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."

10 January 2011

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.

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