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."
Showing posts with label chronic. Show all posts
Showing posts with label chronic. Show all posts

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!





P.S.   Attention bloggers with disabilities:  Have you signed up for Blogging Against Disablism Day?

30 March 2011

The Loop

Here's me:
Here's the loop.  The loop represents my diagnosis status and all that medical information that has bearing on my treatment, prognosis, and life in general.
When it comes to my diagnosis, test results, and what I might be looking at for the rest of my life, I feel as though I am not in the loop:

I am now on a quest to remedy that fact.  I want to be in the loop when it comes to my health.  I want to be informed so that I can make decisions.  I want to know what the test results are and what the doctors are thinking when it comes to why my body doesn't work.  And if I'm not getting clear answers when I meet with them face to face, by golly, I'll have to get them another way.

I'm requesting copies of my medical files from my GP and my rheumy.  For anyone else out there who is a little frustrated with their current medical status or wants to be better in the loop about their health, you have a right to your medical records.  US law (pretty sure UK and Canadian law are similar) states that your medical information is your property.  You have a right to examine them or ask for a copy.  So that's what I'm doing.  I'm currently writing letters to my docs.  I'm looking forward to actually understanding what they currently have me diagnosed as having and then making decisions based on what we've done and what question marks I still have as to where to go and what to do next.  Because I'm not satisfied with where I'm at and I want answers.  And if requesting copies of my records is what it takes to get me in the loop, I'm all for it.

28 February 2011

The Worst

As a part of the undiagnosed ridiculousness that I live with, I experience a variety of pain:

  • plantar fasciitis
  • ankle pain (not otherwise specified)
  • patellofemoral pain (knees)
  • hip pain (not otherwise specified)
  • degenerative disc disease (lumbar)
  • hand pain (not otherwise specified)
  • sciatic nerve pain
  • and probably more that I really just don't want to think about right now.
But the worst pain of all is the neck pain.

I could feel it coming on as I went about my day on Saturday.  I should have paid more attention to the little twinges of pain shooting from my skull down my arm and back, but they were only "little" twinges and so I ignored them.  I should have immediately embarked on a quest to quash them with strong doses of anti-inflammatories, muscle relaxants, hot packs, and Bengay.  But, as I said, they were "little" twinges, so I ignored them.

Sunday they refused to be ignored any longer.  I woke up before my alarm (after having a miserable night's sleep) with the pain pulsating, ripping through my body every time I moved, and rendering me unable to do most things for myself.  I couldn't lift my arms above anything that moved my elbows away from my sides, not even to get a cereal bowl from the cupboard.  Bending to lift the milk from the fridge and holding it to pour it would have made me scream.  But I needed food in order to take the massive amount of anti-inflammatory that I should have taken the day before when I could reach the cereal bowls and lift the milk.

Enter my superhero--Sir Husband the Wonderful.  He spent the morning bending and lifting and carrying for me.  He poured me a bowl of cereal, got me my box o' meds, and brought me the Kleenex box when the crying-from-pain started to impair my abilities to see and breathe, much less eat.  He helped me get my clothes, smothered me with Bengay, and brushed my hair (some, anyway.  I know I was asking a lot).

I wasn't able to do anything yesterday.  I couldn't knit.  I couldn't read.  I couldn't watch TV.  Everything was uncomfortable.  Of course, soon the meds kicked in and my brain abandoned me.  The combination of multiple bottles that caution, "May cause drowsiness" is usually marked drowsiness.  I was loopy.  I was out of it.  Of course, after adding a sleeping pill to try to just knock myself out to make the pain and loopiness go away, I received an email that needed prompt attention (or at least an "I have received this email and will get right on that... tomorrow, when I can think again" response) and could barely keep my eyes open long enough to register that what I was typing was not showing up properly on the screen.

I slept moderately well last night--better than I do most nights, but not as well as I expect to when I take a sleeping pill.  This morning, the pain is better than it was yesterday, but still a powerful presence.   Sir Husband is off slaying dragons (working), so I'm on my own today.

I hate when my neck hurts.  The last time it hurt this badly (right before my birthday a year and a half ago) I ended up going to the ER at 4am.  I can't do anything, like I said above, but even more so, I can't do things like shave my legs and wash my hair.  I have to rely on others to help me so that I can get food and put on a sweatshirt.  And I can't just sleep because I can't find a comfortable position laying down (unless, of course, I am just so medicated that my eyes won't stay open anymore at all and I'm incoherent).  I never know when it will strike, but when it does, my life comes to a screeching, agonizing halt.

To add insult to injury, I don't even know what causes it.  The ER said "myofascial pain."  My GP at the time said "pinched nerve."  My rheumey says, "I'm not worried about it."  Oh, yes.  He's not worried because it's not causing damage (so far as he can tell without running x-rays, MRI, or any other test other than physical exam) and still responds to the treatment (eventually.  After being miserable for a few days.  But does he care?  No).  To me, this says that the problem is recurring.  That means something is wrong and it's just going to keep coming back again and again.  I don't know if it will get worse, but without treatment to actually find and fix the problem, it can't possibly get better.

I suppose that the responsibility really is mine, and that I ought to call up my new GP (gotta meet her sooner or later anyway) and be the squeaky wheel.  SIGH.  I'm not in the mood to be in more pain though, and that's what driving, sitting, and then being poked and turned and bent will do.