Wednesday, December 22, 2010

Allow Me To Clarify

It's come to my attention, quite lately, that many of those around me have no idea what SPD means and how it makes me feel. This is totally fine, again given my newish diagnosis, but coming up against these roadblocks continues to make me feel that age-old sense of isolation, dating back to my teenage misdiagnosis of Panic Disorder. Anyone who's met me for more than 10 minutes has gotten my basic SPD spiel, and those who have known me for a few months or more really get a hands-on sense of what it's like to be someone trapped under the weight of this condition - untreated, mind you - for 27 years. But apparently seeing me in the raw, wrestling with the anxiety that comes from my difficulty processing, isn't enough to get any of these facts to stick. I know people mean well, but I suppose being in the field of mental health makes me more in-tune with the needs, behaviors, attitudes, and emotions of others. When this isn't reciprocated, especially in the more critical relationships in my life, I can't help but feel frustrated.

For those of you who want a cheat-sheet, allow me to clarify:

1. I am not afraid of the dark.

This is something that people around me have mistakenly believed for as long as I can remember, attributing my increase in anxiety to the lack of daylight. The darkness is a problem because it cuts my visual processing abilities and forces me to rely on my jumbled auditory sense, which makes the world sound like a mishmosh of sounds in the daylight, let alone after dark. I have also noticed - again, since the dawn of 1983 - that I feel worse as the evening draws on, most likely due to the fact that I've spent the entire waking day fending off and failing to properly process menacing sensory input. So while darkness might hit around 4:30 pm in the winter, it is nowhere equivalent sensory-wise to say 11 pm. Do you see me shying away from those later evening activities? You can bet it's because my brain is completely fried, and I feel frayed and susceptible to a melt-down. I will place bets I'm not the only adult SPDer who can state this claim.

2. I am not avoiding you.

I haven't called? I haven't emailed? You can't seem to pin me down for an activity? It's really not about you, trust me. When external activities generate anxiety, you can bet that I can't reach any state of sensory-normalcy. Picture feeling like bugs are crawling up your arms and you want to shed your skin pretty much on a daily basis, now add life stressors (or, um, graduate school work) to the heap. Do I seem a bit jumpy? Have I not been able to call you? Wanna take a guess why?

3. I need your flexibility.

Maybe I've made what seems like a "weird" request about the time or place of an event. It's most likely because the event is at a time that is unpalatable (see #1) or the location is terrifying (something that a classmate with SPD and I talk about frequently, fear of the unknown takes a new, special twist with SPDers, because we're terrified of what sensorily awaits in an unknown location - everything from where the lights are located and how bright, how echoey the room is, how busy it'll be, what the chairs feel like. It's life's true picnic). Are you a well-wired human being? Would changing time or location make you feel ill in any physical way? If so, let's compromise. If not, please, I need your flexibility - it's not a luxury I'm afforded with this condition.

4.  I need your understanding and support.

This is the bottom line, this is the fuel that keeps me ricocheting between the endless sirens and hustle and parade of people. Without the understanding and support of those who love me, I am without a lifeboat, and it's a very cold ocean. If I can't find my voice in an SPD-related situation, please help me stand up for my "quirky" needs, regardless of where that puts you in relation to others. There are very few people who must stand firm with me, but if you believe this applies to you, it comes with the territory. I promise I'm worth the work.

You want to love someone with SPD? Ask questions. Learn how difficult daily living can be. Close your eyes and imagine a world where noise and light and touch and balance are menacing, terrifying, draining forces to be reckoned with every single day. Then add the layers of your life atop of this precarious heap.

My name is Rachel, and I'm an adult living with Sensory Processing Disorder. Welcome to my world.

Monday, December 20, 2010

Cheap Date and Mystery Symptoms

It might just be me, it might be the SPD talking, but even one glass of wine goes "straight to my head." A few weeks ago, I decided it would be a good idea to have wine with dinner, just one glass, just because I was using it for the sauce of my chicken picatta. I poured a glass for me and one for Josh, and we had dinner. By the end of the meal, about 1/4 of the glass remained, so I tossed it back quickly in an effort to be done and clean up. Colossal mistake. Josh said it reminded him of when non-SPDers get drunk, but the time lapse was way shorter. About 5 minutes after my innocent drink of wine, I was pretty much flat-out drunk. Seemingly funny, but also a bit disconcerting. I'd love to know whether or not this has something to do with my grand ole sensory stuff.

Also coming up is a trip to the neurologist. For years now, I've had these mini seconds-long "episodes," for lack of a better term, where I feel buzzing on the left side of my head, causing my head to pitch forward, speech to stop, and my equilibrium to be completely lost. If you didn't know I was having one of these "episodes," I'm sure you'd hardly notice, but they leave me feeling pretty beat and a bit shaken-up. In the past two weeks, they've occurred four times. My OT said she's never heard of such things, and my SPD pal D. said they were also unfamiliar to him. I wonder if they're somehow related to the weird wiring of my sensory system . . . will keep you all posted.

I know it's been a while since my last post - D. even checked in on me lately, just to ensure I was still alive/all about our cause, and of course I am, but my first semester of graduate work is coming to a close (finals this week!) and Josh and I have begun wedding planning . . . so it's a bit hectic, to say the very least.

Over winter break, I hope to re-begin my listening program - this time, sans vibrations - that went so well last time - and I need to get a pilates ball for my moro exercises - which I believed I described in an earlier post, but am blanking now as I write :-)

Anxious times are tough for us SPDers . . . all sounds become painful, all movement becomes distracting, it all leads to frustration. I'm doing my best to stay calm in the midst of the (happy) chaos, and continue to remind myself how lucky I am to finally have a diagnosis. This year has meant many things: the start of a new career and education to match, the dedication of a life-long relationship, and most thankfully, after 27 years, being told that yes, I am in fact somewhere in the realm of normal. I'm a woman with SPD. Lucky me :-)