When I was about 13 or 14 I started having problems sleeping. I would wake up on the floor, in complete muscle pain, sweating, sometimes even finding I had wet the bed. No idea what was going on, at first I thought maybe it was bad dreams. Then I realized there was a pattern... this happened about once a month. In my head, I knew something was happening to me. I mentioned it to my mother a couple times, especially on the real bad days that I felt like death and didn't think I could make it thru the school day. But she always turned a deaf ear. One of those parents who believed if I wasn't gushing blood and have bones sticking out~ there was no reason to miss school... or see a doctor! So 3 or 4 years of this nightmare, pretty much on a monthly basis... Middle of the night, I wake- but have zero control of how my body moves, no voice to scream for help, pitch black room. Beyond terrifying for me... and of course a mother who thought I was making it up.
The summer between my junior and senior year in high school I went to spend time with family in San Diego, my parents headed off to Hawaii. After a couple days I went to the grocery store with my uncle and my new little cousin. All I remember is walking down an aisle carrying the baby( my uncle was somewhere else in the store), I remember someone scream, and what felt like the baby being taken out of my arms. Next thing I knew, I was on a stretcher being loaded into an ambulance, my uncle right there next to me. I was confused, disoriented, and terrified! I really don't remember much of my hospital stay, but I was told I had had a grand mal seizure. My parents returned from Hawaii, the doctors put me on meds. We were referred to a doctor back in Salt Lake.
I was a wreck! What did all this mean? Was my life going to change because of some messed up brain abnormality? I was hurt and angry with my mother- she wouldn't listen, she didn't believe me... and now look!
Over the years I have had a number of physical and emotional challenges surrounding my epilepsy. Working, raising my daughter, driving. I managed to live a very normal life for a long time, but the seizures changed from night time to anytime, from monthly to random. I had to stop doing so many things in order to remain safe. I don't go swimming, I no longer drive, rock climbing is out.
The past few years seem to have been my worst in the 35 years I've suffered from this disease. But I have an incredible support system. Kayla has been there her entire life- witnessing and helping me thru these seizures. Troy always makes sure I am safe. He allows me to sleep with the tv on... after those years of total silence and darkness, the television truly does put me at ease to go to sleep... because I know if I wake to a seizure, there will be some light that I can try to focus on, and I can hear something other than the noise in my head.
Last night was the worst seizure I've had in probably three years. I woke from it totally disoriented. I didn't recognize my daughter or my husband, I could hear Troy speaking to me, but the words were incomprehensible (I think that's the word I want), my dear Roxy- my seizure dog, was trying to check on me and all I did was push her away. When I was able to get up- every muscle in my body was cramped, Charlie horses! I couldn't walk.
I was once told I might outgrow this, but I'm pretty sure I'm past that window. But I have done research, and I am now on a mission to find a neurologist who believes in some of the things Ive read. There is a 75% success rate in women who have a hysterectomy- no longer having seizures! This is my goal at this point.
After all the years of injuries and anxiety, limits and precautions... I am keeping a very positive outlook for the future of my condition.
The idea of not getting anymore major injuries is a wonderful thought! I've had a number of concussions, black eyes, cuts on various parts of my body, road rash on my face and other parts... I don't hold my breath that this will be 'cured', but I can keep a hopeful attitude!
Thank you to my family and friends who have ever been there and helped thru one of my seizures, and thanx to everyone who has said prayers for me, and supported me.
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