Fibronaut At Home

Jury is Still Out

I can’t sleep.  Apparently, the Nuvigil I took at 9 am is still affecting me at 11 pm.  Yay.

On the plus side, I did get the majority of the laundry separated into baskets for folding at some point this week.  I did get the dishwasher unloaded and everything was clean.  Hell yeah!  Washing the dishes on the cycle designed for pots and pans really does save time and water!  I didn’t have to cook dinner because the hubby brought home Wendy’s for dinner.  Then, after the kids went to bed, since I was riding a high from actually accomplishing WAY more than I thought I’d be able to do, we got a little quality time (wink, wink).  It feels like I won the lottery tonight.

I am not talking about the pain, because then it knows I feel it and I’m not giving the pain that satisfaction.  Take that Pain!

The Nuvigil worked wonders today, except for the fact that I am now, at 11 pm, WIDE AWAKE.  I’m going to listen to Bedtime Beats, The Secret to Sleep and do a jigsaw puzzle online.  That usually helps me get to sleep.  Really crossing my fingers here.  I’m not even going to think about the amount of pain all this activity is going to cause tomorrow.  You will not win Pain!

One more thing: My hubby is pretty freaking awesome.  I forget to mention that sometimes, but seriously, if I could clone him and give every single one of you, one of him, I would.  Maybe I will rent him out.  Then, I will sort of be bringing in income.  Do you think he’d go for that?  Tell me what you need done, I’ll send him over.

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Happy Halloween!!!

I know, I’m late.  I was really going to post this yesterday, but after two Halloween parties in one day, I was not feeling very bueno.  It didn’t help that I didn’t get much sleep on Halloween Eve, either, but my nails looked pretty.

Image

 

Here’s how my day went:

  • Wake up at 6:45 am.  Meds, yogurt, coffee, then drive the kids to school.  You may notice that I don’t mention getting dressed.  That’s because I take my kids to school in my jammies on Tuesday and Thursday, because Emma stays at home and I don’t have to get out of the car.  Depending on the pajama pants I’m rocking, M-W-F may also be wear-your-jammies-to-drop-off-the-kids days.
  • Rest until 9 am then shower.  Can I just say, THANK GOD IT IS WINTER!!!  Shaving is optional.  If I don’t need to wash my hair, I can be in and out of the shower in 2 minutes.
  • 9:35 am, drive to Emma’s Halloween party.
  • Help serve the little munchkins for about half an hour, until I feel faint and realize I better sit down PDQ.
  • Follow Emma around from activity to activity, sitting whenever possible.  At this point, I couldn’t really hide the pain or fatigue anymore.  Emma didn’t notice, so that was good.
  • 11:40 am, drag Emma out of the party, because I still have to drive the 7 minutes home and I’m not even sure I can make it to the car.
  • Eat a quick lunch and take a nap while Emma watches TV.
  • 1:15 pm.  Already?  For real?  I feel like I’ve slept 5 minutes.  Up and out the door again.
  • 1:30 pm, stand around and then sit around at Katie’s party, while other Mom’s Mom it like a boss.  At this point, I had Emma asking other Mom’s to help her get treats.  We walked part of the parade route, which was absolutely ridiculous, because then, we had to walk through classrooms, where kids got to see what a hot mess Mom looks like.  Plus, Emma ran into a door handle, which prompted me to sprint her through that room, which messed up the kids on which way they were supposed to go.  That room had one of those Moms who couldn’t take that and caused a traffic jam trying to get them to go the correct way.  Then we walked by the playground.  It only took about 5 minutes before I deemed it acceptable to drag a screaming Emma off the equipment.  I just couldn’t handle the cold any more.
  • 3:30 pm.  Get all the kids home.  Sit on couch, under blankets, with rotating heating pads and musical massage music on the iPod.  Rest until, THANK GOD, Grandpa and Grandma show up and take Emma trick-or-treating.  Aden and Katie did a few houses by themselves.
  • Cam brought home pizza and I only had to deal with a minimal amount of trick-or-treaters while Cam took the kids around the neighborhood.
  • 9 pm.  Blissful sleep.

Today, I hurt like a mofo.  And I’m exhausted.  But, I don’t care.  It was so awesome to just be there for my kiddos yesterday.  Three years ago, I wasn’t even driving.  I’ll take this win.  

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Dear Winter

Dear Winter,

When it was hot in the summer and I was sweating profusely, I pined for you.  I couldn’t wait for you to render me useless beneath heating pads and heated blankets.  I longed for luxurious soaks in Epsom salts baths.  My only desire was to alleviate my pain without sweating like cold drink on a hot day.  No more sweaty under boobs, cracks or crevices of any kind.  No more painful blasts of air-conditioning.

Well, I guess I’m just not ready to commit.  It has become quite clear, that I don’t know what I want or need.  This past Saturday was the first day of Fall.  You know Fall right?  Lower temperatures, kills off all things green?  Sometimes, it rains.  Sometimes, it snows.  Sometimes, it just blows.  

It started yesterday afternoon.  I had been feeling my normal, ho-hum self all day.  Then came the Brick Wall of Fall.  I felt like my battery had suddenly been drained.  And the pain!  Everything hurt.  Face, neck, head, arms, shoulders, hands, elbows, ribs, gut, hips, knees, thighs, and feet.  Pain, pain, everywhere and not a thing to help.  I have one heating pad, since the fire fiasco.  I was already too exhausted to take a bath.  I listened to my “Bedtime Beats: The Secret to Sleep” CD and was able to relax enough to go to bed.

The remainder of my night went like this.  Wake up from dead sleep to use the facilities.  Go back to sleep.  Wake up from dead sleep, in absolute terror, because it sounds like my son is crying and my hubby is yelling like they are being attacked.  Resist the urge to kill hubby, when I realize he is watching “The Walking Dead” and that accounts for the sounds that woke me up from a sound sleep.  Wake up to daughter crying.  Wake up to daughter coughing and Daddy trying to help but Daddy has work, so here I go again.  Sit up with daughter until she falls asleep.  Surf Facebook, because now I’m wide awake and the more my daughter snores and sleeps blissfully, the madder I get that I can’t sleep.  Sleep the rest of the night, eventually.

I feel I’ve digressed, slightly, from my topic.  Hold on a second.  I need to go to the top of this letter and remember why I was writing you a letter in the first place.  Oh, yes.  I remember now.  I was trying to let you down easy.  Since I hurt too bad to sugar coat it anymore, I’ll just put it this way.  Winter, you suck.  I’m not ready to hurt every minute of every day.  I’m not ready to be so tired I can barely walk, let alone do the five hundred other things being a Mom requires.  Also, I was just thinking that maybe I should try selling some of the stuff I sew.  Thanks for taking that dream away from me as well.  I can barely get my kids to and from school and their sport’s practices like this.  My poor Hubby is so grouchy from his work situation, that I am the only one getting anything done around here.

Not to be harsh, but nobody likes you.  Maybe, when it snows and the ground is covered in white and glistens in the sun, but that is the only time.  And, maybe, when you leave the trees all frosted in the morning.  Other than those two instances, you could go away and I wouldn’t miss you at all.  I guess what I’m really trying to say is, I would rather be sweaty, in pain and fatigued from doing more than normal, than to be in pain, fatigued and pretty useless for no good reason at all.

Sincerely,

Fibronaut at Home

PS.  I just realized, this morning, that we would soon have a Daylight Savings Time event.  Bite me, Fall!

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Another “I Can’t Sleep So I Might As Well Post” Post

I haven’t posted in a month. Mostly because my daughter has demanded use of her Kindle Fire.  I don’t know if I mentioned it before, but I dropped our laptop, breaking the screen.  So I only get to post and do other internet stuff when she allows it.  Yes.  She does take unnecessary glee in demanding her device just when I’m thinking I might have a post in mind.  Also, I just haven’t felt like myself lately, and my creativity has taken a backseat to vacations and the blahs.  Enough with the excuses though.  I can’t sleep and it is the middle of the night, so I have no excuse now.  There is something rattling around in my head. 

My niece is visiting and while she’s not staying with us, I watch her during the day.  She is six years old and like my nine and eleven year old, can do most everything herself.  Having three girls in the house is three times the drama.  Do every combination of alliances that a four year old, six year old and nine year old could form, including the equation of all three girls ganging up on my eleven year old son and you will see my dilemma.  DRAMA!!!  Plus, I don’t get as much rest as I need and if I need to take a nap, I can’t.

We went to Chuck E. Cheese for lunch two days ago.  My husband met us there and we left when his lunch hour was over.  Unfortunately, my niece and I seem to have picked up a stomach virus while there.  Consequently, my tummy feels like someone has been punching me, from the inside.  Big f-ing deal, right?  Yes.  It is a big fibromyalgia deal.  (WARNING: Non-sexy TIM follows)  Yesterday morning, when my stomach pains and diarrhea from the night before were still present, I was concerned that the 500 mgs of Naproxen that I take each morning, along with all the other medications, were becoming too much for my stomach to handle.  So I did something colossaly stupid.  I only took one 250 mg pill of Naproxen.  This resulted in me having even more pain, all over my body.  I answered the question of whether the Naproxen is working or not, but I paid the price for that knowledge.  Once I found out that my niece was sick also, I wished I had taken the full dose of Naproxen.  Especially when the storms began to roll in that afternoon.  Not only was I contending with added pain from the lower dosage of Naproxen, but I also had the added fun of pain from barometric fluctuation.  Sounds like fun, right?  I also ended up on puke bucket duty with my niece while someone else took my kids swimming.  I had to drive my kids to the pool, clean up after my sick niece and try to take care of myself.

Because I couldn’t tell if my tummy was hurting because I was still sick, or because my tummy muscles were sore from all the action they were getting, or because I was starving, I kept trying to force toast.  Then my tummy would hurt worse, my symptoms would worsen and it was like I was starting all over with this illness.  I made myself eat soup and applesauce for dinner so that I could take my 250 mg Naproxen with dinner.  I again couldn’t tell if I then had hunger pain or food in my tummy pain.  I felt like I had a return of my appetite, so I ate a little chicken and mashed potatoes.  What a huge mistake.  Return of the big D, stomach cramps and pain.  I know I need to give my tummy a rest, but I also need to take my medicine.  Pre-fibromyalgia, I would just hold off on the meds that upset my stomach and keep pushing fluids.  I had my hubby get me ginger ale, but that didn’t help either.  I took a bath early yesterday, before I knew I was sick, but that just wore me out, over-heated me and did not help my sore muscles in the long run.

I feel like I might be able to sleep now.  Sweet dreams.

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A Poem For Fibromyalgia

I just found out that April is National Poetry Month.  I wrote a poem about Fibromyalgia to celebrate.

A Lament of Fibromyalgia and Chronic Fatigue Syndrome

“Show me where it hurts,” you say?
Well, tell me, have you got all day?
Head, shoulders, knees and toes,
The pain it stays, it never goes.
Hips, back, fingers and gut,
Fibro is an actual pain in the butt.

Insomnia keeps me up at night,
Then all day long, it’s sleep I fight.
Fibro-fog’s the funnest part,
I forget what I’m doing before I start.
With all of the pills I take every day,
Why won’t the pain and fatigue go away?

Is this fibro-diagnosis junk?
Am I just in some sort of funk?
Is all the pain inside my head?
Maybe I should try this or that instead?
Until you’ve held spoons in your hand,
Then you cannot begin to understand.

Invisible, my illness may be,
But watch me closely and you will see.
I cringe when I move, stand or walk.
My face hurts whenever I eat or I talk.
I conserve energy however I can.
My good moments are a flash in the pan.

Yoga, acupuncture, grounding, meditation.
Name it, I’ve tried every new health sensation.
Lyrica, Cymbalta, oxycontin, oxycodone,
Flexerall, Fentanyl and hydrocodone,
All these and more I’ve tried.
They made me wish that I had died.

Write in a journal, and go way back,
Try to figure out why you’re out of whack.
Join a support group, listen to others whine,
Then you’ll realize you’re doing fine.
Take it easy, take it slow,
Breathe deeply, calmly, go with the flow.

Gluten-free is the way to be?
I don’t have the time or the money.
I want to be healthy and eat right,
But our budget is already way too tight.
Sugar and caffeine are bad they say.
When I’m dead, you can take those away.

My Cognitive Behavioral Therapist
Told me what others think of me is none of my business.
But when you can’t work and have to prove you’re sick,
What others see is what makes you tick.
Especially when you feel okay,
You struggle with guilt for feeling that way.

Different doctors say different things,
Depends on which drug company is pulling their strings.
Once I say Fibro or Chronic Fatigue,
They act like my health is out of their league.
I just want to be treated like a human being,
Not like the head case they keep on seeing.

My house, car and life is a mess.
I’ve got too much anxiety and too much stress.
Whenever I manage to take a shower,
Rest and recovery takes an hour.
My definition of dirty and clean
Do not mean what you think they mean.

Every activity is well thought out,
Even then, there is always doubt.
What if I start to hurt half way through?
How long do I rest before I can continue?
What if I need more than a short nap?
What if I still feel like crap?

There is a storm coming in day after tomorrow,
The pain starts today and the fatigue will follow.
No matter the temperature, no matter how nice,
I do way too much and pay for it twice.
I need to move to a climate with nary a storm,
Where the sun is always shining and it’s always warm.

I could go on and on about all this crap,
But I’m starting to yawn and it’s time for my nap.

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Insomnia Purge

It’s 2 o’clock in the morning and I can’t sleep.  Here is a list of why:

  1. I over did it today popping tags at Goodwill and a couple other thrift stores.  There was resting in between but it’s difficult to rest while riding in the car.
  2. The hamster in my brain won’t get off his wheel.  Currently, the loop consists of the ridiculous amount of sewing projects in my brain, all the cool gardening ideas I saw on Pinterest earlier, the letter we got from my kid’s school warning us of the amount of tardies my kids have had and how three tardies equal one absence and they are required to attend a certain number of hours, all our medical bills, and whether Social Security is going to approve me for disability or not.  I really need to get a new hamster in my brain because this one is keeps bringing up things that I’ll never have the energy for or that I can’t change.  I would love to sew or garden all day but I don’t have the energy and those activities cause too much pain.  I can’t drive in the morning so other than nagging my hubby to get up earlier, which I don’t have the energy for in he morning anyway, I just have to let my hubby  that.  I can’t do anything about the medical bills and Social Security so why am I wasting my time worrying about them?
  3. When I tried to go to sleep at one o’clock, the second time I’d laid down, the hubby wouldn’t leave me alone, which made me really angry, contributing to my inability to sleep.  I try to give him what he needs, even when I’d much rather be sleeping.  Maybe my next advertisement I do on the blog will be for a Sister Wife
  4. My three-year-old can’t sleep either because the lucky girl took two naps today.

There could be more but I’m typing on my daughter’s Kindle Fire and it keeps deleting random words and letters.  I’m about ready to throw this thing.

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Never again

It’s three o’clock in the morning and I’m still awake.  Exhausted and tired of listening to everyone else sleep.  I will never take nuvigil again.  I haven’t had insomnia this bad in months.  Time for meditation and hopefully that will let me sleep.

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Denver Broncos Wishes and Justin Bieber Dreams

It is 3:57 am.  I’ve just filled the humidifier because I have one of those dry coughs that isn’t really a cough.  I have had two of the most awesome dreams ever.  Two dreams in one night?  And not those crappy dreams that freak you out, making you think you might actually be a lesbian or you just went somewhere naked, but two freaking awesome, totally fabulous, seemed real at the time dreams.  Following is a brief (?) synopsis of both dreams.  My inner-freak-out-dialogue is in parentheses.  

Dream synopsis #1:

The National Football League has decided to hold special games at local high schools.  The Denver Broncos are playing somebody at Aurora Public Schools Stadium at William C. Hinkley High School.  (Shut the front door.  That is my high school.  Where I went for four years.)  Yours truly is on a step team/cheer leading squad made up of former alumni.  We are in the sweetest Bronco gear ever and we are so bad-ass that no one is watching the game.  We even do a step routine that takes us around the whole track.  Even the NFL players stop to watch.  The Broncos lose (WTF?) but no one cares because we are the most coordinated, hyped-up, epic step team/cheer leading squad ever.  At the end of the game, the Broncos even huddled around the coach at the end of the field for their team meeting, just like football games in high school.  Only our families are left in the stands because they know we’ve saved the best for last.  We do our encore and the Broncos stop to watch us.  (Isn’t reminiscing with my sub-conscious fun?)

Dream synopsis #2:

I go into a very busy and weirdly set up salon for a haircut.  It is set up, kind of like I would imagine a hair stylist classroom.  Imagine lots of stations set up in rows, just like desks in a classroom.  My hairstylist is non other than the very famous hairstylist Justin Bieber.  (BAHAHAHA!  Where does my sub-conscious come up with this?)  I tell Mr. Bieber that I need something different and he starts messing with my hair, preparing to cut.  The whole time, he is talking to himself, psyching himself up.  “Come on.  You can do it.  It’s just hair.  Why does it have to be a cut?”  Then I feel bad for him and I tell him, “Don’t worry.  It’s easy.  I’ve cut my own hair before.  I checked out a book from the library.”  (That last part is true.  How To Cut Your Own Hair (or Anybody Else’s)” by Catherine Heckman, Cathie Obiedo and Claudia Allin)  So The Biebs is getting more nervous and just decides to take a whack at it.  He cuts a huge, diagonal chunk from my temple to my nose.  He immediately starts freaking out and I start trying to calm him down.  He calls someone over to look at my hair.  Now there are several people staring at the massacre.  The waitress (Where did she come from?) asks if I need a drink.  She mentions a couple different drinks and roller skates off to fill my order.  Another waitress skates up and brings a hamburger and fries.  My tummy is growling, but the food is for The Biebs.  Justin Bieber is a stress-eater.  He starts wolfing down the food while someone else is messing with my hair, trying to figure out how to fix the mess.

After this I woke up either because I was hungry, coughing or just realized that there is no way Justin Bieber would be doing my hair.  There is also no way that The Biebs would survive eating a burger and fries in front of me when I’m hungry.

Unfortunately, I was so enthralled with my dreams, that I couldn’t sleep until I shared them.  Which means that although I slept well enough to have a couple kick ass dreams, I’ll probably still be a zombie today since I’m up typing this at four in the morning.  Go Broncos!!!

 

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Re-learn Something Every Day

I should know by now that trying to go to bed when I’m not feeling sleepy and I’m having noticeable pain is not a good idea.  It is like I forget all the years I’ve tossed and turned for hours before falling asleep and I decide that maybe if i just lay down, I’ll get lucky.  I should know that will probably never happen.  It is 12:20 am and my muscles are aching and feel worn out.  I can already feel the weather we’re supposed to get on Thursday.  I really hope the weather doesn’t start another Fibro flare.  I am just getting my house back in order after the last one and I have way too much to get done before the kids are home on Christmas break.

I feel like I just did laundry and already it needs to be done again.  Is it just me or does dirty laundry replicate itself in the laundry hamper?  Same question, only with dirty dishes?  I already know that all my children have to do is drop one piece of cereal on the floor and the instant the cereal hits it multiplies itself by five.  Also, my children can fill a glass full of water and not spill a drop but give them anything sugary-sticky and suddenly they have two left feet and no oppose-able thumbs.

Now that these late-night ramblings are off my chest I’m starting to feel sleepy.  Oh, wait.  I jinxed it.  I shouldn’t have acknowledged that I might be getting sleepy.  I give up.  Good night all.

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It’s 2 o’clock in the morning…

…or TMI and Vampires continued.

I’m reading a very steamy anthology titled “12 Shades of Surrender”.  My hubby is very happy about this.  Let me explain how this works.  I read something naughty and he actually gets to enjoy the reason he “bought the cow” in the first place.  The mood struck, I couldn’t get my muscles or my mind to shut off, so I went for it.

I only have myself to blame this time for my sex-induced insomnia.  Thankfully, I’m now embracing my fibro-vampirism (Dictionary.com says that vampirism is a word.  Google Chrome’s spell-check can suck it!).  I let the three-year-old stay up late tonight so she should sleep in which will allow me to sleep in.  Theoretically.  I may have just jinxed this theory by writing about it.  My older two are don’t have school tomorrow, so they will be at my beck-and-call tomorrow.  Double jinx!  Dammit!

If you have fibro and you aren’t taking advantage of your insomnia to blog or launch a stealth-sex-attack on your partner, what is the point?  If you are going to be awake in the middle of the night anyway, why not do something productive?  As long as you stay away from sharp objects and heavy machinery, you are good!

Fibro-vampires unite!

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