A little off all day

Yes, it’s another pain post.  You can just skip to the next in your Google Reader if you don’t feel like sticking around.  But if you do, pull up a chair – or a couch, if you’d rather lie down! – and have a cup of tea.  Despite the August heat, I feel like wearing nice, snuggly footie pajamas, drinking a cinnamon tea, and musing while I look out the windows.

I’ve been a little off all day.  This morning started fine – much better than yesterday, when I had to muster every scrap of strength I had to get out of bed and to the potty, and then waited to catch my breath before covering those twenty-some feet back to the bed again.  It was another twenty minutes before I had the strength to hold the phone up to my head to tell maplestar not to expect my customary driving-to-work phone call, because I was going back to sleep.  And sleep I did, for two more hours.  When I woke, I hurt ALL over, and I couldn’t figure out why, because I really kept a fairly slow and even pace all weekend.  But today, though I didn’t exactly spring out of bed, I did get up (mostly) willingly when my radio came on at 6, and my hot shower felt exquisitely wonderful.

At work, I got an email from the concert band I tried to play with last year, testing the email list before the new season starts in a couple weeks.  Alas, I had trouble because the chairs were too high for my 4’9″ frame, and the flute is quite literally a pain in the neck.  But now… I can’t even play my flute for fifteen minutes, much less make it through a two-hour rehearsal on a too-tall chair.  I might be able to play piccolo, if I had a chair the right height for me.  But I’d also have a 45-minute drive each way to rehearsals, on Sunday nights.  That’s probably a day’s worth of spoons right there.  So I wrote back to him, apologizing and saying that my illness doesn’t allow me to play with the band any more.  As I sat back in my chair, looking at the words before hitting Send, my eyes clouded with tears, and I clicked the button before I could have a second thought.  I know it’s not realistic to play with the band any more.  Maybe in a few years… but maybe not.  The thing is, I’ve played flute since I was 8 years old.  Think about yourself for a moment – how many things do you have that you’ve strongly identified with since you were eight years old?  It’s probably not very many.  I can tick them off on one hand – girl, my parents’ child, sister of my sister, lover of books, flutist – and that last one is fading away from me.  Yes, I still love music.  I could never live without being able to listen to music, to sing music, to create music.  I didn’t know what a blow it would be to me to send that one email.

So I’ve been rather thoughtful since then.  I’ve recognized that I’m definitely in a time of grieving, and I have to tell you, grieving sucks.  Sue at InnerDorothy wrote back in June about how it feels strange to mourn for one’s future.  There are so many little things that I find to mourn.  I sat in the conference room today for a couple hours for an all-hands meeting with our program manager, the VP who is his boss, and the president of our division at work.  I didn’t think to bring my own chair in, but a couple hours in a “normal” chair made me absolutely miserable.  After everything broke up, I knew my boss would be schmoozing and hosting with the bigwigs for a while, so I went and lay down on the floor of his office for a little bit, to try to relax some of the spasming muscles and stabbing, throbbing joints.  I was focused on breathing and progressively relaxing when he came back in, and I apologized and got back up off the floor and went back to my cubicle.  Lying down definitely helped, though the floor rather sucked, and I felt physically better as I got back to work.  Aches and throbs returned, though, and I left as soon as I hit my eight hours for the day.

It hurts me to hold a pen or pencil and write now.  I love to keep a written journal, but my hand cramps within a few lines and I have to rest it.  If I were going to write two pages each morning in my journal, it would take over an hour.  I used to send maplestar a handwritten letter every Friday, usually about four pages inside a card, but now I just… can’t.  I still send a card with some writing inside now and then, but my hands just don’t allow me to write very much any more.

I love to read, but it hurts to hold up books.  And while I do have a couple of devices to make it easier to sit up and read – but for the whole feet reaching the floor thing – but I most love to read in bed, to unwind and relax until I’m sleepy rather than merely (merely – HA!) tired.  When I read in bed, though, my neck and shoulders cramp, and my hand and wrist tighten and cramp from holding the book.  Even when I shift position frequently, I still end up paying for it.

And though I definitely complain about it, I actually do like to mow the lawn.  But it’s not even work talking about going there.

Some days, it just feels like my brain should just be wired straight into the computer, because the rest of my body is too difficult to deal with.

So I’m mourning that.  Mourning all the things I want to do, but that are too costly for me to do any more.  There is a real sense of loss there, even though the loss is my hopes, my wishes, my dreams, my future.  Of course, it’s my present, too, as I see the light bulbs that need to be changed, the sink full of dishes, the greasy pan on the stove, the weeds almost a foot high in my back yard, the laundry baskets full of clothes that need to be hung on six-foot-high bars (remember that 4’9″ part?).

Perhaps one of the ways God can work in me to redeem this awful illness is to help me find my contemplative.  I’m always so active, and I have a hard time just being.  I’m definitely a Martha person, rather than a Mary.  But I’m being forced to be Mary, though the Martha inside me cringes at all the work undone.  But I don’t know.  I don’t know when – if ever – I’ll know what lights of redemption I will find through this journey.  I just know that God is at work, that God is present, that God loves me more than my wildest imaginings, even when I tell God off for letting this happen to me.

God’s peace be upon you, my friends.  May you imagine your wildest imaginings, your biggest and boldest and most audacious imaginings – and know that God loves you wilder and bigger and bolder and, um, audaciouser than those.  May you be blessed with sleep tonight, and may God’s light shine on you to light your path in the morning.


One thought on “A little off all day

  1. I am right there with you in your mourning. The worst part for me is when I just get used to the idea that I’ll be like this forever, and then I either flare or come across yet another thing that I used to do that I can’t anymore. The reminder and the contrast just weigh me down.

    Do you go to the forums at butyoudontlooksick.com? I know you linked the spoon theory, but the folks on the forums there are a treasure, as well.


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