Friday, November 5, 2010

Bring Your A Game

Somehow I found myself asked many questions by several Tadpoles today via email.

I appreciate that anyone...ANYONE...thinks enough of my opinion to ask me anything.

I am actually quite flattered.

I don't feel flattered very often.

Flattened? Yeah, life has thrown me on my ass this year so - absolutely, but rarely do I experience the other word with the R in it.  See how close they are?

Yeah, I am not so special.

I am going to be honest. I thought the "30 Days of Truth" would pull it out of me - but I realized in responding to all of the wonderful emails today you guys don't realize what a day for me is like. You are getting the "Good Skippy", the "Happy Skippy" - the "Breathing Skippy".  [The last one is my favorite if you didn't know.] Breathing trumps good and happy all day long.

It isn't always the case.  Life can suck.

Anyone care to know what my day is actually like?  Well - regardless of who wants to know - here goes.

5:00 am - I have slept tilted up because I can't breathe lying down. I can't roll over this morning because the pain in my shoulders, elbows, hands and knees keep me motionless for a few minutes. I start to count "1, 2, 3..." and flip over until I think I can sit up. I make it almost to the edge of the bed.  I am trying to be quiet because my husband doesn't have to be up for a few more hours, nor does my daughter who is asleep across the hall.

5:15 - I manage to swing my legs off the bed, still counting because I figure if I can count to a 5 I am good. 10 would be bad and I try to move faster.  I think it hurts less to do it in 5 instead of 10.  I play mind games with myself.

5:20 - I stand up.  Three steps in front of me is our Master Bathroom.  I can lean towards the door and grasp the handle and hold on.  Then the huffing starts.  I need to get into the bathroom for - well potty - but my lungs are so filled I have to huff for air to do this.  I actually make the noise.  I say the words, out loud  "Huff, huff, huff" just to get the air in my lungs.  I am quiet though.  Not because it would bother Pooldad but because there is nothing he can do if I wake him up.  He can't clear my lungs or help me with my stumbling - I have to do those things. Better he sleeps.

5:30 - I come back to the bed and I have to decide.  I am so thirsty I want to be in the kitchen now, but do I go downstairs in my pajamas or do I attempt to get dressed in clothes for the day.  If I go downstairs in my pajamas there is a good chance I won't get another trip up the stairs to actually be in day clothing, but if I decide to get dressed I might end up back in bed because I can't breathe.  Leaning over a dresser or walking into the closet and grabbing something exhausts me.

I have to decide quick. I need a glass of water.  I pick blue jeans and a sweatshirt.  Pulling off my pajamas makes me yelp because my left side is so tender.  I am still huffing out loud and then there comes the coughing. Cough, cough, cough.  I need to get downstairs now.

5:40 - I try and navigate my left leg into my jeans and stumble to the left almost hitting the nightstand. Curse. Cough. Huff, huff, huff...breath Skippy.  Get that foot in and sit down.  Breathe. Hard. Stick the right leg in. Stand up.  Sit back down.  Cough. Breath. Cough. Breath.  Stand up and pull my jeans up.  Look at the sweatshirt I considered - I think "Bad idea" because my arm hurts too bad and grab an oversized button up shirt of Pooldad's that is draped over the end of our bed. I can do the buttons in the kitchen when I get down there.  I sit back down and start to cough.  Now I know I am going to be sick and I have to get downstairs.  I grab a handful of tissues and spit out what is in my  mouth.  The congestion is suffocating, but I need to get downstairs.  I have to sit. Huff, huff, huff. Cough.

6:00 - Yes that took me 20 minutes to put on clothes.  There are 18 steps to navigate to the middle floor.  Going down is no better than coming up, my pain and the fact my hands are incapable of holding on requires me to use balance I don't have.  The stairs are my greatest nemesis. They scare me the most.  I put my right hand onto the wall and take one step at a time. Huff, huff, huff...and the pain is there - so in between a huff I am saying "1, 2, 3....."

I need to get to the kitchen NOW.  Keep walking.

6:10 - I am in the kitchen and shuffling to the kitchen sink.  My nose is full, my chest is screaming and I am heaving.  Dry heaves. I don't get my drink of water because I am bent over the stainless steel sink heaving, nothing, into the sink.  I turn the water on to drown out the sound that I make while vomitting into the sink [It doesn't work, ask my family, but it is the best I can do.]  After a few tries I am able to cough or blow out the congestion. It is all the water that has settled in my lungs during the night.  My ribcage is tender, my throat is killing me and I am considering whether that glass of water I wanted is a good idea.  Is that going to come back up too.  I decide against it.  I wash my face and go sit in front of my computer.

6:45 - I have been awake for an hour and 45 minutes and want to go back to my bed, except that requires stairs and my baby is getting ready for school.  She needs company and a lunch. Right.

I sit for a good while.  Check my email and then finally rise to make her lunch.  She doesn't expect it and she will do it gladly, but it is the one thing I can do.  So I do. I have learned some tricks though that would've surprised me a few years back.  I leave the fridge door open the whole time [gasp! the energy waste!] because  it is a huge effort to open and close it. It wears me out.  How weird is that.  No one points out my hypocrisy - they just let me be. If it is easier for Mom then they are fine with it.

It takes me 25 minutes to make her lunch.  I have to stop constantly to hold onto the counter or lean over and breathe.  The whole time I am saying "huff, huff, huff" under my breath. I sound like the lame ass train in the room. The one that isn't making it over the mountain.  I sometimes wonder if this is what my kids and Pooldad are going to remember. I can't really care.  It helps me breathe. So be it.

My girl leaves at 7:45 and I collapse into my chair.  And sit. Sometimes I cry.  Because I hurt, or I am so tired of throwing up.  Or that I couldn't breathe.

Around 10 or 11 am:  Now comes the better part of my day.  Having cleared the congestion I get the benefit of actually being able to breathe [almost] normally.  I have an occasional huff, but nothing like what the first part of my morning brings me.

I have a few hours of this.  I get to play on the computer [Hey! Tadpoles!] but I am incapable to do much else.  That drives me nuts.

 [Things that I have done in the past - laundry, walking the dogs have fallen to the wayside.  Most of my days are what I have just described.  It takes a great amount of effort, time and coddling of me to get me to JMU or the movies.  When I am able to do that I will brag about it.  Seems simple to everyone else, but it is the entire world to me.  I do pay the price to have those joys in my life though.  I have just never told you all.  I am now.]

So back to my day - Around noon or 1 pm I need a nap.  Here comes the quandry.  If I go to take a nap I will have to go back up the stairs.  18 stairs. Up.  Once there I will be huffing for about an hour to clear the congestion that my heart has conjured up because it worked so hard to get me to my bed.  I do take naps, I do go up there.  Here is the backside though - if I sleep for any amount of time [one hour or more] I am so congested I am repeating the morning.  I have to cough out everything that settles in my lungs.  I am dry heaving to clear the congestion. But I am so tired I need that nap.  When my daughter and husband come home I might be awake, but I will coughing, huffing and in pain, just like the morning.

My greatest fear is the nighttime. Everyone has gone to bed and I know when I make my way back up the 18 steps it will be another hour before I can breathe and lay down.  Then I have to figure out how to lay down/propped up because one side of my body hurts more or that hand can't lay this way or I have to be this elevated to be able to breathe.

When I do finally fall asleep I toss, turn and reposition myself.  The crackling in my chest makes me realize at 1 am or 2 am that I need to sit up and cough.  I do.  For 15 minutes.  I lay back down, exhausted, knowing that I will be up again at 3 am doing the same thing.  And 5 am is just a short time from then.  Sometimes I just choose not to go to sleep because I won't feel the suffocation and pain. Tonight [this morning] is one of those times.

I just realized I started this blog two years ago yesterday.  Little did I know that life was going to throw these things at me in such a short period of time.  I have always been Skippy - I will always be Skippy - but sometimes I can't bring my A game. I suck.

I am trying here Tadpoles but there are some days even I can't do it.


hed. said...

Happy blog anniversary :) You know how sometimes you want to say something because you are touched by a post but flat out don't know what to say? This is one of those times.

Hed hed down under

RV Vagabonds said...

Yeah, what hed said.

Marni said...

This breaks my heart and yet makes me realize what a truly remarkable woman you are.

Love you, honey.

colenic said...

you are an amazing person- that may not help- it certainly won't make you feel better- but it's the thought that came to my mind this morning when I read this- you come here, share things and very rarely do you let any one see this side of things- You are remarkable- and I am sorry that you are in so much pain. I blessed to know you- thank you for what you do and my heart hurts for you. Love you!

Bouncin' Barb said...

Skippy, Skippy, are awesome. I do understand how much shit you endure. Life is just not fair sometimes. I'm in awe of your amazingly upbeat and positive personality. You remind me of my husband. He was sick, in pain, and yet he always tried to make me smile and comforted me when I couldn't stand to watch him suffer. I can't tell you how much I wish I could make you feel better but we are realists. What I can do is send you a heartfelt thanks for finding my blog and letting me into your life and you into mine. HUGSSSSS.

ellen abbott said...

OMG. I only read through til 6 AM and that was enough. I don't know how you do it. You are awesome.

Phelan said...

I know all about the bad Skippy. Lived with it for several years. And I know there are days that trump the pain and tiredness. You know I am around if ever you want to BS a bit. If I can help you forget for a few moments, then I am all about it.

And the congrats card was just wonderful! We love it, thank you!

Mama Bean said...

oh skippy, this breaks my heart. your friendship has brought a lot of joy to my husband and our little family up north, and we love you very much :)

Linda in New Mexico said...

I love you sweet lady. This was incredibly brave of you to share and I know it was hard as hell for you to admit to so many, the story behind the smile. Even though I already knew, I'm sitting here with big fat tears running down my face.
The Olde Bagg

Kathy's Klothesline said...

I am without words and that does not happen often.

Khadra said...

Im crying.
Im sorry.
And Im sorry if I caused you any additional stress yesterday.

Jeannie said...

Babe - I can't imagine and don't want to. The not breathing part would have me in a blind panic. All the time.

I would also be online shopping for a nice recliner to plant somewhere on the main floor for that nap in the afternoon. (Supposing it would work for you - my husband's doc strongly suggested getting him one for after his heart surgery and I did)

And I would choose my clothes the night before and have someone set them on the kitchen table for me so I can dress downstairs after clearing my lungs.

I would definitely leave the fridge door open.

And I would never be Skippy.

I think you've played an A game if you get up in the morning. I think you're my hero.

Love you.

Life in the mom lane said...

I knew you had bad days but bad is relative... what you describe is beyond sounds impossible...

all of which makes you even more amazing to me because of your positive attitude and courage!

{gentle HUGS}

Barbara said...


I'm so sorry that things are so bad for you. It stinks when it is hard to do simple everyday things that you should be able to do.

I have medical issues, though not as bad as you I still understand. It breaks my heart to read how much you struggle in day to day life.

Rudee said...

I would like to wrap my arms around you and give you a gentle hug.

I keep hoping you'll find a palliative care practitioner in your area who can help you better manage some of those symptoms. I can't help but think that some bronchodilators and occasional supplemental oxygen would help immensely.

Not giving advice here, just thinking out loud.

Anonymous said...

This post brought tears to my eyes - I will never ever complain about anything going on in my life Skippy - thanks for putting my abilities (which I thought weren't good enough) into perspective.



Teresa - in the Middle Side of Life said...

and you call me brave? i'm nothing in comparison. i can't hold a candle to your bravery. bravo! i stand and applaud your actions, your triumphs, and your unending dedication and love for your family. hugs and hugs to you...

Diane Laney Fitzpatrick said...

Wow, I had no idea. You're brave and wonderful. Your amazingly cheerful attitude is a wonder. All my good vibes going to you tonight . . .

sapphireblue said...

I'm sorry this is happening to you. I wish I could do something.

Tessa said...

Okey dokey Skippy, you are one strong, willfull woman and I salute you. I am proud to call you my friend and realize now that the strength I have been feeling these past few days is due to you not me. Your strength flows like a river to everyone of us. Love you lots, big, gentle hugs!!!

Anonymous said...

Yeah, I'm currently counting my blessings and thinking I might not complain as much.

I'm also with Jeannie on the practical side of things...there have to be things you can do that make life easier. Keep a bottle of water beside your bed so you don't have that dilemma about getting downstairs for a drink. Does your master bathroom have a basin? Drink there, cough and clear there, you may have a chance of breathing before you attempt the stairs which can only be a good thing, right?

And thank you for giving us your energy when you can.

Me...Uncensored said...

you know what??? Everyone has a story, and if everyone understood that many of us are in a place in our life that can suck, we keep on truckin'. Skippy, keep on truckin. You are wonderful. Do not pay any attention to people that do not understand that they are not the only people on the planet.

ThisAloneIsLove said...

Oh honey, I don't know how to do it. :(

This is such a serious post, I don't want to be insensitive but you'd asked to see my tattoo (different login here, keeping the other one anonymous. ;) ):

And if you want to see, me and Morten!

qandlequeen said...

Your average day, even fully described, is so incomprehensible to me. Just cannot wrap my mind around taking a full hour to make it from the bed into the kitchen! I can only imagine your frustration.

And my dream house, the one with stairs, is a total curse for you. What a frightful journey you have to take on those stairs every day!

I'm glad you're doing it, though. You're a great presence online and I'm quite sure you're a tremendous presence 3D. This may not be your A game from a few years ago, but it's your A game now. You rock.

Hey - change your "huff huff huff" to "I rock, I rock, I rock"

Michaela said...

Hi Baby. It's hard. Thank you for giving us this glimpse into how hard it really is. (I had a brother who was sick like you are. I used to help care for him.) I love you for being as brave as you are. I love you for caring so much for your family that you are considerate and helpful, despite your huffing, vomiting and pain. Some people wouldn't behave that way. I admire you tons. I am sad ur sick, and I wish you could get better xxxooo