. Sometimes I can’t move my legs, sometimes I can’t move my arms, but normally I can’t move anything, including my face. It’s terrifying, but sadly, I’m getting used to it. Half the time I don’t tell people I’m paralyzed until I need to get out of it. In the past, when I would get paralyzed I would freak out. The second I couldn’t move anymore I would call my mom and start crying and panicking. Now, I only call when I need to be readjusted or go to the bathroom.
Luckily, we have a way of getting me out of the paralysis. When I got paralyzed at the acupuncturist, she tried to get me out of it, and it worked. There is a spot on the bottom of my foot that when stuck with an acupuncture needle, somehow released me from the paralysis.
It mainly happened when I am lying in bed, but sometimes it happens when I am standing or sitting, or even on the potty. I can also feel pain. And there is a lot of it. A lot of times my muscles are contracting when I’m paralyzed, this when I come out of it, I feel like I’ve run a marathon. Also, when I’m not paralyzed I am normally exceptionally weak and this hurts, too. Some days I would rather be paralyzed than deal with the weakness.
From this paralysis, I have lost most of my independence. I no longer can drive. I now must rely on everyone to get anywhere. I cannot be left alone; I have to have someone with me while I nanny my nephew. I cannot bathe or sauna without giving warning, so people know to check on me. I have acupuncture needles everywhere because we never know where it will happen.
We used to think it was my Lyme causing this, but even with antibiotics, nothing changed. I went to two neurologists within the past six months who did numerous studies on me, each coming back normal. They kept giving me medicines for disorders they thought I had, but every medicine made my symptoms a thousand times worse. Finally, the neurologist came to the conclusion that I have conversion disorder.
Conversion disorder is not well known and probably not very often taken seriously. CD is basically neurological symptoms stemming from a reaction to stressor trauma, usually. I was relieved that it was not something major neurologically wrong with me, but I was pretty disappointed when I found out this was my diagnosis. I was disappointed in myself for not being able to control my stress and letting it take over my body. I was also scared that people would think I am crazy, or worse, “faking it.” But then I started researching the disorder.
On the Mayo clinic’s website it states, “ the symptoms are real and cause significant distress or problems functioning .” They also iterate that people “can't intentionally produce or control [their] symptoms.” This is not something I can control, it is a mechanism my body has created to protect itself from all the stress, physical and metal, it has gone through.
I have had a chronic disease for the last 6 years of my life- I have been sick for 30% of my life. My body is worn and torn from all the tests and medications, not to mention all the things I have had to face in this time span-from missing school, to losing relationships, to having my life turned upside down time and time again by Lyme disease.
So, yeah, my body has been stressed, I have been stressed, and my body has converted stress into paralysis. I have Chronic Lyme disease that has led to conversion disorder. Hopefully, I can retrain my brain and body how to properly handle stress and stop the episodes, but it won’t be easy. But until then, I keep moseying on down the road… in a car…that someone else is driving…but still , we move forward.
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