Category Archives: fibromyalgia

The Theory of Everything 

Not my title I’m afraid, Stephen Hawking’s….It’s 6:02am and I have been watching this movie for the better part of an hour or so. I turned it on because I have been waiting and wanting to see it. And in the wake of my exhaustion and insomnia it seemed perfect at the moment.

Whooping cough, everyone who is vaccinated is vaccinated against it, yet somehow this highly contagious disease has made its way into my house and my lungs as it were. The doctor said that it’s becoming more frequent to see things like this pop up, but that didn’t make me feel any better. It’s frustrating to have something that I’m protected against and that my kids are protected against, attack our immune systems because they have been given the capability to mutate do to the people nor taking vaccine seriously. No this isn’t going to be an antivaxxers rant, I’m just pissed off. I have to listen helplessly as my sprite coughs his lungs up. And I have to watch quite helplessly as the watch me not be able to function because my whole body is wracked from the meds.

Now, generally medication is supposed to make you feel better. But if you put all my autoimmune crap together and add a dose of antibiotics and steroids, I am done. My immunodeficiency made it easy for me to get sick, it also makes my immune system terrible and not want to fight back. Antibiotics are supposed to fight the bad things but the end up fighting the good ones too and steroids just lower the ability for the body to fight anything. 


Everything I am sick, I feel like I am doing something wrong. Now I know there is nothing I can do, not my fault in getting sick. I have two kids, kids get germs, I get sick easily. But when you’re doing it alone, you feel like you have to be healthy all the time. Now I know that’s impractical but it’s the way my brain works. 

I’m in pain enough already,  my fibro flares are daily, the migraines come and go, the exhaustion is constant but I push through. I soldier on because that’s who I am, I am Supermommy.But right now I’m tired, my lungs kept me up last night and I fell asleep on the couch because it was more comfortable than my own bed.

I feel awful because one kiddo is sick and the other isn’t. We’ve been told medicine and fluids and rest. One wants to play and the other to sleep, I am on the precipice of passing out all the time. The meds are rocking my body so very hard. I don’t want to and can’t let myself rely on anyone, not like I used to. It seems to me, sometimes, that I also fail at relying on myself.

I just want things to get better. I guess somedays, I still try to wish away the pain. The exhaustion. I disorders. I try to dream away all that’s gone wrong. I want to wake up feeling good again. I hope that maybe after my surgery I will be able to do that. I’m not putting all my ducks in a row, or my eggs in a basket or whatnot. I’m just hoping that maybe,one day, there will be a way to jump-start my body into producing more spoons. Into making it want to function.

This movie is drawing close to a close, it’s heart-wrenching. His story though, I know, still goes on. As does mine. Hmmm, funny that is, never thought I’d have something in common with the brilliant Stephen Hawking. But we both have stories to tell. 

I’m here for you. For as long as you need me.

I was going to go into detail, tell you of my story but right now I can’t. I can’t because you don’t need to hear my story right now, you need to hear that I will understand yours. If I can’t understand you, I will listen and empathize. I will give you my hand, lend you my shoulder and certainly be a sounding board. I chose these pictures for you because in them I saw my past, I saw my friends, I saw my struggles and I saw the messages I needed so long ago. The reason I became who I am today, I wanted to be the person that I never found so long ago. So these are for you and me.

I am here for you. For as long as you need me.

Sparkles,

Shaye

Xoxo

 

Decompression

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People wonder what I do all day, a woman on disability, a single Mom on welfare, a transplant who after 5 years can count her closest friends in the area on one hand.

People don’t understand why work is so hard for me. Why I can’t keep repetitive motion in my arms, why I can’t be on my feet for more than 15 minutes. They want to blame my weight.

My weight which I have no control over, but I’m working on. My fibro which I have no control over, but I’m working on. My getting sick all the time, which I have no control over, but I’m working on.

So what do I do all day?
I get up
Get the kids off to school
Go to therapy, physical therapy, occupational therapy, aquatic therapy
Followed by more therapy
Then make some calls and/or do some homework
Then maybe shopping or an appointment
Get the kids (or just one kid on m or w)
Do homework
Pick up other kid
Possibly some errands
Homework
BSC comes over/prepare dinner
Wind kids down
Say good night’s
Explain why they can’t sleep in my bed
Say good night’s
Start my own hw or cleaning
Send kids back to bed
Go back to doing my stuff
Explain why kids can’t sleep in my bed
Finally finish my tasks
Take meds
Lay down and hope to sleep
Lather Rinse Repeat
Add in chaos, stress, bills and pressure and that’s my daily routine.

Sometimes I decompress, I deserve to decompress. Even if that means laying on my best friends couch, watching kitchen nightmares while she paints her face.

Everyone deserves a few hours of me time

Shaye
Xoxo

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It Takes a Village

They say that it takes a village to raise children, but what about when you don’t have a village. What about when it’s only you? What about when you think you have done something right and then you realize that you may have made a mistake, screwed it all up and it not only breaks your heart but it breaks the hearts of your children too.

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My kiddos were too young to know when their father and I split up. They never grew up with them until my oldest was four and my youngest two. Even then he wasn’t a constant in their lives. My Wolf was the constant from the ages of 3 and 1 to just about 7 and 5. They knew him, they trusted him but I was comfortable and I knew that the relationship wasn’t going to come to any sort of fruition. Then there was the Demon, for lack of a better name for him. I was sure, totally sure about him, he helped take care of me when I was a sick 17-year-old for fucks sake, but his alcoholic and cocaine fueled rages at me when the kids took to bed proved too harsh on me and I had to let him. The next day Charming rode into my life, and he was home. He was everything I knew about home. He was the first man I ever truly gave my whole self to. That self-was whole in the least, it was broken fragments and I wasn’t ready to be the woman he needed me to be. I lied…A lot. To protect me from hm and to protect him from me. Because I was scared. He took to my family quite quickly and made promises of forever, but forever wasn’t as long as it turned out to be. A year and a month later and it’s over and he’s gone.

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I wrote this to a friend today and I think it is quite pertinent to my situation –

The hardest part about being a single mom is the fact that unless somebody’s ready to be in a relationship with you and your children there can never be a clean break. It sucks to think that every person that I’ve had in mind and the kids live excluding friends has been able to walk away with the peace of mind and the children’s hearts and they don’t realize what can be causing it. It sucks to think that somebody can put that much damage and that much heartbreak on my kids lives. I love all of my friends for sticking around and all of my friends for taking all of the roles they have in the kids lives because we’ve basically spent nine years alone. But I think I just want to find someone eventually one day that’ll be able to keep the promises they made for the kids and not leave them as broken as they’ve tried to leave me. Is that ridiculous or does that sound like something I can be Wishing on a Star for because honestly I don’t know at this point?

It’s the truth….It takes a village, even if that village is spread over the internet community.

Shaye

xoxo

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This is NOT a Love Story

The first of many books I stated, let me know what you think

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This is NOT a love story! And what I mean by that is that this is some mushy gushy story about love triangles, about some guy or girl shaped my world or any of that nonsense. Though if I really think about it those aspects are in there. However, this is NOT a love story. I will not let you categorize it as such, much like Disney categorized Frozen as a sisters story when it WAS a love story. This, at least I think is more of a suspense thriller, but most people would disagree…Granted most people can’t see inside my brain. Hell I can’t even see inside my brain. Ok off track here a little bit. Anyway, now that we are clear what this isn’t, let me tell you what this is.
This is MY story; yeah get your chuckles out now. I know what most of you think of me, even some hell probably some of those who I’ve chatted up in the grocery store line. I know what you’re thinking. And no, I am not a conspiracy theorist or any of that nonsense, I just know what mask I where when and how people judge me in relation t such. Hell, I’ve burned some of those masks years ago and people still remember them. They are seared so hotly into people’s brains that I will never be who I am today but always who I used to be. So, this is a story without the mask, or at least I hope I can be brilliant honest and make it through. This is the story I should have typed a thousand times in a thousand different ways and I didn’t…
I have a lot of good excuses why I didn’t, but nothing that really gets me out of it. I have 5 fucking stories on my computer, 5! And they each have at least 2 chapters…One of them even had a PROLIGUE! And they are genuine stories that I hope to finish someday, but I can’t put my heart back in the place it was when I was writing them, does that make sense? Ok so by now you know that in person I have many masks, I make a lot of excuses and totally judge books (and movies) by their cover (and tag lines…see first paragraph). Let’s add to the stack shall we? I often go off on tangents that no one can follow (be prepared), I can be very sexual and potty mouthed, and sometimes I just out and out lie…Granted I think it’s more of a retelling of the story in a more fanciful fashion but when push comes to shove, I lie. If you have to ask why at this point I would tell you because I like to. See I told you a suspense thriller would be more my story.
So here I am baring my soul, to the world. Or at least I hope to. In this story that is not about love, though there is love in it. A story full of stories, full of unheard truths and confessions. Maybe I’m repenting for some bad shit I did in a past life, but all I got from all the oogie boogies down in New Orleans where that something really bad happened in a past life but they couldn’t tell me. I think I am writing my story because it is time, or that I am running out of time. No I am not suicidal, I am literally running out of time, I was supposed to write 50,000 words by the month of December and as of right now my word count is 607. I think if I can pound out 50,000 words in two days I would be incredible proud of myself but incredibly worn out. But I made a promise to someone in New Orleans that I would finish a book by the beginning of this year and I broke that promise. I hate breaking promises. So now it’s time to promise myself I will finally finish what I have started. For once in my life have something to look back on and say hey you…look at that, not only do you make beautiful kids, bake a mean apple pies and have a gay harem that puts the world to shame…but you wrote a fucken book. Go team you.
Now that I have gotten a minor introduction out of the way I guess we should start with my childhood right? I don’t have a lot of memories as a kid, but I have flashes of them, if that makes sense. I look through photo albums and I know faces and names and not a lot of details. Every once in a while a very clear memory will pop up in there and I will blurt it out, but those memories are so sporadic, sometimes I wish they would either stay or go away completely.
©S.R.Gray 2016

Writing a book

What do you do when you feel like your soul has been ripped in two? You write…at least I wrote or try to. I have written a lot of little things in the past few years, I ham going to show you all of it. Because I will now hide my thoughts, feelings or actions anymore. I have to start to live. at 32 it’s hard to do that when your heart is shattered by the person that taught you how to love. That your kids call Daddy. But I will be ok when the tears dry up. or i can find a new bottle of glue and duct tape.

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The Answer You Didn’t Want

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You sat there in the chair shifting. The cushion was not comfortable but it wasn’t the worst you’d ever deal with. You waited as the papers shuffled on the desk and he turned to face you. Quietly the little boy with the big brown eyes was playing with the blocks. The noises made the silence worse. Shuffle shuffle, click click, unidentified sounds from that beautiful boy. Finally he turned, you dug your fingers into your legs to keep from shaking. You already knew the answer but you needed to hear it from someone who could tell you that you weren’t crazy. He had a PhD, he knew crazy.  Autism, Aspergers to be exact. Along with Sensory Processing Disorder and anxiety. You lips pressed together so you don’t cry. You knew what they were going to say, but hearing it was a slap in the face. But 4 years later you’re still ok.

Tap, tap, tap….fancy pen on a fancy leather shoe. Your under a microscope. He won’t tell you what’s wrong. Claims he doesn’t know. But you already heard the answer, because you’ve been living with it for years. But you needed to hear him say it. Say that you were bipolar and borderline. And he refused. So you broke his mug. And when you were finally ready to hear the answer, it was still a stinging mark across your face, because it wasn’t supposed to be right. 3 years later, you’re still alive.

Over and over this happens. It feels good and bad at the same time. Vindicated but what the fuck are you supposed to do now?

Now…When you need answers. When the bloods come back highly abnormal, you get nervous. And it’s not nervous that they will find something but more nervous that they wont. You are tired, swollen and drained. So they had scheduled another test. And you pray something pops up. Because in all your years …Nothing has. It’s hard to fight an invisible disease when you can’t find it. Sick and tired of being sick and tired. So you hope they find something. So that you won’t  have to suffer without reasons…

But you realize in this moment that this may be the one answer that you don’t want to have already answered.

Food for thought
Shaye xoxo

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Habits

They say that old habits die hard. And that you can’t teach an old dog new tricks. I bought into these theories until I realized that…Well they weren’t true.

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Thinking about it now, it’s 6am-ish, the whole house is sleeping except me. I went to bed around 2am. I am, for the most part, alert and able to function semi normally. On 4 hours of sleep, which if I looked at my fitbit app would probably tell most of it was restless, I am of sound mind and body to do things normal people do at normal times.(ie. Pick up meds, head to work, go for a jog). But if I were to lay my head down right now and fall back asleep, if I woke with Charming ‘ alarm in an hour, I would not be able to function for quite a few.

Now that I’ve gotten through that train of thought let’s try another one, shall we? The whole point of this blog was to get me on the path to actually putting out my book, now granted I have  started 4 different projects, came up with a bunch of creative ventures I think would be write up my ally, I still struggle with this book thing. And I think it had all to do with my habits.

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I love to start projects, but if I can’t see where they are going I can’t finish them,  for example I wrote a piece on depression I want to submit to elephant journal. I got some great tips from a gal who writes for them. Incorporated those changes in my brain (and may or may not have stick a quote from Cool Runnings in there) but have not physically changed it yet. I have a list of topics I would love to share but I just…haven’t gotten there. I finally found my muse with a story I believe in, one written in a notebook with a pencil but because of winter break and dealing with life…it’s sat at my tea table of writingness for days pouting at me.

Now, I can sit here and tell you I’m lazy and most people would agree that i have that streak. But others, ones that knoe me best will tell you I’m habitually scattered, derailed, manic even. Some will say it’s the depression and I will tell you it’s all of the above. But I’ll fill you in on something else. I am habitually the Cowardly Lion that lives in Oz. More often then not I don’t think I can do it as well or better that I should.

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And a narcissist being a coward is more common than you think. Which brings me to my next point. I am NOT a habitual narcissist. I happen to be one everyday. It’s weird and screwed up and I have tons of things I will ok one day write about it, but just know that all you think or read about someone with that diagnosis isn’t always all true…and it fucking hurts.

I habitually hurt people and I don’t mean to. I’d blame the borderline, but Marcia Linehan would say that’s not very dialect of me….and for all you BPD out there that found that funny…you’re welcome.

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This post took itself in places I am not sure I was going for, but it’s 650am and Charming has an alarm that will go off soon enough. I get to spend the day with the Yang to my Grey and the Pixie.

The great part is I get to just be me. No hiding, no mask, just me. But I have to leave the house….I don’t like doing that anymore….and that’s a habit I need to break.

Till next time lovelies
Shaye
Xoxo

Facebook – http://facebook.com/undertheguiseofglitter/
Twitter – @NOSGLITTER

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How Cool Am I?#

AHHHHH! My college newsletter wrote about my Elephant Journal article!!!! It’s on the FRONT page of the newsletter!!!!!!

Check it out!!!!
Elizabethtown Newsletter

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Waiting…

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32 years old

32 years old
Sitting in a waiting room

32 years old
sitting in a waiting room
Tears on her cheeks

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tounge

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear
She was only 3 minutes late

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear
She was only 3 minutes late
And she called them to say so

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear
She was only 3 minutes late
And she called them to say so
They said no problem

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear
She was only 3 minutes late
And she called them to say so
They said no problem
But there was a line

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear
She was only 3 minutes late
And she called them to say so
They said no problem
But there was a line
So when she gave her name

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear
She was only 3 minutes late
And she called them to say so
They said no problem
But there was a line
So when she gave her name
She was 16 minutes late

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear
She was only 3 minutes late
And she called them to say so
They said no problem
But there was a line
So when she gave her name
She was 16 minutes late
So now she’s waiting

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear
She was only 3 minutes late
And she called them to say so
They said no problem
But there was a line
So when she gave her name
She was 16 minutes late
So now she’s waiting
As the line has come and gone

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear
She was only 3 minutes late
And she called them to say so
They said no problem
But there was a line
So when she gave her name
She was 16 minutes late
So now she’s waiting
As the line has come and gone
And it hurts to sit, to stand, to breathe

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32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear
She was only 3 minutes late
And she called them to say so
They said no problem
But there was a line
So when she gave her name
She was 16 minutes late
So now she’s waiting
As the line has come and gone
And it hurts to sit, to stand, to breathe
But she sits quietly

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear
She was only 3 minutes late
And she called them to say so
They said no problem
But there was a line
So when she gave her name
She was 16 minutes late
So now she’s waiting
As the line has come and gone
And it hurts to sit, to stand, to breathe
But she sits quietly
With tears on her cheeks

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear
She was only 3 minutes late
And she called them to say so
They said no problem
But there was a line
So when she gave her name
She was 16 minutes late
So now she’s waiting
As the line has come and gone
And it hurts to sit, to stand, to breathe
But she sits quietly
With tears on her cheeks
In the waiting room

32 years old
Sitting in a waiting room
Tears on her cheeks
Trying to bite her tongue
Because the pain is too much to bear
She was only 3 minutes late
And she called them to say so
They said no problem
But there was a line
So when she gave her name
She was 16 minutes late
So now she’s waiting
As the line has come and gone
And it hurts to sit, to stand, to breathe
But she sits quietly
With tears on her cheeks
In the waiting room
At 32 years old

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