Wednesday, September 23, 2009

My sleep schedule, my theory, and a song I composed about coffee

This is such a strange disease, fibromyalgia.  It seems to control my sleep schedule.  I used be a morning person.  I loved having the world to myself at 6 a.m. with my cuppa-coffee, and my journal, and my Alanon book, soaking in the natural beauty.  Even younger than that (college) I used to pop out of bed like toast from a toaster, and simultaneously opened my eyes.  I was so happy to be alive and so excited to be in charge of my life, to see what the world had for me that day. I felt like I was on a great adventure. I lived by the saying:  "Early to bed, early to rise, makes one healthy, wealthy, and wise."

Now I am the total opposite.  I cannot seem to force myself to fall asleep before 3 a.m., and I can't wake up before noon.  Today it was 4 a.m. 'til 1 p.m. My pain is lowest and my energy highest from 11 p.m. to 2 a.m. and my brain is most active then. I have tried to change my sleep schedule, but it always goes back. When I do wake up it is slow going.  It is the time of my highest pain level and, while I keep feeling like I should be doing something constructive, I just can't.  It is a huge chore just to make my coffee.  I love this coffee maker though, because I can set it up the night before and wake up to fresh, hot motion-potion.

I have developed a theory about all of this.  I think it has to do with barometric pressure.  I need to research it more, but I bet the pressure drops at night.  I do know this: when the pressure is building up to a storm I always feel my highest pain level ever, then, like someone flipped a switch, I will suddenly feel an immense sense of relief.  Within seconds of that the first raindrop falls, or the first lightening flashes, an I say, "Oh, that explains it."  So this makes me wonder if I would find some relief or cure sleeping in a hyperbaric chamber (--like Michael Jackson did. I would bet he had fibromyalgia - undiagnosed) .

And  now, as promised,  THE COFFEE SONG!  I made this up for some neighbor girls I babysat.  To be authentic it must be sung in a very strong hillbilly accent.

Oh, I'm movin' slow this mornin'
I haven't had my drink,
The one that gits me goin'
and helps my brain to think.

I drink it in the mornin'
and sometimes through the day.
Gotta have my cuppa coffee
to send me on my wa-a-a-ay!

I just love a bit of silliness. Don't you?

Friday, September 11, 2009

Just coping today

My pain level is sky high.  Not the worst it's ever been, but getting up there.  I just gave in and took a T3 (codeine)  I am wondering if my pain is really worse these days, or is the Ultram no longer giving me the relief it did.  I am tending to think the first is true because I am aware that my stress level was extraordinarily high for an extended period of time this year, with little release or relief available.  I do what I can with what I have, particularly a lot of meditation, but also probably too much eating for comfort and distraction/entertaining myself.  I need a fun vacation.  But that's not going to happen.  Other ideas need to come to me. I guess I'll go meditate on that.

Tuesday, September 8, 2009

More of the same, and some new ATCs

Again today, I am in so much pain I have hardly been able to do anything.  Took the dog out a couple times, microwaved a meal, filled out forms for the new place I am hoping to move into.  I lost energy to scan them into the computer to send.  I got page one on the scanner bed.  The thought of running back and forth, lifting the top, turning and positioning pages, back to the computer, open the program, follow the buttons down, click on the right one, then click again, then again.  Back over to the scanner.... for each and every page. I  took a codeine. We'll see if that helps.  energy-low. stiffness-high.  bummed out about how much I want to do, and can't. I made 3 new ATC's last nigh that i am vey pleased with:

Sunday, September 6, 2009

My rating scale

Today I am in lots of pain. I'm also pretty stiff, and fairly low energy.   I hate the 1-10 scale. It is hard to figure out where to say I am in relationship to the worst possible pain I can imagine (10).  And Fibro is much more than just pain.  The main components that interfere with my functioning are pain, stiffness, and energy.  (There are lots of other symptoms that are annoying.)  They seem to operate independently of one another.  I find this odd -- unexpected.  It is easier to rate pain in relationship to my functioning. At my worst I cannot get out of bed except to shuffle to the bathroom if absolutely necessary. I cannot open my medicine bottle, or turn on the computer, much less type. Worst of all, I can't make my coffee! - lol.  That's MY 10.  Sometimes my pain will be high, but my stiffness low, and my energy high, so that I am frustrated about feeling like I want to be active, but can't find anything to do that is comfortable, painwise.  But these are not such bad days because painkillers help me to function.  Sometimes my pain level is low, and my energy is high, but so is my stiffness, which also feels like I want to be active, but there is nothing to loosen the stiffness.  Exercises or stretching are a crap shoot. Sometimes they help, but more often, they flare me up.  Then I end up in bed for 1-3 more days.  I have read that this is common for fibromyalgics.  So if I am lower pain (usually it takes painkillers to get there) + high  energy + high stiffness, that's a good day to go to Barnes and Noble or use a scooter cart to grocery shop.  Occasionally, my stiffness is low enough I can shop for a while under my own steam.  It's hard to gauge.  There were times when I thought it would be okay to walk, and suddenly I find myself at the back of the store unable to take another step. 
That's enough for now, but soon I will talk about the relationship to weather I have noticed, and my very very odd sleep schedule.  Meanwhile, here is some artwork Idid recently:
It's a mandala done with sparkly gel pens

Thursday, September 3, 2009

My First post to this blog.

If you're reading this it is probably by accident, cuz I can count on one finger how many others will care about what's on this blog.  Still, it has a purpose for me, which is to track my symptoms and try to figure out what the heck this damn disease- oh, excuse me, "syndrome"- is all about.  They don't know the cause and don't have a cure. I have had fybro for much longer than when I was diagnosed with it, which was in 2000. By then I was disabled (i.e. no longer able to hold down a job) and bedridden about 80 per cent of the time.  It has been a gutwrenching challenge to adjust to being disabled, and to help my children through the adjustment as well.  It has been a rocky road for all of us.  More about that later.  At this point, all of that is a memory, and is many memories.  Still, on a daily basis I am learning how to cope, and figuring out what to do with my time.  One side-effect of my illness is my art.  So as I write about my life since fibro, I will also share my art.  There was a time I became enamored with faces, studying them, working on how to express them in pencil. I enjoyed that very much, and here are some samples of that work: ( you can click on each to see a larger, clearer image)