Monday, November 7, 2011

Asperger's, migraines, and yet another rant

WARNING: The post below may offend people...but frankly...so what. This is my view about a condition from which I suffer from and I see it in a way which outsiders and even parents of Asper-kids don't. So it will either open your eyes about Asperger's Syndrome and make you understand somebody you know who has it a bit better, or you'll drop off my followers list...either way, this blog is about me, my thoughts, and feelings. I am an Asper-girl, born and self-raised, and this is my story. Now back to my regularly scheduled blog....

So I barely got any stitching done at all. Probably one of the few optimistic points about my migraines is that I don't have them on the weekends, or not until now. They are stress related and my stress is work related, hence the Mon thru Fri migraine schedule. That is starting to change and more and more they are spilling over into my weekends, probably because I'm taking the stress home with me, and it's only going to get worse due to massive changes at work. I can't quit my job, not without another job, or a winning lottery ticket, neither of which seems to be within my reach, at least not now. What scares me is how bad my headaches will get before my brain explodes (which seemed pretty darn likely last night).

My weekends have always been my refuge from the world. I don't open the door or go outside, I get angry when the phone rings or I'm bothered, and god forbid if I should have to go somewhere and do something I don't want to (at least at not without prior planning)! Given the chance, I would rarely ever leave the house, which is probably why the universe won't let me win the lottery, I would become completely anti-social, at least now it has some control over me and makes me interact, albeit minimally, with the outside world. So, when I have to spend my time curled up in a ball in pain, well, frankly it pissed me off! I need my down-time to be able to deal with the world at large. So what happens when I don't get my down-time? My stress level goes up, hence my headaches get worse, hence my down-time gets cut more...it's a never ending cycle.

I've tried to off-set this lately by taking some time off, but when I come back to work, it just gets worse. The more I'm home, hermitized, the more I want to be that way and the more even little tiny things in the real world set me off. Plus work is getting worse and worse by the minute. Big changes seemingly every second and what's the worst thing in the world for someone with Asperger's? Change. And now on to the topic I've been meaning to discuss for a while...

When I first got diagnosed, my first feelings were relief that "oh, finally, something that explains me!", and then almost immediately it was "why didn't my parents do something when I was little?". I was extremely angry for a very long time (and, to tell the truth, am still miffed). But in the 70's and 80's, there was nothing to be done, Asperger's was unheard of (but in my defense I showed enough social issues and OCD issues to scare anyone and it should have been dealt with...I've veering off topic). In those days parents didn't deal with their children's problems, they hid them, and mine were no different, if not worse than most for reasons I'm not going to discuss.

So what does a kid do who has severe issues, no one to talk to, or would if they could, in a time when bad social behavior is not tolerated? I crawled inside myself and locked myself away. The Asper's head is their most sacred place and it's their everything, so being locked there isn't a bad thing, if anything, it's pure nirvana. I learned on my own to not act out publicly by staying out of the public entirely. The fear of making a fool out of myself publicly was so great, it essentially controlled the Asperger's. I learned how to fake emotion so I seemed normal to the masses. I manage to leave the house everyday to go to work because I know is the only way I can keep a roof over my head and food in my fat belly. For a blip on the radar of life I even managed a brief marriage, but that was obviously doomed from the start for numerous reasons I don't want to discuss now. But life is at it's best when I'm on my own...all by myself.

In my late 20's, I decided it was time to finally get professional help (OK, so work forced me to do it, but I got there). But it didn't take long for me to figure out there was no way therapy was gonna work. First off, I'm not about to let someone inside my head, and secondly, Asper's are more in tune with themselves than the average person (and tend to be more energy sensitive and in tune with their senses, my sense of smell, hearing, and taste is sometimes frightening...my Father used to tell me when I was little I could hear a mouse fart one state over and then be able to describe the smell-yeah, pleasant, but you'd have to know my dad).

Of course they put you on the drugs, which, don't let them tell you differently, completely zombiefy you and let me tell you why...Asper's feel very little, except for what they are passionate about, which is intense. The drugs remove the intensity, calming you, which for other problems is good, but when Asper's are only passionate about one or two things in life, take that away and they have nothing...let me repeat for the cheap seats...NOTHING! And here's the biggest zombie reason of all...when you live in your head and you're taking drugs that essentially empty your head, where do you go? You still can't go "out" and by "out" I don't mean Wal-Mart, because, for the first time, you can actually can do that without freaking out...no, I mean outside your shell. You're still locked in it...you don't just step out of your head after a lifetime just because it's now empty and there's no reason to be there anymore. It doesn't work that way. Now you're just locked in an empty mass. Which is cool for a while...you've spent a lifetime suffering, torturing or being tortured, now you can be quiet. But it get's really old really fast and then you're stuck and then the true misery begins.

I lasted 6 months, but it took me another 6 months to get off the medication because it's so addictive. That's a year of my life gone. I'm still pissed about that. Yes, I know the purpose of the therapy was to help get me out of the empty shell so when my head was no longer empty after I was off the meds, I would be OK living outside it. But I've already discussed why there was no way I was gonna let a therapist in my head. I have since tried therapy again just last year and it was just like I remembered...her probing my head and me fighting all the way. It's a completely useless waste of everyone's time. Even my neurologist keeps trying to give me antidepressants to help with my migraines (since they are stress related), but I can't take them at all now, the zombification is almost instantaneous (although Xanax is my best friend lately).

Would my life been different if I had been treated like the Asper-kids are today, as special needs kids living on medication? Yes, I think it would have been, but in a bad or good way is debatable. Granted, I have a mild case of Asperger's, but I can't help but wonder what will these kids be like when they become adults. My parents ignoring my problem pisses me off, but I know probably would have been worse had they singled me out, putting me in special classes (if such a thing existed in my day), or in therapy as a child. I can't imagine what my tumultuous childhood would have been like if it would have been spent taking medication that made me not feel the passion for the few things I do feel for like Disney or this actor of that show or whatever my obsession is at the moment. And I definitely can't imagine not living in my overly active, highly imaginative, and right now extremely painful head because it was empty due to drugs. How terrible it must be not to have a place for these poor kids to escape.

So all this leads to the fact that I deal with everything on my own, in my own head...which is probably why I started having migraines. My pressure has to go somewhere. But given a choice between migraines or a lifetime of being treated as "special needs" (I don't even like that phrase), I choose the migraines. Eventually I will get control of the situation and deal with this stress at work, just as I always have, it's what I do, but until then, I may not get much stitching done until work calms down a bit, but I'll be damned if I let them beat me!!

Let me also add, there was a time I'd do anything to be "normal" and change the way I am which is why I spent my entire teenage years incredibly suicidal, but those days are long gone. I now know who and what I am and have no desire to change it, nor should I. I grew up adjusting to the world, as probably did most Asper kids of my generation. I think Asper kids today have the world adjusting to them, which is the opposite of what I went through (and would have loved as a kid)...but now I don't think that's OK either because I wouldn't be as strong as I am today without my self-reliance. But hindsight is 20/20 and only time will tell about the Asper-kids of today and their ability to function in adulthood.

Soapbox dismount.

1 comment:

Jill Luig said...

Thank you. You put into words what I have been feeling for 58 years. What a relief.