29 November, 2016

Living with a Medical Condition Doctors Know Nothing About

As my blog has mainly become the sharing of my journey, and as most people who still care can tell my journey involves very little time to write on the blog at present, I thought I'd share what's on my mind this foggy, exhausted morning.

There are many diseases doctors struggle with.  Epilepsy is mine.  I've said before that Neurology changed quite a lot in 2008 and I'll say it again.  I'll add that the understanding of how to solve medical issues comes long after cataloguing the basics of a thing's functions.

My epilepsy is a history of doctors poking and prodding at me with pet theories.  Were this the middle ages they'd know almost as little, and at least people would've thought I was possessed, which sounds fun.

Epilepsy effects people in many different ways.  Anytime a patient tells their doctor what it does to them, they hear, "That's not uncommon," or some such thing.  Anytime we share with another epileptic we realise we've had a different experience.

Mine makes me tired, and lackadaisical.  Mine makes me feel like crap for a week or so, unable to muster much enthusiasm for anything.  So I write until I can't anymore, then I do my day job until I don't have to, then I loaf, and the problem compounds itself.  To make it stop I have to be super-healthy, avoid cake and beer, and do my exercises, but it's hard.  I always manage it, but it really, really sucks, and I always take a step backwards in fitness.

I don't much like me when I'm having episodes.

It's amazing, when I think about it, how much they've influenced my life.  I was first diagnosed at 8.  They put me on a drug called Tegrotol.  They didn't know anything about the drug or what side effects it may cause, but hey, why not try, right?  Every use of the phrase, "What the hell?" sums up neurology.

So on Tegrotol I went, and I stopped having my episodes.  School was a bust, academically and socially, but I could get good grades if I did my homework.  Was I experiencing side effects of the medication?  Who knows?  There were too many other factors.  I was bullied as badly as it's humanly possible to be bullied, and I tried to kill myself a few times, but mostly just cry for help stuff, so I lived--largely thanks to discovering music:  I genuinely don't think I'd be here were it not for Nirvana, which is a topic for another post.  In my teenage years I was happier, and perhaps a bit lazy, and extremely undisciplined, but I got decent grades, and I had hobbies, so everything was fine, right?

Well, at the age of 20-something-early, I was diagnosed as episode free.  So I got off Tegrotol and, suddenly, colours were brighter, I was smarter, I had more energy for everything.  Old high school friends reading this would hardly know me.  They'd remember a friendly version of Holden Cauldfield.  They could never have known that, the entire time, I was only half awake.

What might I have done with my life were I fully awake?  I wonder.  All an artist's experiences mount up to create his or her work, so it's foolish to have regrets, but I certainly would have done things sooner.

Skip ahead to the late twenties, and my episodes started again.  I got tired.  I got chubby.  To tell you the truth, I don't remember much of 29 to 32.  My epilepsy destroys my memory, you see.  The pathways are still there, but access becomes awkward and memory gets foggy.  I know the quality of my work back peddled.  I know I can't remember certain lessons I learned from my supervisor back at university.  That's about it.  I didn't go to the doctor because I was afraid of being put on Tegrotol again.  Better to die with my faculties intact than live a half-life.  Except they weren't intact.  I was living an eigth-life.  The present-day me would have realised this, and of course considered how much nearly dying twice a week affected my fiance.

At long last, my family (including my fiance) convinced me to go.  My brother played a huge role, offering me a private neurologist whom I could talk to at length, instead of the McDonald's Drivethru medicine you get these days on the NHS, which is fine if you have a broken finger, but not if you have a complex issue doctors know almost nothing about.

My early thirties were extremely exciting.  I was put on Lamotrigine, which actually works, and doesn't appear to have side effects.  I lost all my fat.  I got happy, and focused.  But still, on very rare occasion, I have a couple of minor episodes in the morning, just a little giggling and teeth chattering, and I wake up reminded of just how much epilepsy can effect a person's life, and how much it's defined mine.  It's a hidden disease.  You never know who has it, or how much, if at all, it's influenced them.  And because it effects not the body, but the mind, it's almost as mysterious now as it was in the middle ages.

At least neurologists finally proved what mind coaches, hypnotherapists, teachers and hippies already knew:  that the brain is constantly changing, that humans constantly evolve and grow, and aren't tethered to any fixed path.  At least now, in the last 8 years, worthwhile research has been accomplished.  Maybe my children's generation (not that I have kids yet) won't have the same issues.

Anyway, back to work.  I had an episode yesterday and I'm already unable to see straight, and if I don't do some of my novel now, Friday will be a bust.

Here's to raising my dosage, and another year of not being allowed to drive.

This post's pointless picture for Pinterest brought to you by medical bunkum, and shooting in the dark: