No Day But Today...

Ok so I'm not the sickest person out there by any means - I'm not dieing from cancer, I don't have an impending death, I don't have a disease that effects my day to day life, but I do have a disorder that really gets in the way sometimes and makes life difficult.  When I was 17 I was diagnosed with a seizure disorder due to my permanent extremely low blood pressure.  Blood pressure is a funny thing...when it's too high, we can prescribe medication to lower it; but when it's too low, there's not much one can do except eat really salty foods and hope that they don't develop a cholesterol problem.

Two weeks after I graduated from grade 12, I had four massive grand mal seizures within a 4 hour period - I was on bed rest and high doses of drugs for the rest of the summer which I don't remember.  To be honest, about the only thing I do remember from that summer is my friends bringing me a happy-face overloaded care package complete with freshly-made muffins and a helium balloon among other things. I was so "out of it" that I couldn't even get to the bathroom on my own two feet without someone almost carrying me and then standing guard outside the door in case I went down.  I wasn't allowed the luxury of showering in privacy as someone always had to be in the bathroom in case I passed out in the shower. That went on for most of the summer and a good portion of the fall and winter.  I recovered the use of my body by the time university came around in the fall and I started a full course load amongst doctor appointments, brain scans, and other medical tests.  I had my brain scanned multiple using CT scans and MRIs to rule out there being a tumor or other abnormality, I underwent cardiology testing to rule out any cardiac issues, and I underwent neurological testing to ensure that my nervous system was functioning up to snuff.  When all came back with negative results for whatever they were trying to test for, they all concluded what I had was called neurocardiogenic syncope...or a fancy way of saying I fainted, really badly.  We went on to find out that because I had a naturally low blood pressure, my fainting lowered it even more, causing me to slip into a seizure.  Unfortunately, as I said before, there isn't much the medical field can do for low blood pressure patients other than to tell them to eat healthily, add plenty of salt to their diet (twice what is recommended in an average person actually), get plenty of rest, and not to become stressed too often.

I was on a strong dosage of anti-seizure medication for a year until they decided that it was doing me no good nor no bad, so they took me off and that was that.  Since then, I've had several seizures, several almost-seizures, and several days where I can't get out of bed because something short-circuits in my head and my body feels "out of sync" (only way I can describe it).  I actually had a full-fledged seizure in the supermarket last year right at the checkout.  Incredibly embarrassing.

I may not have epilepsy like everyone assumes I do when I seizure or say I have a seizure disorder, but it is similarly debilitating.  When I was first admitted to the hospital for seizures, my license was immediately revoked in the ER and I waited over 2 years to get it reinstated. I am back at the beginner's level until I take the road test.  Even though I've had it back for over a year, I still haven't taken that test - I've seizured too many times and been close too many times to feel comfortable behind the wheel.  Because of this, I need to either bus everywhere, or be driven everywhere, which really sucks.  I also can't go out with anyone without telling them that I have a disorder...which usually freaks them out because "what if it happens" while I'm with them? I had one guy warn me I had better not do it around him otherwise he'd be down on the floor beside me having a heart attack from panic.  Like I can control it.  I also can't go out and party like I'd like to and drink because alcohol dehydrates and lowers blood pressure, and is thus a trigger.  Sure, I have some nights where I let loose and don't give a shit, but then I pay for days after because I feel weak and shaky and can't do much but guzzle down sodium-high gatorades and powerades as though my life depended on it (funny...it actually does).

My life is generally pretty stressful being a full-time student in a double-degree professional program with two part-time jobs - I can't help that.  So, we come to days like today, where my alarm clock goes off at 6 and as I sit up, my sheets are soaked with sweat, my jaw hurts from being clenched, and I have fingernail marks wear my fingers dug into my skin - a seizure in my sleep.  I figure I'll skip morning classes and go for the afternoon and that a couple more hours sleep will help and as I'm falling back asleep it happens again.  Two back-to-back seizures which hasn't happened in several years.  I try to get up out of bed, but it feels like the back of my head is nailed to the pillow and like the internal balance of my whole body is somehow just "off".  I call it a day before it's even started and repeat to myself how much I love my body.  I tell my mom that I'm taking a "Mental Health day" and try to fall back asleep.  When I get up finally, she asks how I'm feeling and I say I feel "off" - and she gets it.  Back to bed with my bottle of gatorade I go and another day is shot all to hell because of my stupid body not being able to handle stress.  But, I'm a lot better off than most.  And for that I am thankful.

xo