Living with FND

My name is Debbie. I have a neurological disorder so I thought that I would write about it. My illness is called Functional Neurological Disorder. Some of my symptoms are daily migraines, twitching, tingling, body distortion (my arms or legs feel weak), depression, memory loss,  and anxiety.

Looking back over my life, I’ve had these problems longer than I realized. As a child, it felt like I was zoning out for a few minutes. I could hear people and interact but somehow everything seemed unreal.  I would especially feel unreal when I would travel. I was forgetful – always forgetting my homework and books for class even in college – I also would get stomach issues when I would get nervous. I chalked it up to anxiety and ADHD.

Then at the end of 2008, I was in a small car accident. I don’t know if this started my FND getting worse, it was age (though I was only 27) or stress from being in a difficult graduate school program.  I started feeling like I was going to pass out for no reason, I felt extremely anxious, I felt depressed though I had just met the love of my life and had every reason to be happy. I had poor memory and parts of my body felt foreign or the wrong size. As you can imagine, this was TERRIFYING.

It subsided some and then after I broke up with my boyfriend it came back.  This time it was even worse but I pushed through graduate school (though in a different program) Finally, when I reduced stress from the break up, my symptoms started to subside.

In fact, I went into almost complete remission for five years. I was able to be an instructor at a college level.  I LOVED my job.  I still had symptoms and I dreaded this illness would return with an illness but I pushed on.

Then January 1st 2015, I got a text that changed my life in ways I never had fathomed and caused my FND to spiral out of control.  My older sister, Rachel, had a brain tumor. I’d always looked up to Rachel so this affected me abundantly.  I couldn’t deal with the  stress of working, managing a relationship, and my sister being sick.  My body started reacting with rather bizarre symptoms. I went to my doctors.  I got shots daily – torodol just to go to work, but it wasn’t helping.  I seemd to get worse and worse.

My sister’s cancer went into remission.  Things seemed good and I almost though I was well enough to go back to work.  But then in August we went up to my sister’s.  Her cancer was back.  I started to have a decline.  In October, she had a second brain surgery. On that day, I noticed my head was getting more and more stuck  I couldn’t think clearly.  Things got worse and worse.  My body had very strange sensations. I felt out of control.

I wound up in the hospital for three or four days with tremors. Then I went a week later to Brigham and Women’s. I was diagnosed with Functional Neurological Disorder – which means my body sends the wrong signals. For example, when I’m tired, I sweat.

Then I sought treatment for FND at two other hospitals.  After the first hospital, my sister was put on hospice care. That made the FND even worse.  I went to another hospital.  When I left, I had to go directly to my sister’s funeral.  It was like some nightmare.

I’ve been out of the hospital two weeks, but I barely remember the last two months.  Big events have happened.  My younger sister had her bridal shower and her bachelorette party.  Though her bachelorette party was last weekend it feels like it was a dream or never happened.  I know it did.

Much of my days feel dream-like.  I almost feel like I should wake up and find my body restored.

Sadly, I will have this illness the rest of my life, but I have come to understand it better and better.  I’ve come to accept it.

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