I spent my life being cautious. That’s how my dad raised us. Every uneven surface was potential for falling, scarves a choking hazard, sharp furniture corners meant head trauma, glass coffee tables…death traps. Really it’s not all my dad’s fault. I think some of us are just wired to see hazards everywhere we look. My mind works similar to my fathers in that regard.
I’m one of those people always looking behind my back, always keeping people at arm’s length away until I’ve evaluated any potential harm. I wasn’t perfect at it, otherwise I wouldn’t have spent 15 years with a man who I later discovered was an emotional abuser and in some regards physically abusive. I will give more detail on that later, but what I never ever considered was the betrayal of my own body.
In my 30 something years I have always been involved in some form of exercise, running, martial arts, aerobics, strength training etc. And I have even eaten fairly healthy, staying away from past foods and preserved foods as much as socially possible. I even took care of my emotional, spiritual and mental health visiting counselor to deal with things too difficult to deal with on my own. In all accounts I was a healthy woman in my 30 something years. I even looked younger than my age according to friends and family, but about a year and a half ago about a month after a minor car accident, I began to lose control of my body.
I began to feel numbness in my limbs, immense pain in my bones and joints, experienced muscle spasms, muscles locking, difficulty breathing when muscles locked, uncontrollable twitching… Many of these symptoms often showed up at random times, sometimes I had multiples symptoms all at once or just one at a time, but almost always only on my left side only. Because of this over the past year and a half I have been subjected to MRIs, X-rays, EKGs, blood tests, urine tests, neurological tests and so on.
Every single test come back with completely normal results, proving just how healthy I am. Yet my children, my friends, my boyfriend, my family, doctors, nurses and even complete strangers have seen me suffer when my body locks, twitches and twists. Perfect strangers have had to help me walk. My boyfriend has saved my life at least a handful of times pulling my spasms stomached muscles away from my diaphragm, so that I can breath normally.
I remember once doctors and nurses had to convince me (beg me) to sit in a wheelchair because they were terrified I would fall and hurt myself in the hospital after they watched me struggle to walk through the medical doors, my left legs twisting and dragging behind me as I struggled to force my way forward with my right side. Just an hour before at the specialists who took my xrays and found no damage and definitely believed I had MS, I cried as my symptoms got worse. By the end of the visit I could barely drag my leg out the door. An old man, his wife and a nurse helped me out the door to my car and assured me they would not have a problem driving me to the hospital if I needed. They really wanted me to take them up on the offer, but I refused to believe I couldn’t walk or drive out of nowhere when I got up that morning I was walking perfectly fine. Once at the hospital I barely made it through the automated doors and as I leaned up against the doors once I finally got in a woman saw me crying and prayed to God for me. I wanted to tell her God is usually an asshole for all the things he allows to happen to innocent children and innocent people all over the world and right now he had even less points with what he was pulling with me. But I needed the hug she was offering and so I let her pray for me if she thought that would help. The hug was what I was grateful for.
Then and since then my boyfriend has spent countless hours trying to figure out my body and pushing certain pressure points to try to help me relaxes my muscles from spasms or locking or twisting. He has had to adjust my twisted dropped foot so I didn’t break my ankle. But 75% of the time I am walking perfectly normal. If you saw me right now you would swear nothing is wrong with me and all doctors test would prove you right over and over again.
About 6 months ago though my neurologist who I had seen several times now admitted he was completely stumped about what was happening to me. He said if it wasn’t in my head like he originally thought than perhaps it was something called dystonia. Dystonia? “Is that like MS,” I asked him. “In some case,” he said it can be worse, “but it’s not deadly, but there is also no known cure for it and therapy is experimental”. He gave me the name of a neurologist that specializes in neuromuscular disorders and then provided me with some printed information on dystonia.
I’ve spent a lot of months crying, wondering if it was all in my head and then crying some more because now I knew it wasn’t. Then I continued by spending hours online researching dystonia, types of dystonia and I finally came up with something I could relate to, hemidystonia. Almost everything matched, but still no cause as to why.
Today…today I’m just waiting to see the specialty doctor my neurologist referred me to. The wait list is long. In the meantime I do what I can when I can. I know now the more tired I am, the worse it can be, but it’s not always bad. Most of the time it’s manageable. Even when it’s really bad, even though it’s all very random symptoms I can still feel when I’m about to have a bad spasm and I try my best to prepare for it by sitting and resting. I know evening are worse than mornings and though I use to think it never happened in the morning I know morning are usually my best, this is why I can still work and get from point a to point B. Most of my co-workers have never seen my symptoms or I have been able to play it off as a limp due to a bad knee or a bad hip or a bad back depending on the severity of my limp. When my arm locks I blame it on a bad shoulder or a hurt elbow.
Not too many people have seen my worst days. Those days stay with me and haunt my days. There is nothing like needing someone to help you breath or walk while your limbs lock and jolt.
I feel terrible for my boyfriend when it happens during sex. What a mood killer, but worse I can see it in his face he feels like part of it is his fault for even touching me when he sees what he thinks might be symptoms. But if anyone knows how to help me in a spasm it is him. I am amazed at his knowledge of my body. He knows anatomy well for his job. It use to be a turn on, how well he knew my body, it still is but now it’s also helped me. I’m honestly surprised he hasn’t stop touching me. I believe he understands I won’t have a spasms every time we have sex and even if I do it’s no big deal really, we can usually work around it somehow, but it’s only when out of nowhere I begin to struggle to breath that keeps both of up at night. He worries that it will happen in the middle of the night, but I don’t think it ever has. I hope it never does.