Fibronaut At Home

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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Do Something You Love Today

Yes, we hurt.  Yes, we are tired.  We want awareness for all invisible illnesses now.  We want to be able to earn a living, spend time with our loved ones and do everything we used to enjoy before pain and fatigue took over our lives.   Today, just for a little while, let’s pretend.  Let’s pretend we don’t hurt.  Let’s pretend we aren’t tired.  Instead of bemoaning our current existence, let’s imagine that everything is fan-freaking-tastic.  Ignore the housework, ignore the bills, ignore the screaming/whining/fighting kids*, ignore anything that would normally have you pulling your hair out.  *Check in with the kids from time to time, just to be sure they are all still alive and accounted for.  Today, we are all going to take a little me-time.

I am listening to classical music, reading a book and still in my pajamas.  I’m contemplating getting up and getting in the shower, but after that, I have no plans to do any housework.  The dishwasher needs to be loaded and there are three loads of laundry to fold.  The toilet is disgusting and the bath tub has a very unattractive ring.  Today is the first day in over a week that I can see the garden and it is supposed to be over 50°F.  All of the things I “need” to do will be here tomorrow.

What I really need is a day to me.  I need a day without any guilt over what I have or haven’t done, said, thought or felt.  I am clearing my mind of all that, focusing on the music playing and the story I’m reading (Thrown By A Curve by Jaci Burton) and letting everything else go.  After I get the kids home from school, I’m going to work on an apron I’m sewing and that is it.  When my hubby gets home from work, I will NOT immediately assume that he sees the house exactly as he left it this morning and thinks I’m a lazy ass and wonders what I did all day.  I’m going to greet him with a kiss and a smile.  We’ve been married 13 years.  He knows me and he still loves me.  If he didn’t, he wouldn’t still be here.  And who knows?  With all the resting and ignoring of life’s problems I’m doing today, the bedroom door might end up locked while we’re taking a “nap” (wink, wink).  I might as well add doing-the-one-I-love to the doing-something-I-love list.

Shower, listen to music, read, sew, love.  How will you take your me-time?

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Another Spring Snow Storm

I knew we were going to get snow today when I could barely move yesterday.  I hurt everywhere, and I didn’t really wake up until 8 o’clock in the evening.  I drank two cups of coffee in the morning and took a three hour nap in the afternoon.  I read, meditated and wrote in my journal.  I finally managed to wash my face and brush my teeth around 3 o’clock in the afternoon.  I showered around 7:30 pm.  My family had a Birthday dinner at Red Lobster, followed by a shopping trip.  I missed out on both.  I spent my evening watching Pitch Perfect with my cat.  I ate instant oatmeal for dinner because that was the easiest thing to make.  Missing out on family activities makes me sad.  Although the movie made me laugh a little, I was feeling depressed anyway.  I tried painting my nails to cheer myself up but that didn’t work.  I went to bed around 11 pm but my three year old took a late nap so she had me up several times in the middle of the night.

Despite my inactivity the previous day, I knew I needed to put that day behind me.  Unfortunately, I often forget that just because yesterday was a bust doesn’t mean I need to catch up on everything I didn’t do yesterday, today.  When the snow started around 11 am, I started on dishes.  I had to empty the dishwasher first, then scrape left-over’s into the trash and warm the pan with bacon grease in it.  Mid-pour of hot bacon grease into the used oil jar, I realized that bacon grease was running along the bottom of the pan, down into the crack between the stove and the cupboards and onto the floor.    I cleaned up that mess and loaded the dishwasher.  I washed my face and brushed my teeth and then swept the kitchen floor.  Anyone with kids knows that there is more to sweeping the floor than just sweeping.  First, you have to pick up any toys, towels, napkins (I made cloth napkins to save money on paper towels), shoes, clothes, pencils, hair ties and any other crap my kids have dropped by the front door, back door and under the kitchen table.  Then, if you aren’t dead tired with muscles cramping, you can actually get to the sweeping. I am going to leave the mopping to either my MINT automatic floor cleaner or my nine year old daughter.

Now I’m blogging because I need a break and with the help of the Kindle Fire’s auto-complete and the book chair I found at Goodwill, I can post with less pain.  Less pain, not pain-free.  I still get pain in my neck, shoulders, wrists and fingers.  I am really stressed out because I am in the process of applying for Social Security and they want me to go to one of their doctors.  The appointment is on my Birthday, May 4th, at nine o’clock in the morning.  I have around two weeks to obsess and stress over it.  I don’t want to do that but I don’t know how not to.  I really wish I could talk to my therapist about it but with money tight I don’t want to spend the money.  So I’m talking to you all.  Thanks for listening.

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Snow, Fo’ Sho’.

 

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We awoke to find a couple inches of snow. With my weather-prediction body, I should have been a meteorologist. It is supposed to continue snowing through Wednesday.

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In technology news, yesterday, I dropped my laptop. The screen is fubar and I’m imposing a technology ban on myself. I will no longer be allowed to use any kind of mobile device while I’m mobile. Walking and doing anything else is obviously not for me. We are currently using my daughter’s Kindle Fire. The really sad part is that this is not the first time I’ve destroyed a laptop. August 2011, I spilled an entire glass of Orange juice in the previous laptop. What bothers me the most is that I was trying to connect the printer/scanner to the laptop when I dropped the laptop. That’s one way to solve the problem, I guess.

In other fubar news, we’re staying with family because, last night, while draining the bath tub, the water went into the kids’ room. We just replaced carpet pad and dried out the carpet. I’m pretty sure I shared how I tried to clean the washing machine filter and didn’t get the cap back on all the way. This time is so much worse because the water doesn’t smell like the girls’ bath water or washing machine water. It smells like the sewer lift station. We are so fortunate that we have family nearby who are willing to let us stay with them. I could really use some good news. I have a doctor’s appointment tomorrow. I have to pay for him to fill out my Social Security disability paperwork. My hubby is driving me, but, my doctor is in Boulder and they are expecting more snow than us.

April has been a tough month.  I’m ready for May.  I’ll turn 34 and hopefully we’ll have our house figured out and the rest figured out.

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The Dangers of a Clean Kitchen

Yesterday was a snow day for the kiddos.  I was happy to have them home and to myself.  Really.  I swear.  Okay, you got me.  In the morning, my hubby had a doctor’s appointment to go to and had there been no snow day, I would have had to drive the kids to school.  I haven’t driven them to school in over a year.  I’ve been Fibronaut at Home since March 30, 2011 and have only driven them to school once since then.  Really, I was just happy that I could have slept in, had I not been so happy at not having to get up, which led me to not being able to go back to sleep.

Back to the snow day and me and my kids, stuck in our 1100 square foot house.  No escape, for them or for me.  Everything was fine.  We were watching Ghost Adventures, Season 4 and for a brief time, all was sunshine and rainbows.  If you have three kids, three televisions, a Wii, an XBOX, a DVD player, a VCR, a laptop, a Kindle Fire HD, a tablet, a 3DS, two DS Lites, 5 gazillion kids’ books and movies, what are the odds that instead of finding something to do on their own, they will immediately glob onto whatever the other one has, whining incessantly, fighting,  and screaming, until I am ready to run from the house in pajamas in the 15 degree weather?  Instead of exposing my sensitive parts to the weather, I decided to get some stuff done.  I loaded the dishwasher and rested.  Then, I started cutting material for skirts for the girls and I rested.  In between each task, I had to kick children out of my spot on the couch.  I took a shower and rested.  In between the straightening of the kitchen and the shower, I realized that we had a lot of brown bananas.  Here is where the insanity begins.

I know better than to bake.  I really do.  But sometimes, the thought of yummy, delicious muffins and the anomaly of a “clean” kitchen is too much to resist.  I had a “clean” kitchen.  The majority of the dishes were clean, I had on socks so I couldn’t feel the icky-ness of the floor and the counters were semi-organized.  I should have just gone for a walk in the snow and below-zero wind chill temperatures instead.  Baking should be easy.  I have a mixer.  All I have to do is measure stuff, put it together and put it in a pan and I’m done.  But this recipe didn’t call for a mixer so my brain didn’t make the connection and I hand stirred everything.  The recipe included brown sugar.  Mine is in a rock-like lump inside the bag.  I had to chisel chunks off and then use the mortal and pestle just to get it in usable form.  That was the first thing I did and with the way my arms, back and neck felt, should have been a huge red flag to me that maybe I should stop.  This is what is hard to explain about fibromyalgia pain and what most healthy people do not understand.  It is not that every movement is painful at the time and what you are doing does not have to be particularly difficult.  What matters is that every movement is paid for, whether you pay when you’re doing it, or later that day, or the next day.  Sometimes, like with my baking, you pay for it during all three.

Imagehttp://allrecipes.com/Recipe/Banana-Crumb-Muffins/

The muffins are delicious and the children still breathe, but my arms and shoulders are petitioning the rest of my body to secede and my hands get these wonderfully sharp spasms going through them every once in a while.  Here I sit at my keyboard, typing away, like I’m not going to pay for this post the rest of the day and possibly into tomorrow.  The laundry needs starting (not happening), the kitchen is once again a mess (muffin mess plus dinner mess), and the kitchen and living room floor is even worse than it was (kids were home yesterday migrating as they ate their muffins).  I think I’ll just chill out and watch the snow melt before I have to pick up kids from school.  Maybe I’ll get lucky, the kids will get in a fight and I can make them do dishes as punishment.

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Who’s Foolin’ Who?

Happy April Fool’s Day.  How have I made a fool of myself?  Let me count the ways.

My nieces came to visit and I painted all their nails.  I can barely paint my own nails, so why did I think I could do seven little girls nails and not suffer the consequences?  After the third little girl’s base coat, my two eldest nieces noticed my hands shaking.  By the time I was done, my shoulder’s ached, my neck was spasming and my hands had sharp pains running through them.  That continued through the next day and it wasn’t until the following day that I could finally paint my own.

I let my kids get bunnies actually thinking that they would be the ones taking care of them.  So far, only my nine-year-old daughter has been helping to feed and water them.  I don’t even want to think about cleaning up their poop.  I’ll be lucky if the kids make it through one cage cleaning.

Abigail, Honey Bunny and Thumper

Abigail, Honey Bunny and Thumper

Since my hubby was not behind the bunny idea, I knew that he’d really let me hear it if I asked him to build a roof for the bunny cage.  I decided to do it myself.  I took measurements, made a “plan” and had three little helpers.  How hard could it be?  Problem #1:  I haven’t built anything since shop class in middle school and all I remember making is a metal hook and a leather key-chain.  Problem #2:  I have never used a circular saw in my life, so I went with the hand saw.  Problem #3:  I have Fibromyalgia and Chronic Fatigue Syndrome.  I took breaks and I had the children for the heavy lifting but they couldn’t use the saw so that portion of the program was all me.  Let’s just say that the size, shape and “plan” for a lean-to became four pieces of wood, staple-gunned together to make a kind-of roof.  That was three days ago.  That evening every muscle in my body was screaming and I was so exhausted that I felt nauseous   The next day, I had muscle spasms on my muscle spasms, could barely walk or sit.  I sat, just not comfortably.  Yesterday, I started the trip to my Mom’s with a migraine, I rested all the way there and took a nap once we arrived and it hurt to lift my fork at Easter dinner.

With all the bunny drama, you’d think I’ve been taking it easy.  There is a little problem with that. I had cut some fabric earlier in the week to make myself a shirt to wear on Easter.  I had yet to sew my shirt when our family grew by three bunnies, so instead of taking it easy on Easter Eve, I was sewing.  I was basically sewing two rectangles together with a waistband but even the small movements required for pinning and using the sewing machine made my arms and legs hurt.  My Dad told me I should sell clothes I make on the internet.  The things that I sew take 10 times the effort and time that they take a healthy person and the only reason it is worth it to sew these things is the happiness in brings me and my kids.

Not yet sure if it was worth all the pain it caused to create.

Not yet sure if it was worth all the pain it caused to create.

I won tickets from a radio station to Disney on Ice.  I needed to go to Denver to pick up the tickets on a weekday.  I actually tried to make plans to drive to my Mom’s house, an hour and a half away, on my own.  The last time I tried to drive longer than 20-30 minutes, I was in pain and fatigued for four days afterward.  After thinking about it, I cancelled those plans and made new ones that didn’t involve me doing any driving.

Yesterday, I had a joy-thief, one of those people who isn’t happy unless they are making everyone else miserable, say some nasty things about my wonderful hubby.  She had me so mad that I actually rinsed everyone’s plates at Easter dinner and helped load the dishwasher.  I know she’s a joy-thief and I still let her get to me.  I hope she reads this so she knows I’m on to her and her bull that she tries to pull every holiday.

As if me fooling myself isn’t bad enough, my three-year-old just locked me outside.  I had to ring the doorbell a bunch and yell at the top of my lungs to get her to let me in.  She tried it again when we picked up her older siblings from school.  Luckily, they leave the keys in the door so I was able to let myself back in.

As usual, I’m sure I could think of about a hundred other examples of ways in which I’ve fooled myself but I have trouble remembering anything that happened beyond last week.  No joke here.  All of these ridiculous shenanigans happened in the last week.  April Fool’s Day must be my favorite holiday.  I celebrate all year long.

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