Thursday, March 31, 2011

A Night with a Weighted Blanket

I picked a lousy night to test-drive my new weighted blanket, which arrived yesterday afternoon. I'd gotten home late from my fellowship, cranky and uncomfortable (new shoes = bad move), and the first thing I did after receiving a bear hug from Josh was to pop open the blanket box. The blue chenille was luxuriously soft, a definite plus in my tactile book. It was supremely heavy to lift when folded onto itself (just about 17 pounds), and the two of us ran it into the bedroom and I snuck underneath the cover. Immediately, I went from my usual Category 5 hurricane to quiet. Pretty awesome. Whereas normally I'd feel the need to keep my limbs in motion, as it's hard to slow down, the weight was like a firm grip, keeping me in place.

But the evening never allowed for some pre-sleep slowdown. Josh had paperwork to tend to, and I flitted from room to room, nervous about my psychopathology presentation (due today) and excitedly convinced that I'd immediately pass out under my new sensory tool. I actively tried to get sleepy as I lay under the cover reading my Nook, but I think I was too wound up to be successful, and so I eagerly shut my Nook and settled under the blanket for sleep.

The blanket is much heavier than my makeshift weighted blankets (the usual six stacked tall above me), and I found it hard to adjust to the temperature difference as well as the weight difference. I guess there's only so much a blanket can do - it can't make me sleep, but it can relax me, and overall I found that it did just that. When I went to turn over in my frustrated sleeplessness, I found it hard to readjust the cover, and it almost felt like I was fighting against the weight instead of embracing it. Needless to say, any changes to the sleep environment often mean (for me at least) a change in pattern, and as we know, this particular SPDer is keen on her patterns. In retrospect, I should've saved my new tool for a less wired and stressful night.

I'll try it again tonight. I like the concept of the blanket and its abilities to get me to immediately tune out other powerful sensory stimuli. It's not unlike a fire blanket, and often the bombardment of the sensory world lights me ablaze. (Makes me wonder if that level of calm is what the rest of you all experience in your normal lives.) If all else fails, and I can't adjust to it at night, it will still serve as an important part of my afternoon/evening sensory-arsenal. Stay tuned.

Wednesday, March 23, 2011

Salve for an Unseen Wound

I'm having a day where I feel unheard and misunderstood, one of many in this life so far. Some days I don't have the energy to rehash my "situation" for those who should know better 100-times-over, and so I turn to the strength of the email below.

My mom received this from an old friend of hers, and it was so moving and powerful for me to read last night. Only the misdiagnosed really understand the true depth of upset during these situations. And as the author points out, being diagnosed with something still so unknown doesn't exactly make for the easiest life.

"She is amazing. I don't know how she keeps up with all the things she is doing . . . It is exciting that she is studying to be a therapist. Tell her she can practice on me. I see a therapist once a week. Both my son C. and I have Bipolar Disorder. It is a problem with the parts of your brain that regulate your emotions. You swing from extremely high to extremely low in cycles. Luckily, we have the milder form of the disorder, which is know as bipolar II. The bummer is that with bipolar II, you spend much more time at the depressed end of the spectrum than in bipolar I. Not that I wish to have that, because bipolar I can land you in the psych ward at the hospital. The treatment is a combination of therapy and medication (mood stabilizers sometimes in combination with antidepressants). Since Rachel is studying to be a therapist, she can tell you more about it.

I can sympathize with Rachel on getting a much delayed diagnosis of her Sensory Processing Disorder. Tell her, if it makes her feel any better, that I was just recently (three months ago at 59 (!) yrs old) diagnosed with Bipolar Disorder. Since my first episode at 17 and throughout my life, they told me it was depression, wrong!!!  I told you that we had lots of problems with C. as a child and teen. The bipolar is why, only we didn't know it then. We took him to all kinds of doctors and therapists, but they never figured it out. In those days, they didn't think children developed Bipolar Disorder. C. was diagnosed only two years ago. He told me, 'Mom, this is what I had all the time when I was a kid.' As I'm sure you know, dealing with Rachel's mysterious symptoms when she was growing up as I did with C., finding out what is actually the matter is a big relief, even though the problem still exists and always will. Turns out C. probably inheirited it from me because it tends to run in families. The ironic thing is that they were finally able to diagnose me correctly, partially based upon the fact that C. had it too.  Usually, it is the other way around.

I had never heard of Sensory Processing Disorder before. I looked it up on the web and from what it looks like, it is not very well known by most people. Hopefully, as time goes on, it will be. It must have been terrible for Rachel to be told she had Panic Disorder when it wasn't that at all. When you are misdiagnosed, you keep wondering why the treatments you take aren't working. You begin to think that you must be doing something wrong, that it is your fault that you're not getting better. Very frustrating to say the least. I'm glad she was finally able to find treatments that can help her. I am very impressed by the fact that she has achieved all she has despite having such a difficult problem to deal with. Most people wouldn't be able to do that well even without the extra issues. Tell her I think she is amazing!"

Tuesday, March 22, 2011

Moving Right Along

Moving is a terrifying proposition for someone with SPD. My senses often feel out-of-control, and when they do, it makes me feel crawly-skin-anxious. Moving is essentially induced anxiety. Let's take you out of your comfort zone, moving says to the SPDer, and plunk you down in the middle of uncharted sensory territory. Your old home, however loud the heliport might've been, or how small the bedroom, or how lonely the building, was at least a known entity. When the 80s microwave emitted a cringing beep, at least it was a familiar, albeit problematic, sound. Upon exiting the building and weaving into the haphazard flow of New York City pedestrians, at least it was expected discomforting movement.

Moving presents a plethora of unknown sensory issues. How will it feel to sit in the middle of a larger apartment? How well will you fare visually as you stare across new hallways, into disorganized and visually-taxing piles of boxes and strewn clothing? How well will you contend with the church bells and restaurants and neighbors? And what about the subway? Once these become habitual - the ride through the boros, the walk to the bathroom, the environment of the neighborhood - the anxiety will drop to a more palatable level.

At least, I hope the anxiety drops. I moved on Friday, and it's been a very rough couple of days. It's hard to take a random brushing break while moving and unpacking, so I most definitely didn't take care of my SPD body as well as I should've during the stress. Even with getting back to brushing and the usual SPD toolkit, I feel not unlike a perperually-overflowing volcano of tears. I'm quick to cry, quick to yell, quick to wish I had a pair of red slippers that could take me back to my home for the past five years. There's no one quite so unsettled as an unsettled person with SPD.

Thursday, March 3, 2011

Weighted Blankets and Six Month Reflection

No surprise, I have trouble sleeping. If I manage to stack enough layers on top of me (the current amount: one blanket, one sheet, two doubled-over blankets, and a heavy comforter), I wake up in the middle of the night in a complete sweat. This is why, ever since I was tall enough to reach the knob on the bedroom air conditioner, I've tried keeping my bedroom at a balmy meat-locker temperature. It's either deal with the temperature dichotomy in the room or not sleep at all, and most times, regardless of the temperature, I lie awake in a haze of half-sleep until I take melatonin to fall asleep. It's toughest in the summer, when no amount of AC can really bring the bedroom down to a tolerable temperature, and I have to scrunch up a sheet and a thin blanket, and convince myself that they're heavy enough.

My proprioceptive sense is such that for some unknown reason, my body never quite understands where it exists in space. This is why I am perpetually bashing into familiar furniture and struggle to sit at a table in the middle of a room. A few years back, before my re-diagnosis, I kept a blog on my 'experience' with Panic Disorder. I wrote this about one particular tough proprioceptive moment:

And so I wove my way through construction and conversation on Friday, in search of an Irish pub lunch and select photographs, in heels and helium. We were a large party, and were sat in the middle of the large, open space; our words drastically competing with the swarm of laughter and jumble of letters from the surrounding tables. I swear I clung to my chair with my fingertips as we waited for our food, gently reminding myself that I could always walk to the bathroom to regroup.

This is fascinating to me, especially now that I am armed with the knowledge of my true issues. What I perceived to be a reaction to anxiety actually perfectly describes the way someone with a whacked-out proprioceptive sense would deal with the same situation. The room was excessively echoey and loud, and the visual I painted was chaotic. 

The bedroom is not unlike a big, open restaurant - minus (typically) the crowds and the food service. It only makes sense, then, that I feel untethered even when I lie down to rest. I notice that this is especially true when I'm sleeping next to Josh. While I feel I should be calm, instead my mind fixates on the noise he makes and any movements while he sleeps. This turns into an anxiety reaction, and I feel my heart pounding and my limbs get shaky and restless. We're moving in together in two weeks (finally), although I'm a bit concerned about how my sleep patterns will shift.

Enter the Weighted Blanket. 

A few weeks ago, I received a new shipment of Wilbarger-related brushes in the mail, along with a pediatric catalogue for 'special needs children.' (Nothing to make a grown woman feel so small as a catalogue filled to the brim with objects designed for her ill-timed diagnosis.) An entire section was dedicated to children with Sensory Integration issues. There were colorful, gummy objects to bite on (I used pen caps, pillows), tactile tools with bumps and lines (I used soft stuffed animals, textured blankets, fur coats), and weighted blankets (I still use my faithful stack of normal blankets). I was most intrigued by the weighted blanket, and emailed my OT to ask whether this was something I should pursue. She responded simply,  "YES, YES, YES!" 

I'm in the process of researching the right weighted blanket - mostly because they're over $200 each, and sadly not a cheap mistake to make for a graduate student on zero budget. Research recommends getting a blanket that equals 10% of your body weight, plus a pound for distribution. I can't imagine sleeping under 16-17 lbs of weight, but perhaps 'they' know more than I do. 

I'm entering my sixth month as an adult with Sensory Processing Disorder, amazingly enough. I can no longer fathom the time I spent before I was armed with information. I look back at things like my anxiety blog, and smile sadly at the woman groping in the dark for any explanation available; different, frustrated. Soon, I will add another item to my SPD arsenal, making yet another attempt to lasso the senses that keep me on the fringe of the norm - deeply hoping I'm doing my 27.5 undiagnosed years justice.