Friday, July 9, 2010

Wake me up before you go go.....

No really.....Wake me up!!

I swear for the life of me I cannot wake up early anymore. What is my deal?

I always set my alarm for 7:00am so I can get up and take my pills, but for the past few weeks I have been falling back asleep. I am so tired lately.

I used to be a mover and a shaker and was up at 5 or 5:30 for the gym. I know those days are gone. But these past few weeks getting up at 7:00 has been tough. Hmmmm.

I regress back to what I always do. Am I really this tired or I am being lazy? Am I a tad depressed or am I really just tired. I am a self blamer (working on it) and a self professed control freak, so I tend to need to analyze things and understand them rather than accept them sometimes. I think nursing school put the cherry on top of the control freak Sundae. Before nursing school I was a lot more artistic and free spirited (actually lived on the beach, as in "in a tent" in Hawaii for 6 months before getting a house) then my brain began to compartmentalize things and my life became a Container Store A la Control.

To be perfectly honest, which is what this journey is about - I have been in a funk the past few weeks. Although I am really not sure why. I can't place a finger on it. It's just kinda been there like fog. Just appeared and at some point will dissipate I'm sure.

Yesterday I did have an off day. It was B12 and Methotrexate day. I do my injections once a week so that I'm used to, but everything was kinda just going right threw me. I think I felt kinda weak, which I am sure exacerbated the fatigue. I don't do well with fatigue. Goes back to the control issues and type A. The only good news about that is my husband brought home Culver's (a hamburger - custard joint here in AZ) and I mowed it down like nobodies business and still lost two pounds.

It was one of those days where you take your pill and then an hour later you are waving goodbye to it as you flush. Perhaps that was TMI - but that was my day. I also read a story the day before and it really affected me. It was about a lovely young woman with the Big S. She had been living with it for 10 yrs with relatively no huge issues (like myself) and it was that last year. It got her. Her skin gobbled her up and the fibrin turned her lungs into raisins and she passed away at 40. The story itself is heartbreaking but I think the thing my brain latched on to was the 10 yrs.

Everywhere you read on the blogs you see most doctors tell their patients, probably 10 years (although sometimes you see 5) I have a few Sclero friends that were told just that, and we all think - Says you! And many have lived past that, but then you read the story where that mark is met. And it opens up a little piece of your resolve that I think forever stays broken. I also have a friend named Janice. She has had the beast for 8 years, this is her 9th year and this is the year she got PAH and is now on 24hr oxygen. Too close to that 10yr mark for my liking.

Perhaps that story is lingering with me like an unwanted shadow I cannot shake. I feel like I have a layer of film on me I need to peel off. I think what it is - today I feel as if my life is a sunburn. Everything just feels TOO much. My reality is just too real today.

I think when I am having good days or feeling fairly well, your mind goes into sleep mode. Like a computer that hasn't been used for a while, the screen goes off and takes a rest. That is where I am when I feel ok. I am off screen and although I know the reality is, I have this disease..It's not filling up my screen all day.

When I blog, its almost as if I am blogging about the otherworldly me. A twin Stacie a few spaces removed. I feel for her and I know its happening but I am a tad busy living right now to address her.

But today is a day that the screen is lit up and everything is right there in print in your face to read. Today is one of those days where it hits you and for a moment you remember its all real. All of it... these moments passing are the last I will see of them. Its all real, no dress rehearsal, it's all happening now like it or not, and it includes the Big S and the future(s) it may bring.

I don't think the other days are denial per se' - I think they just aren't sun burn days. You can take a shower and put on close and sit on rough chairs without really feeling any of it. You are just doing..... its real, its happening, your just not feeling every second of it.

Today is the day that I am really feeling it all. Not physically. I feel pretty darn good today - just emotionally. I guess I am allowing it to fill me up in all the deep places today.

Anyway - I better go run errands. I have a life I gotta live!!

Plus, I never got that damn pretzel.

May you feel everything you are suppose to today at be at peace.

Love ~

Stacie

1 comment:

  1. You always manage to get out exactly what I am feeling, but just too tired to say or explain. Thanks for posting.

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