Greetings from the Author:

Welcome to "Cripple Extraordinaire," which contains a record of my thoughts and experiences of trying to live an extraordinary life while enduring chronic pain and chronic illness.

I'm a young adult woman somewhere in her twenties who doesn't bother to keep better track of her age, loves linguistics, knitting, high fantasy books, sci-fi television, and music from the 60s and 70s. I am disabled as a result of an unspecified connective tissue disorder, arthritis, chronic myofascial pain, fibromyalgia, and a supporting cast of lesser diagnoses, which altogether cause pain in some way at almost every moment of every day.

My maxim is a quote attributed to Helen Keller: "I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything I will not refuse to do the something that I can do."

21 April 2011

Jinx

Whatever I did to incur the wrath of the automobile deity, I'm SORRY already.

We just got it back in March after it had been dead for 15 months because of transmission problems (since having a car that is fused in second gear isn't really useable). Today I was driving to meet a friend because we have theatre tickets for tonight and, rattle-rattle, sputter-sputter, my car died at a red light.  So not fun.

A couple of guys from JiffyLube and another guy walking by pushed my car into the KFC lot. I'm grateful for them, because otherwise I would have been stuck there, in the middle of the road, waiting for AAA. It's now sitting, waiting for my husband to come see what he can do about it. My friend is loading her kids in the car to come pick me up.

I find this so frustrating and so upsetting. I just got my car back less than two months ago. My car is a financial black hole. It must be cursed or jinxed or hexed or whatever it is that deities of automobiles do when they're angry.

19 April 2011

To sleep: Perchance to dream....

I have trouble falling asleep at "normal" hours.  When I discussed this with my GP a couple years ago, he suggested that I might have Delayed Sleep Phase Syndrome (another diagnosis to add to my collection).

Good old Wikipedia cites an article written by Max Hirshkowitz in 2004 as it describes Delayed Sleep Phase Syndrome (DSPS).  It explains that, in short, individuals with DSPS have the standard circadian rhythm but delayed.  A mild case is a two hour delay, moderate is three, severe is four or more.  If allowed to sleep when their bodies want to, will have consistent sleep hours.  The problem is that the sleep cycle of a person with DSPS doesn't match up with society's norm.

The International Classification of Sleep Disorders calls DSPS "Circadian Rhythm Sleep Disorder, Delayed Sleep Phase Type" and gives the following diagnostic criteria (p. 128-133):


  1. There is an intractable delay in the phase of the major sleep period in relation to the desired clock time, as evidenced by a chronic or recurrent complaint of inability to fall asleep at a desired conventional clock time together with the inability to awaken at a desired and socially acceptable time.
  2. When not required to maintain a strict schedule, patients will exhibit normal sleep quality and duration for their age and maintain a delayed, but stable, phase of entrainment to local time.
  3. Patients have little or no reported difficulty in maintaining sleep once sleep has begun.
  4. Patients have a relatively severe to absolute inability to advance the sleep phase to earlier hours by enforcing conventional sleep and wake times.
  5. Sleep-wake logs and/or actigraphy monitoring for at least two weeks document a consistent habitual pattern of sleep onsets, usually later than 2 a.m., and lengthy sleeps.
  6. Occasional noncircadian days may occur (i.e., sleep is "skipped" for an entire day and night plus some portion of the following day), followed by a sleep period lasting 12 to 18 hours.
  7. The symptoms do not meet the criteria for any other sleep disorder causing inability to initiate sleep or excessive sleepiness.
  8. If any of the following laboratory methods is used, it must demonstrate a delay in the timing of the habitual sleep period: 1) Twenty-four-hour polysomnographic monitoring (or by means of two consecutive nights of polysomnography and an intervening multiple sleep latency test), 2) Continuous temperature monitoring showing that the time of the absolute temperature nadir is delayed into the second half of the habitual (delayed) sleep episode.

This is me to a T.  My body would be happier going to sleep at five or six in the morning (severe) and waking up at two or three in the afternoon.  I used to do this over the summer break from university, but that means I slept the whole time my husband was at work and was ready to be up all night while he slept, usually saying "good night" to him as he left for work.  It also got complicated for things like running errands, since a lot of places close at five.  And then I'd have to try to re-set my clock for school when autumn came or winter break ended.  I avoided classes that started before 10, knowing that my odds of getting there on time were really low, and was often barely on time for activities and placements that began any earlier... often throwing on clothes and twisting my hair into my stand-by bun as I ran out the door without breakfast and forgetting half my stuff.

I was always a night owl.  As a teenager, my favourite time to clean my room was at eleven or so at night.  It was also my best time to write papers.  I prefer to stay up late working to waking up early.  I hate waking up early ("early" being any time before ten).

I'm trying ("trying" being the keyword here) to keep my sleep cycle relatively consistent with my husbands, who gets up at five in the morning and goes to sleep at ten, but I usually can't pry myself out of bed until eight or nine.  Even then, it's the falling asleep that's the problem.  

I used to joke with my husband that I couldn't "go" to sleep; I had to wait for sleep to come to me.  And it's still true.  We head to bed at around ten, and then I start reading.  I do most of my reading at night, waiting for the moment when I simply can't keep my eyes open anymore.  I suppose that, on average, I fall asleep between one and two in the morning when I'm finally exhausted--the equivalent of someone who usually goes to sleep at midnight crashing nine after getting up early and having a long day.

Last night wasn't too bad.  I think I finally fell asleep around one (after getting a good ways into the Fellowship of the Ring)... but then I had to wake up at 6:30 to go baby-sit my niece.  I curse my alarm clock every morning.  And I always set multiple alarms to make sure that I don't accidentally turn off the alarm in my sleep and oversleep.  (I've done that multiple times...)

It's now about a quarter to three, and I've got several hours of things to do in front of me.  No time for a nap (which would just throw me off even more), but I know I'll be dragging by the time I get home at nine.

The frustrating part?  No matter how tired I am, or how little sleep I got last night, or how early I got up this morning, I'm still not going to fall asleep until after midnight.  And then, when I do, I'll wake up every couple of hours, either from noise from the other members of the house, my husband snoring or his alarm clock, or from pain or discomfort... or sometimes for no reason at all.

Well, I really ought to get up from where I'm laying on my bed writing this post, or I'm going to fall asleep now and nap through my afternoon appointments!





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