I Promise I'm Not On Drugs: My POTS Diagnosis Story, Part One
I couldn't talk to my friends, couldn't attend class, couldn't go to the cafeteria without triggering a series of conscious-but-paralyzed seizures which took me hours to recover from. I was constantly weak and shaky and absolutely terrified of the next seizure which I knew was inevitable. I became disabled to the point that sitting up in my own bed was a bad idea. I postponed trips from my dorm room to the bathroom as long as I possibly could, afraid that I would hit the floor before reaching the end of the hallway.
Then a day came when I felt somewhat better. The whole day had passed without any seizures. I felt as though I had been a prisoner in my own bed for ages, and I was dying to go for a short walk outside with my boyfriend Josh. So for the first time since everything started falling apart, we spent quality time together. We talked a lot and laughed a bit and I probably cried a ton. I asked Josh if he even still wanted to date me, since the version of me that he chose to date three weeks earlier had been a normal, healthy girl. He hadn't signed up to care for this new girl with a mysterious, debilitating illness. But Josh assured me that even if my doctors discovered a fatal disease within my body, he wasn't planning to walk away from me. Every word my boyfriend spoke that night gave me butterflies. Even though I dared not speak the words, I felt myself falling in love just a tiny bit.
When we returned to campus, I was a bit fatigued. I should have returned to my room, but I missed spending time with my friends. So my boyfriend and I decided to hang out in the campus coffee shop for a short while before bed. But of course, after a few minutes I found myself sinking into a seizure. My boyfriend was not overly alarmed; we had both started to grow accustomed to my strange seizures. He discreetly touched my hand a bit to offer comfort (students of opposite sex were not allowed to hold hands on campus) and waited for me to wake up. After a few minutes, I sat up and continued joking around with my friends. But then I succumbed to another seizure, and then another, and another. I eventually lost the ability to sit up between seizures, being too quickly dragged into the next one. My boyfriend grew anxious and decided to text my brother (who was a Resident Assistant on campus) for help.
By the time my brother reached the coffee shop, my seizures had grown longer and more intense. My friends could no longer rouse me for more than a few seconds between each seizure.
I started panicking when I realized that the seizures were growing worse than ever before. Will I ever wake up again? The thought crossed my mind that I could sink into a coma that night and never be able to move or speak again. Why is this happening? What's wrong with me? Why, God, why? I kept panicking more and more until I forgot how to breathe, forgot how to think, forgot how to do anything.
At this point, my memories from that night turn into a hazy soup mixed with a few intense moments which will forever be seared into my brain. I don't remember exactly what happened, but I do remember how I felt.
By the time my brother reached the coffee shop, my seizures had grown longer and more intense. My friends could no longer rouse me for more than a few seconds between each seizure.
I started panicking when I realized that the seizures were growing worse than ever before. Will I ever wake up again? The thought crossed my mind that I could sink into a coma that night and never be able to move or speak again. Why is this happening? What's wrong with me? Why, God, why? I kept panicking more and more until I forgot how to breathe, forgot how to think, forgot how to do anything.
At this point, my memories from that night turn into a hazy soup mixed with a few intense moments which will forever be seared into my brain. I don't remember exactly what happened, but I do remember how I felt.
Weak. I know for sure that I felt weak. And helpless. More helpless than I ever thought possible.
Paralyzed. As my brother lifted me from the couch into a wheelchair, I felt the fullness of my body's limpness. My hands were rocks weighing my arms toward the ground. My legs had been reduced to noodles filled with sand. I tried to curl up into my brother's arms as he lifted me, but the dead weight of my body simply wouldn't listen.
Hands. Hands kept me from slipping to the floor, kept my head safe.
Confusion. Where was I? I opened my eyes as the seizure passed. I was in the old freight elevator, the only way to reach my room in a wheelchair. Wow, there's a lot of people here.
"Hi, guys." I sheepishly grinned at all the concerned faces. "Don't worry, I'm fine."
Not again. Another seizure. Why won't they stop? What's wrong with me? Am I dying? I just want this to stop. I just want to be normal.
"Bonjé, can you hear me? Can you see me? Hey, there you are! What did you do tonight? Josh is pretty cute, isn't he?" Everyone kept asking me questions, kept trying to prompt words from my lips. Kept trying to keep me responsive. "Can you relax your hand?"
My hand. Something's wrong with my hand. "I can't move my hand." I looked up at my brother with terror in my eyes. My hand was frozen; my fingers formed a grotesque claw. This is the weirdest feeling in the world. I stared at my hand. I kept telling it to move, to soften, but the message from my brain lost its path within my body.
Then I began to notice that my legs weren't listening either. My knees bobbed up and down more fervently than I had ever thought possible. I couldn't stop the shaking; all I could do was watch as my body fell apart. At least the seizures had stopped for a time. Leaving the coffee shop must have helped. I was able to smile sheepishly again at the faces around me. Able to laugh when they prodded me about my romantic walk with Josh. I was still paralyzed, but at least I could breathe normally.
My brother lifted me from the wheelchair to my bed.
Exhausted. I honestly don't know if I slipped into more seizures, or immediately slipped into blissful sleep.
When I woke, control of my body had returned. My legs were my own again. My hand held only a nagging pain which faded shortly.
Only one wound remained:
Within my mind, I held the terror of an unknown illness that was swiftly destroying my life.
__________________________
Continue reading my POTS diagnosis story here:
Leaving My Health Behind in the Dust: My POTS Diagnosis Story, Part Three
My Illness Forced Me to Accept Help: My POTS Diagnosis Story, Part Four
Dear Doctors, Please Stop Telling Me I'm Pregnant: My POTS Diagnosis Story, Part Five
My Symptoms are More than Just Mental Illness: My POTS Diagnosis Story, Part Six
Finally, An Answer: My POTS Diagnosis Story, Part Seven
Until next week: stay strong, keep warm, and appreciate the capabilities that God has given you this day.
I'm praying for you.
Bonjé Gioja
Paralyzed. As my brother lifted me from the couch into a wheelchair, I felt the fullness of my body's limpness. My hands were rocks weighing my arms toward the ground. My legs had been reduced to noodles filled with sand. I tried to curl up into my brother's arms as he lifted me, but the dead weight of my body simply wouldn't listen.
Hands. Hands kept me from slipping to the floor, kept my head safe.
Confusion. Where was I? I opened my eyes as the seizure passed. I was in the old freight elevator, the only way to reach my room in a wheelchair. Wow, there's a lot of people here.
"Hi, guys." I sheepishly grinned at all the concerned faces. "Don't worry, I'm fine."
Not again. Another seizure. Why won't they stop? What's wrong with me? Am I dying? I just want this to stop. I just want to be normal.
"Bonjé, can you hear me? Can you see me? Hey, there you are! What did you do tonight? Josh is pretty cute, isn't he?" Everyone kept asking me questions, kept trying to prompt words from my lips. Kept trying to keep me responsive. "Can you relax your hand?"
Then I began to notice that my legs weren't listening either. My knees bobbed up and down more fervently than I had ever thought possible. I couldn't stop the shaking; all I could do was watch as my body fell apart. At least the seizures had stopped for a time. Leaving the coffee shop must have helped. I was able to smile sheepishly again at the faces around me. Able to laugh when they prodded me about my romantic walk with Josh. I was still paralyzed, but at least I could breathe normally.
My brother lifted me from the wheelchair to my bed.
Exhausted. I honestly don't know if I slipped into more seizures, or immediately slipped into blissful sleep.
When I woke, control of my body had returned. My legs were my own again. My hand held only a nagging pain which faded shortly.
Only one wound remained:
Within my mind, I held the terror of an unknown illness that was swiftly destroying my life.
__________________________
Continue reading my POTS diagnosis story here:
Leaving My Health Behind in the Dust: My POTS Diagnosis Story, Part Three
My Illness Forced Me to Accept Help: My POTS Diagnosis Story, Part Four
Dear Doctors, Please Stop Telling Me I'm Pregnant: My POTS Diagnosis Story, Part Five
My Symptoms are More than Just Mental Illness: My POTS Diagnosis Story, Part Six
Finally, An Answer: My POTS Diagnosis Story, Part Seven
Until next week: stay strong, keep warm, and appreciate the capabilities that God has given you this day.
I'm praying for you.
Bonjé Gioja
P.S. What's the most terrifying thing that ever happened to your body? Have you ever felt utterly helpless like I did? Was it hard for you to accept help from others? Leave a comment down below!
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Hello there! Stumbled onto your blog via Facebook. This is random, but did your doctors ever consider a diagnosis of cataplexy? It just sounds really similar (can't move but still conscious, episodes triggered by strong emotions and sleep deprivation, etc.)
ReplyDeleteHope you're doing better now! Thank you for sharing your story, I know it takes a lot of strength and vulnerability, but it's awesome of you to put it out there so it can help others. (Also, you are a great writer, this is super well-written!)
Hi! I totally understand your line of thinking. Cataplexy was actually one of the first suggestions I got (from the nice doctor in part 3 of my story). The doctor who suggested it didn't have the medical experience to know whether or not it entirely fit my condition, though. I've never heard any of my other doctors suggest cataplexy, so I don't think it is a well-known condition. We thoroughly researched cataplexy online, and found that most people with cataplexy lose consciousness as well. There is something called isolated cataplexy, though, in which consciousness is retained. My dad actually found a research paper online which a doctor had written regarding isolated cataplexy. Then my dad sort of stalked the author of the paper a bit and found his contact information. The author was a really nice retired doctor from Chicago who had spent years studying cataplexy. But after my dad and the doctor talked my case over, they decided that my condition was most likely something else. I had a lot of extra symptoms that didn't fit under the diagnosis of cataplexy, and then I didn't have some of the main symptoms which were characteristic of cataplexy (for example, my seizures often happened for no reason, without any sort of triggering event).
DeleteThanks for your encouragement! :D It was definitely hard for me to share things like this at first. But after dealing with my struggles alone for years, I wanted to try to be an encouraging voice to others like me who deal with similar issues. I'm definitely doing a lot better now, but each day still holds battles to some extent. So I've learned to adapt in a lot of situations!
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