Today’s blogpost is a personal story. My personal battle with an invisible illness: epilepsy.
A year ago, on a friday night, I watched some stuff on Netflix and went to bed. I woke up with my boyfriend sounding stressed out in the middle of the night. Apparently I was shaking and having some kind of an episode in my sleep. “We’re going straight to the doctor in the morning, this is scary and not good.” I agreed and was scared as hell,but managed to fall asleep. The next thing I remember is waking up to hear my boyfriend calling the doctor, asking for help. I was confused, felt sick, I couldn’t understand what happened. What the ?? I had another seizure, and before I knew it, two doctors were standing next to my bed, asking questions, checking me out and telling me I needed to go to the Emergency Room.”They already know you’re coming”..Wait.. WHAT?! Noooo, there’s no way you’re taking me to the hospital, I DON’T DO hospitals! But then I realized I had no choice. This was the day everything changed. Life changed.
I fell sick as a dog, I kept throwing up and was so scared sitting in the waiting room. Thankfully it didn’t take long, before they took me in for an examination. “Did you drink alcohol or take any drugs last night?” No…I was being lazy, watching Netflix with some chips and a glass of wine. “How much wine?” I guess it’s part of the routine, but it made me a little uncomfortable. HA! But the worst was still to come, they had to draw some blood for testing, and I’m such a wuss, I always faint. And my brain had to be checked out, to make sure there wasn’t a brain bleed or I don’t know what. I never really felt this way, scared. Am I sick? What the hell is wrong with me? What’s going to happen now? We had to wait to the test results, which came back all clean. I was told I had epileptic seizures. Tonic-clonic seizures.
“What is a tonic-clonic seizure?”
This type is what most people think of when they hear the word “seizure.” An older term for them is “grand mal.” As implied by the name, they combine the characteristics of tonic seizures and clonic seizures.
- The tonic phase comes first: All the muscles stiffen. Air being forced past the vocal cords causes a cry or groan. The person loses consciousness and falls to the floor. The tongue or cheek may be bitten, so bloody saliva may come from the mouth. The person may turn a bit blue in the face.
- After the tonic phase comes the clonic phase: The arms and usually the legs begin to jerk rapidly and rhythmically, bending and relaxing at the elbows, hips, and knees. After a few minutes, the jerking slows and stops. Bladder or bowel control sometimes is lost as the body relaxes. Consciousness returns slowly, and the person may be drowsy, confused, agitated, or depressed.
- These seizures generally last 1 to 3 minutes.
- A tonic-clonic seizure that lasts longer than 5 minutes needs medical help. A seizure that lasts more than 10 minutes, or three seizures without a normal period in between, indicates a dangerous condition called convulsive status epilepticus. This requires emergency treatment. Source:http://www.epilepsy.com/
Needless to say, it all felt scary and overwhelming. I returned home and felt tired and sick, but was too scared to go to sleep, afraid to have more seizures. I cannot begin to explain how thankful I am, that I have a boyfriend who is so supportive and who took care of me like he did last year. Due to a personal issues, I am no longer in contact with my family, so I didn’t have a family to turn to for comfort. He was my rock, held my hand and stayed with me when I was tired and afraid to go to sleep.
The medication I was given, was to control seizures, but made me dizzy and so tired. I could sleep for hours during the day. I had all sorts of tests ands scans, but nothing was found. It was a relieve that my seizures weren’t a result of some sort of brain damage or tumor, but at the same time they couldn’t find out what caused my seizures, or what triggers I have and should avoid. My driver’s licence was revoked for a year, and I was told that I had to stay on my meds for at least two years.
I had to figure out how to get past the fear, how to get back on my feet and look ahead. It’s not very practical to lose your driver’s licence, it kind of felt like losing a bit of freedom. Having to ask for help a lot more, when you’re so used to do things yourself for so long.
How are things now?
Well, I found out that I had to set reminders to take my meds. At a certain point, I just forgot to take them. And I was quickly reminded, that am sick and will have seizures in my sleep, if I don’t stay on my medication. I’ve set several reminders on my computer and phone to remind me. The meds have several side effects, one is memory loss. Great huh? Other side effects that I struggle with: hair loss, headaches, bowel problems, trouble sleeping, gnashing teeth during sleep…
Like I said, my boyfriend was my rock, my biggest support and helped me though all of it. I also found out who my real friends are. Some just disappeared, or just didn’t understand the effect of epilepsy. Their loss though, I guess it’s for the best. I have gotten in contact on forums with some amazing people who suffer from epilepsy, true warriors who have multiple seizures a day, can’t work or had to have brain surgery.These people inspire me so much with their stories and strength.
At one point I had a major seizure after a visit to the dentist last april. I just had a wisdom tooth removed, and felt so relieved after it was all done. I was scared to have another seizure, so was happy to return to my boyfriend who was waiting for me in the waiting room. “Ohoh, I think I’m gonna pass out after all”, and quickly sat down. The next thing I remember is that I was choking on a piece of bandage that was put in my mouth. I woke up on the floor in a pool of blood and felt so embarrassed. I scared the shit out of everyone in the waiting room. Going to the dentist was never my favorite hobby, but now really has become a thing of fear and stress. Guess where I’m headed today? Facing my fears!
I’ve realized I want to do so much more: travel, blog, make more music, explore and start my own family! In the past I have struggled with depression, and the most positive thing that has come out of this all, is that I’m thankful to be able to do what I love and realize how blessed I am.
So this is my story, I’m really happy so see how far I’ve come since last year. I won’t let these seizures control my life.
Now a lot of people I spoke to don’t really know what to do when someone has a seizure. In fact I didn’t know anything about seizures, until I started to have them myself. My boyfriend asked the doctors what to do, if he should try to open my mouth or put something in my mouth to prevent a tongue bleed. (I bite my tongue during seizures.) This was their reaction: ” Well, if you want to lose your fingers and never want to play guitar…No, never try to put anything or go near her mouth during a seizure, just protect her from harming herself by putting her on her side, if possible.”
So to spread some awareness about epilepsy, here are the best tips to aid someone who’s having a seizure:
Thank you for reading my personal story. Thank you so much for your support! x Chantal