Blogging Against Disableism Day: On Being Able

"Ableism."  Sometimes also called "disableism."  They are words my spell-check doesn't recognize.  "Disableism" isn't in the dictionary, though "ableism" is.  You might notice that the suffix "-ism"... it is the same one we add to words to get "racism" and "sexism."  The Oxford English Dictionary defines "ableism" as discrimination in favour of able-bodied people; prejudice against or disregard for the needs of disabled people." 1

Ableism incorporates many, many things.  I encourage you to read other posts about (dis)ableism by checking out the other Blogging Against Disableism Day posts.  Posts this year and previous years discuss discrimination against individuals with disabilities via reasonable access to public places, right to education, appropriateness of health care, mobility equipment, insurance, and doctors, and language use.  If you will bear with me, I'd like to take my post today in a slightly different direction.

The definition above may lead you to think of things like giving a job to an able-bodied person as opposed to one with a disability, or not providing ramps or working elevators (a rant for another time).  Today, I'd like to address a different "disregard for the needs of disabled people"

The need to be allowed to do the things that we can do.

This is one of the things that is most frustrating to me as a person with a disability.  Sure, there are many things that I can't do or chose not to do.  But I like having the right to choose for myself.  This is perhaps better explained through examples:

I was shopping with my mother yesterday.  I love my mother and know that she really just wants to help me and take care of me (she hasn't gotten over the fact that I'm an adult and struggles with my disability, perhaps more than I do).  We were at the store and, first, she encouraged me to use a wheelchair.  I had my crutches and was doing well enough, with enough "spoons" (energy to do stuff) to go around, and declined.  She gave me the same look she's always given me when she thinks I'm just being stubborn.  When we had finished shopping and were heading to check-out, she gave my little sister the keys and sent us out to the car so that I wouldn't have to stand any more.  But it wasn't that we were given the option of going out to the car, we were sent.  And we were sent purely because I have a disability.  I feel like I wasn't respected in my choice to use crutches instead of a wheelchair and that I wasn't given a choice as to whether or not to stay in the store or go out to the car.

On many instances, I have had people take what I am carrying out of my hands to carry it for me, even when I have said that I can do it on my own.  I know that I appear to be struggling, but this is, in my opinion, akin to asking a person in a wheelchair if they would like a push, and then ignoring them when they said "no," pushing them anyway.  If an able-bodied person had declined having someone help them carry something, they would have been left alone, but, with a disability, my desires were not respected in favor of what someone else thought was best.

In my schooling experiences, I have had several times when people have introduced an activity and told me that I "don't have to participate."  That I "can just sit and watch."  I have been ordered "not to get up."  Instead of giving me the opportunity to choose whether or not to participate as I am able, I am already judged not to be able and had to argue or insist to be allowed to take part.

One of my very most favourite quotes is attributed to Helen Keller (and, I believe, a variation of a quote given by Edward Everett Hale) and reads as follows:

"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."

As an individual with a disability, I know (or am learning) my limitations and, in short, what I can and cannot do.  No one else can ever know this in the way I do.  That makes me the one and only expert on myself and my abilities.  I ask for the same respect awarded any other able-bodied individual: the right to choose for myself.  To be given the same opportunities as everyone else in an everyday situation and to choose whether or not to do something as any other person would be given that choice.  And the right to have my desires respected.  To do otherwise is discrimination based on perceived ability or disability ... it is (dis)ableism.

1- "ableism, n.". OED Online. March 2011. Oxford University Press. 18 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.

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!

Check out Wikipedia's article on DSPS and other circadian rhythm sleep disorders.

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

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.

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.  

New Year Thoughts pt.1: Response to "My Life in Pajamas"

I've been doing quite a bit of pondering lately.  The change to a new year always causes me to ruminate on the past year and contemplate the year to come.  I've intended to write this post since January 1st, but clearly I haven't yet, as it's now late on the 9th and I'm just starting.

Yesterday I published a post on my knitting blog about my new year's knitting resolutions.  Resolutions are something that I am extraordinarily bad at keeping, so I normally don't even bother to set them.  But I have set knitting goals for this upcoming year, and I'm reasonably sure that I will keep them purely by default.  But resolutions in other areas of my life are harder to set, because I know I'm ridiculously stubborn and that life is . . . unpredictable.

I could set goals about getting rid of the weight that the Lyrica caused me to put on, cutting down on my candy intake, going to bed at a decent hour and waking up in like fashion, and then getting up out of bed and getting dressed, as opposed to spending the whole day (or at least most of it) in bed in my jammies.  But I know myself.  I know that exercise and my million diagnoses and I don't get along, that I love chocolate have tried cutting back before and simply don't want to give it up enough to actually do it, and that I can never count on falling asleep by a certain time and feel better when I get more sleep anyway, even if it means falling asleep at six in the morning and sleeping until two or three in the afternoon.  But the jammies . . . well, that is an issue.

This past week, I read Abeeliever's blog post, "My Life in Pajamas," and have been thinking about it a lot lately.  How often am I still in my pajamas when my husband gets home from work?  I always feel guilty when that happens.  It's like waving a big flag that says, Hey!  I accomplished absolutely nothing today!  And while I know that's not entirely true, I know that I am exceedingly more productive when I do get dressed before noon and put on my shoes.  Even if I do go back to laying in bed, I feel less like a slug and more like a human being. 1   

I've spoken with people before who have said things to the extent of, "I would spend my whole life in my pajamas if I could," to which I have responded, "It's not all that it's cracked up to be."  I'm frequently asked what I mean by that.  Sure, pajamas are comfortable and cozy, even comforting.  But when you've spent day after day in bed because you don't have the energy to get up, because the pain caused by getting out of bed is agonizing, and because these things are completely out of your control, then I, at least, begin to associate my pajamas with being at the mercy of my disease . . . being powerless.

As Abeeliever wrote, "It is what the pajamas represent that's important here."  So what do they represent for me?  They're a daily reminder that I have a chronic illness and that my life is no where near what it used to be.  They represent the effort that it takes to do "simple things," like showering and getting dressed.  But they also represent "giving up."

While I know that there are some days where staying in bed is absolutely the best thing for my health, I do think that there are other days when I stay in bed because it is easier to stay in bed than to fight my body to get it to do what I want it to, but I also know that staying in bed is not the best thing for me in other respects.  I know that I feel better emotionally and energy-level-wise when I get out of bed, get dressed, and do my hair.  But each day I play a guessing game as to whether or not I have the energy reserves to actually get to that point, and I wonder if I err on the side of caution too often.  (Which leads me to another blog post I want to write.)  I suppose my pajamas also represent other things not accomplished, like writing this blog post ten days after the new year, when I originally intended to write it that day or the next.

So maybe I do need a resolution here.  I'm not sure what, yet, but I need a change.  This is a new year, a representation of new life, and I do have a life to live.  And "life in pajamas" is not living it.

1- I then wrote the following comment: "I'm not sure where I'm going with this.  It's almost midnight, and I know better than to publish something after I've taken melatonin.  Hmmm... well, I'll let my mind try to sort this out as I pretend to sleep.  More tomorrow."  The rest of this post was written the next morning.

What's in a Diagnosis?

Diagnosis.  For me, this is a very complicated word with a very complicated history, and I wonder how to begin... at the beginning, I suppose, but just where/when was that?

We might say it began when I was fifteen, ten years ago (2000).  I was in high school and finally hitting a major growth spurt that took me out of boys jeans and training bras into woman's size clothing.  Unfortunately, that same growth spurt made me grow six or seven inches in three months.  Not only did my wardrobe not keep up, but neither did my knees.  Knee pain haunted my days, and shadowed my later high school years.  I was diagnosed with patellofemoral syndrome, a rather common diagnosis for young women, ordered to wear knee braces, sent to physical therapy, and told that most people "grow out of it."  The orthopedist added on pronation of the foot and joint hyperlaxity in my knees and hips.  As a result of this pain, I had to rearrange my coursework, take adaptive PE, and miss out on school dances, choir trips to theme parks, and countless outings with friends and family.

I graduated from high school and started attending the local community college (2003).  In addition to the knee pain, I began to have the steady companionship of hip pain, which I blamed on the knee problem. Assuming I knew what it was, I never went to the doctor about it and kept struggling through, trying to do it all on my own.

In 2006, I got married to my wonderful husband who knew about the knee condition and the hip pain, but had no idea what we were in for.  I stayed at the community college for another year, got a fantastic scholarship, and then transferred to the local university in 2007.  The knee and hip pain that had waxed and waned in the years between began to be more and more bothersome.  I found myself more and more stiff in the morning and had increased trouble sitting, standing, and walking for any length of time.  July 2008, however, brought new challenges.  I began having trouble with my back, hands, and other joints.  The morning stiffness was dreadful, and I was suddenly discovering a whole host of things that I had done that I could no longer do because of the pain: Make a peanut butter and jelly sandwich. Go grocery shopping. Play the piano. Vacuum. Write with a pen or pencil.  I began using a cane.  Then two canes.

I went to my GP and was put through tests: poking, bending, blood work... Whatever it was that I did have, it isn't autoimmune, so it's not lupus or rheumatoid arthritis, I wasn't anemic, etc. etc.  In short, my blood work was fine.  My GP said that he suspected that I had fibromyalgia and sent me to a rheumatologist.

Dozens of x-rays, countless vials of blood, and two hours in an MRI machine later, the rheumatologist suspects that I have "hypermobility" that causes chronic tendonitis in my joints, degenerative disc disease/arthritis in the lumbar region of my spine, and fibromyalgia.  I tried pain killer after pain killer, different types of muscle relaxers, and sleeping pills.  I got forearm crutches for most of my walking and a rollator (like a walker but less medical looking) for carrying my laptop and textbooks around school.  I started getting disability services.  I became the subject of service projects with people bringing in meals and cleaning my apartment.  I've missed school, had to turn assignments in late, and battled every day that I was in school to make it through one class at a time.

Somehow I've also managed to pinch a nerve in my neck (diagnosed as myofascial pain syndrome).  I have sciatica and plantar fasciitis.  My diagnosis of "hypermobility" has vaguely expanded into a "connective tissue disorder, not otherwise specified" (CTD-NOS).  I use my crutches whenever I leave the house.  If I have to go to the grocery store, I use one of their motorized carts; I prefer to order in my groceries or send someone else if at all possible.  I get worn out easily, avoid stairs at all costs, and spend most of my time laying on my bed or on the couch.  I have had to redefine who I am, and was nearly lost to the darkness in the process.  I graduated with my B.A. in Spring 2010 and have since discovered that I cannot find a job that I can do and for which someone is willing to hire me.  I long to get my upper degrees, but, many days, the thought of going back to school and doing it all over again nearly brings me to tears.  I've been in physical therapy multiple times.  I've paid more money for medications and copays than I want to think about.  I've been on: Advil, Ambien, Voltaren gel, Tramadol, Mobic, Lidoderm patches, Cymbalta, Tylonol with Codeine, Vicodin, Skelaxin, Savella, Indomethacin, Aleve, Lyrica, and two types of antibiotics.  I've had to give up cross stitch and Tetris, among other things.

If you have a clear understanding of what I actually have, will you please fill me in?  Because I think six-or-seven-or-eight diagnoses is far to many.  OCCAM'S RAZOR, DANG IT!  Somehow all of these have to fit under one striped umbrella instead of several small, unstriped ones.

I'm still learning about my new limitations.  It seems to me that every time I start to get an idea of what I'm "up against," something new happens and I have to reevaluate all over again what I can and cannot do.  I often feel way more "crippled" then "extraordinary." But this is my life.  This is the one I have been given.  And I either have to find some way to survive, or give up.  And giving up is too hard (another post for another day), so I'm going to have to survive somehow.  And while I'm "surviving," I might as well be extraordinary.

...but I really wish I had a diagnosis.

P.S. My spell check cannot handle all these medical terms.  It keeps giving me the red-squiggly-lines of death...