Tuesday, June 15, 2010

A Day in My Life...

A day in my life…

I peek through sleepy eyes at the alarm clock that says 3:14am.  (sigh) I get up to go potty.  Well…I inch slowly to the foot of the bed as it is closer to the bathroom and means I can stay flat longer not expending as much energy.  I pray that I can stand and not need to wake Keith.  Feet dangling off the foot of the bed and realize that I can’t get up. I reach up and touch Keith’s back and whisper “Honey”.  He knows the drill.  He rolls off his side and meets me at the foot of the bed.  He pulls me up on to my feet and helps me to the bathroom.  I finish and he helps me back to bed.  It’s 3:25am.  (sigh) Stupid prednisone. 

Now I am wide awake.  I lay on my back looking up at the ceiling wondering how long before I can fall back asleep.  Keith starts snoring softly almost immediately.  Keith shifts.  I glance up and look at the clock.  It’s 4:09am.  (sigh)  Okay.  I shift and turn to my left side.  It hurts like hell to move.  My left hip screams at me because I laid too long on it yesterday…but I sleep better on my left side than I do any other way.  I cry softly and close my eyes.  Sleep comes. 

(((SCREEEEECH))) I open my eyes and see the alarm clock read 6:00am. Didn’t I just close my eyes?  Time to start my day, so as I wake up, I am still exhausted.  My muscles ache.  My joints are stiff and very painful.  My hands feel puffy as I stretch them.  GAH…my face feels like it is on fire…my hip is screaming get off me!  I continue to stretch testing the waters to see if my weekday is going to be possible.  Hmmm…stretched ok…not too much pain other than the hip…I can do this…DAMN I need to go potty.  Let’s see how difficult it is to maneuver out of bed by myself as Keith has already leaped into his day full of energy.  WOOT! The EAGLE HAS LANDED!!!  My feet made contact with the floor and I didn’t fall down…at least not yet. =)

I wobble to the bathroom and open the door.  Keith has the bathroom all hot and steamy.  The heat helps warm my muscles and I can move a little easier.  I grab the curling iron and turn it on.  Damn my hands are really puffy and stiff.  Can I even hold the tooth brush?  I try to pick it up…that’d be a hell no.  Grab the Scope and swish.  That’ll have to do for now.  I head out of the bathroom to grab clothes…I’ve decided to get dressed.  So I grab the “breastplate” that I call my bra and wonder if I am ready to wage war with the clasps.  I make a few feeble attempts.  Command control…we have equipment failure. As if on cue, Keith gets out of the shower and sees my frustration.  Quick to my rescue, he takes care of my problem.  Guess I am not wearing anything with buttons on my top or slacks.  Buckle or lace-up shoes are definitely out of question…so slip-ons are my only choice.  BOOYAH! All dressed.  Well…let’s see if I can tame my hair. It’s 6:45am.  (sigh) Did it really take 45 minutes to do all this?  I use my curling iron to smooth the flippy ends of my hair.  Okay…maybe a head band or clip will help. It’s 7:00am.  Time to leave.  CRAP!  I forgot to take my meds. 

Hmmm…I’ve been standing in one place for 15 minutes.  Can I walk?  KNEES don’t fail me now!!  Baby step. Baby step.  I can hear the song now. 

“…Put one foot in front of the other…And soon you'll be walkin' 'cross the flo-o-or…Put one foot in front of the other…And soon you'll be walkin' out the door…”

So, I grab my pill case and take out the pills from the “morning” compartment…all 13 of them…and find my glass of water from last night to wash them down.  GAH!  Water sits so poorly on my tummy…boy am I going to hurl if I don’t get some Coke in me.  I pick up my purse and head slowly down the hall…reaching my right hand out to find the wall.  Since the repeated episodes of optic neuritis have left me peripherally blind in my right eye, I have to put a hand out or risk walking into walls, doors, tables…mystical creatures.

I open Gabe’s door and kiss him bye.  I turn to leave his room…my knees and ankles give out on me…and well…how to say this delicately…help…I’ve fallen and I can’t get up.  (sigh)  Now, my body is screaming in blinding, searing pain.  I try to call out to Keith and all I can do is sob.  Gabe wakes up and yells for Keith.  So…he helps me up and ushers me back to bed.  Gabe brings ice packs and the heating pad…and Heather’s laptop so I can email work to let them know that I can’t make it in.

I lay there feeling like a failure.  This used to be so easy.  Something I never had to think about.  Something that “normal” people do every day.  Something I miss being able to do.  Something I would give anything to be able to do again…without pain…without getting tired so easily…without being sick. I close my eyes for just a moment…and it’s now 1:00pm.  Huh?  I only just shut my eyes. (sigh) Guess I am kinda tired still.  OH GOD…my tummy…churning…I eye ball the bathroom door…can I make it…do I holler for assistance from Gabe…I start scooting toward the foot of the bed. Pain shooting everywhere…adding to the nauseous feeling I already have.  It seems like an eternity before my feet make contact with the floor…I can’t get up…”GABE!!!!!!”

My wonderful son comes flying into the room and knows that I am trying to get to the bathroom…he gently grabs my hands and helps me up…he stands behind me helping me steady myself and walk.  I barely make it in before the vomiting begins.  Gabe runs out of the room to get his sister, Heather.  Gabe doesn’t do well with me vomiting.  He tends to join me. (SIGH) Heather…my beautiful daughter…comes in…clips my hair out of my face and hands me a cold washcloth.  She says that I don’t look green anymore. We laugh…and then she says…that I am green with purple spots on my face.  Great…now I will look all bruised too.

Can this get any worse?  (SIGH)  Dumb question.  Of course it can.  Next thing I know, Heather is splashing cold water on my face to help me wake up from passing out.  OUCH.  My cheek hurts. Who knew the floor was so hard and that it could leap up and hit you in the face.  (points to self…I do now!) 

Gabe comes back in and helps Heather get me back to bed.  Armed with Heather’s laptop, lots of pillows, TV/DVD remotes and a LARGE glass of Coke…I settle in to try to relax.  Heather brings me a large bowl…just in case. She’s going to make a great mom.  I still haven’t eaten yet.  I don’t feel like eating.  Tummy hurts and is very queasy.  I ask Heather if we have rice.  She nods and runs to get me some.  Since I started taking the immune suppressing meds in high doses, she started keeping rice cooked in our rice cooker because rice is about the only food I can keep down. Gabe walks in with a small bowl and hands it to me.  A pat of butter and two tablespoons of sugar…ah perfect.  He sits with me just watching TV with me waiting for me to finish…to make sure I don’t need anything…to make sure I am okay.

We start talking about the video games he is playing this week and I blink…when I open my eyes again, Gabe is gone and so is the bowl.  It’s 5:30pm.  Ugh…I hate this fatigue.  I used to be so energetic and nearly hyperactive.  I was nicknamed the energizer bunny.  Gabe hears me moving around and peeks in.  He smiles at me and asks if I need anything.  My coke class has been refilled with fresh ice and there is a baked yam with butter sitting there.  My kids know me so well that they know about how long I crash for and what I want when I wake up.  I am so blessed.

Gabe and I sit there for a little while and once I finish my yam, he takes the plate in to the kitchen.  It’s already 6:30pm and I hear the front door bell and the door open.  Keith’s home. =)  He comes in and kisses me and can tell by looking at me that I had a rough day…he tells me how beautiful I am and then says I should probably take a nap before bed time.  That would be a HINT HINT…you look like tired crap and you need rest suggestion.  (SIGH) I ask him to hand me my evening meds, plus the pill bottle on top of my desk.  I take 17 pills…including my anti nausea med…now I will sleep all night…provided no one wakes me up after midnight.

Where did my day go?  Tomorrow will be a better day…at least I hope it is.

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