Fibronaut At Home

Soundtrack to Healing

One of my most favorite songs to listen to right now is This Time I Won’t Forget by Kongos.

This Time I Won’t Forget

Written by Johnny Kongos 

Oh, I will try
But I tell you it ain’t easy using only words 
And so I’ll begin
But I’ll start at the end, the day I said so long my friend

I still remember well
His smile that would not die
And the tears begin to swell
Tears I dare not fight
 

Cause now I’m alive
I’m taking my first breath
Oh I’m alive
And this time I won’t forget
 

Now as I look back
Wish I’d known that someday soon he’d long be gone
So, I will try
To remember the end, the day I said so long my friend

They go by many names
Mother, father, brother, son
And the tears begin to swell
Tears I dare not fight
 

Cause now I’m alive
I’m taking my first breath
Oh I’m alive
And this time I won’t forget

Oh I’m alive
And this time I won’t forget

 

I love the chorus.  For me, I focus on the “I’m taking my first breath.  Oh, I’m alive.”  It’s a great reminder to stay in the moment and appreciate and live the life you have.  Moving on, changing, always adapting, living.  I’m alive!

I think it’s important to have go to songs that lift you up, remind you of what is important and put you in the mood to live life.  From the time I wake up in the morning to the time I go to sleep I utilize music to get me going, get me motivated, keep me moving, and when it is time for bed, to go to sleep.  I meditate and stretch anytime the pain is getting to me.  When stretching is too intense, gentle movements of my entire body, not just the aching parts helps as well.  Listening to music while I clean helps the time fly by.  I basically listen to music all day.  Sometimes, just dancing around my house or dancing as I drive helps me stay loose.  I’ve also found that if I’m singing along to a song, I’m less likely to be grinding my teeth and tensing my shoulders.  Both of those habits are the main cause of my tension headaches.  I have a go-to CD for sleep that I’ve mentioned before:  Bedtime Beats: The Secret to Sleep.  After I take my medicine, I listen to this every night.  If I’m not at home, I don’t, obviously, but as soon as I get home.

I would love to hear what songs help you.

 

 

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Pain Level: F-Bomb

F-Bomb Level Pain is when you just want to curl up in bed, with heating pads and heated blankets and repeat the F-word over and over and over.  That is where I’m at right now.  I didn’t even do much today or yesterday.  I did WAY too much on Sunday.  I was wondering at my luck.  Not feeling so lucky anymore.  Everything is hurting or spasming and I’m exhausted.  Even my fingers are protesting my typing this post.  I need my Epsom salts for a bath, but I feel too tired for even that.  I’m going to meditate and hopefully that will help.

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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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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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One Year Blogaversary!

It’s been a crazy year.  Crazy highs.  Crazy lows.  Lots of jaw-dropping TMI and a few fat tears.  I’ve made lots of new friends, become re-acquainted with some old ones and most importantly, become re-acquainted with myself.  Besides starting my blog, I’ve also had some more memorable firsts.  Some were positive, like trying acupuncture, yoga, meditation, counseling, grounding and the hot amethyst crystal thingy my neighbor gave me.  Some were negative, like changing doctors, filing bankruptcy and becoming a disability insurance reject.  I’ve stuck with some of the positives, yoga and meditation.  The things I’ve seen as negatives have taught me more about the strength of myself and my family and really aren’t as negative as I thought they would be.

I have hobbies people!  I have a sewing machine, that I actually use!  I get all of my Mom’s material that I desire and have begun to feed a massive re-fashion habit.  I’ve always had reading but I’ve expanded my horizons this year by actually reading books that are *gasp* non-fiction.  I still read all my fun books, but it’s nice to have a little variety and be able to read my book in public without blushing.  I’ve been making a point to play some video games with my kids.  I just can’t play the fun dancing games I used to love anymore.  I love singing on Rock Band so I do that with my kiddos as much as they’ll let me.  My hubby plays Call of Duty Zombies and Halo 4 with all three of my kiddos and that keeps them happy.

I’ve made goals that I actually keep.  I hug and kiss and tell my family I love them every day.  I shower (almost) every day.  I do yoga or meditation every day.  I work on some housework every  day.  I write in my journal every day.  Some of these goals were harder than others.  Some of them I slack on from time to time.  The journal really kicks my butt some days.  I’ve learned to be more patient with me and the people around me.  Except in the morning.  I will never be patient in the morning.  The sooner the kids are out the door, the sooner I can take meds, eat breakfast and drink my coffee in peace and wait for those meds to kick in before I have to do anything, the better.

To my Mom and Mother-in-laws and anyone who ever changed my diaper as a child, you may want to stop reading here.

It wouldn’t be my blog if I didn’t drop some major TMI.  My hubby and I have been having the most wonderful sex lately.  We will have been married 13 years, this June and I just want to shout it from the mountain top that we are happily, hornily married.  The worst and I mean THE WORST part of fibromyalgia and chronic fatigue syndrome was not being in the mood and even when we did manage for all the stars to align, the kids to be out cold, and the bedroom door locked, not being satisfied at the end.  No O.  Horrible.  Being able to enjoy sex again, priceless. I’d like to thank my very understanding, patient and tireless hubby.  I’d also like to thank all the lovely ladies at the library who don’t even blink an eye when checking me out every erotic novel in the library’s stacks.  I’d also like to thank the one guy who works at the library for finally refraining from commenting on every naughty cover of every naughty book I check out.

Okay Mom etc.  You can start reading again.

I really want to thank my family and friends for all the love and support you’ve thrown my way this year.  I love you all and can’t wait to share more laughs, tears, smiles, hugs, fears and of course, TMI with you.

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Do-whack-a-do-whack-a-do

It has been 5 weeks since I’ve written anything.  Consequently, the little hamster in my head feels like he’s cornered with no chance of escape.  I’ve been fighting panic and anxiety.  My disability appeal with the long-term disability company was denied.  I haven’t been keeping my daily goal of writing in my journal or doing meditation or yoga every day but I have kept my goal of showering, washing dishes or laundry and hugging and kissing the kids and hubby and telling them “I love you.”

I have started seeing a therapist.  She is awesome.  This is my first foray into therapy so I wasn’t sure what to expect, but so far I am really liking her approach, which is holistic and I’m feeling positive that she can help me.  My parents even commented on how much better my attitude seemed and that was after only one session.  I was debating whether to write about this or not.  Then I read a blog post by Halfway Between The Gutter And The Stars and I felt like I needed to put this out there.  I realized that whether people reading this would judge me was not important.  Therapy is helping me.  I’m not a bad person because I need it.  I’m broken and I’ve been broken for a long time.  Taking this step was huge for me.

Whacks, according to my therapist, are those automatic thoughts that pop in your head where you put yourself down or others put you down.  So, here’s to whacking myself less and loving myself more.

Side Note:  If you aren’t familiar with Roger Miller, he is the best.

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Like a Chicken…

…with my head cut off.

That is my brain today.  Not my body.  My body could only manage like-molasses-running-uphill.  My brain is jumping from one idea to another and worrying over one thing after another.

As my husband would say in his best Yoda-voice “Meditate You Must.”  I capitalized all of those because every time I hear Yoda speak, I imagine him saying it like that.

I need to get back to my basic plan from my previous blog post.  My 5 daily goals and that’s it!

I start reading blogs and before I know it, I am second-guessing myself left and right.

1. Shower every day. (done)

2. Do one load of dishes (next) or laundry (done) every day.

3. Write 5 positive thoughts about your life every day. (This has been the hardest one for me to do.)

4. Meditate or do yoga or some other relaxation technique every day.

5. Hug your kids and kiss your husband every day.

Ha!  Reminder done!  Jedi-high-five everyone (Whoosh*).

 

*Whoosh is the sound made when you use The Force.

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I Love My Library!

I know the title doesn’t seem like it should have anything to do with fibromyalgia, but my library has been so instrumental on my path to wellness.  I’m not well yet, but I’m learning something new every day about fibromyalgia.  I can’t tell you how many books I’ve checked out on the subject and I just requested more.  The High Plains Library District in Weld County, Colorado is so wonderful.  Even if a book I want isn’t at the library in my town, I can request it online or have a librarian request it for me.  They make it so easy.  If there is a book I want to read and the High Plains Library District doesn’t have it, I let them know and they get it.  They also offer CDs,audio-books and e-books, which are especially nice for those with fibromyalgia because it is so much easier to hold an e-reader or listen on a laptop than to have to hold a book, hold the book open and turn the pages.  I actually gave up one of my favorite activities, reading, for a while because when I tried to read my hands would shake, I’d get painful spasms and I couldn’t concentrate on what I was reading because of this.  I now have a Kindle and I have perfected the art of book-propping to avoid hand and arm strain.

Here are some of the books I am looking forward to reading:

  • Fibromyalgia: simple relief through movement by Stacie L. Bigelow, M. A. (ISBN: 0471348023)
  • The Fibromyalgia Relief Book: 213 ideas for improving your quality of life by Miryam Ehrlich Williamson (ISBN: 0802775535
  • Figuring Out Fibromyalgia: current science and the most effective treatments by Ginerva Liptan, M.D. (ISBN:9780982833971)
  • From fatigued to fantastic!: a clinically proven program to regain vibrant health and overcome chronic fatigue and fibromyalgia by Jacob Teitelbaum, M.D. (ISBN: 9781583332894)
  • Reversing fibromyalgia: the whole-health approach to overcoming fibromyalgia through nutrition, exercise, supplements and other lifestyle factors by Joe M. Elrod (ISBN:158054326X)
  • What your doctor may not tell you about fibromyalgia: the revolutionary treatment that can reverse the disease by R. Paul St. Armand, M.D. and Claudia Craig Marek

 

I know that I’ve checked out some of these before but it never hurts to give something a second glance, just to see if you missed something or if you have an “Ah-ha!” moment.  Right now I’m reading The Fibromyalgia Handbook: a 7-step program to halt and even reverse fibromyalgia by Harris H. McIlwain, M.D. and Debra Fulghum Bruce, M.S.  Step 1 is “Start with medical treatment”.  Um.  Duh!  I’m pretty sure that upon waking with the kinds of aches, pains and fatigue that go along with fibromyalgia, the first place most of us headed was the doctor.  Included in this chapter are various methods of pain-relief like moist heat (Twice a day? How about all day?), NSAIDs, anti-depressants, muscle relaxers and every other drug that could possibly be available for fibromyalgia, as well as supplements (magnesium, malic acid, melatonin).  Magnet therapy and Human Growth Hormone, are mentioned, as well as creams, liniments, lotions, injections, TENS and everything else you could think of or have been told MIGHT help.

I haven’t read beyond this chapter for good reason.  How could a person read this and not be more confused than they were before?  Every type of possible pain relief method is mentioned and they could all work or they might not.  It’s up to the reader to figure this out?  Really?  First you have to find a doctor who is willing to try some of these things.  My pain specialist got me off of the narcotics, which I am very thankful for, but has no other suggestion for me beside yoga.  Really!  I just do yoga every day and I’m all better?  I did yoga yesterday, meditated for a while, but still had little to no energy, still had pain and still couldn’t sleep last night.  Maybe today I’ll try my Leela by Deepak Chopra on the XBOX Kinect.  Life with fibromyalgia really is all trial and error.  Unfortunately, the price for my errors often leaves not only me suffering but my family as well.  Mommy is grumpy/asleep/crying, the kids have to find their own dinner and the hubby gets no loving in any shape or form.  I think the Fibro Response and thyroid are helping with some of the sensitivity and some of the pain but I really need something to give my energy a boost.  Zoning out all morning and falling asleep after the kids get home is okay, if that’s the way it has to be, but there are so many things I could be doing if only I had the energy.  I could even consider going back to work if I didn’t wake up feeling like a Mack truck hit me every morning.  I think I need to re-read my goals/positivity post (It’s a lovely new day).

The point of this post was to say that libraries are great resources but I think I came around to say that you should try to educate yourself but do what works for you because with fibromyalgia, anything goes.  Unless it doesn’t go.  Then quit doing it because (obviously) everyone is different and even the doctor’s aren’t sure what works and what doesn’t.  And don’t get down on yourself if you have to take a nap during the day or you don’t have enough energy to do the dishes/laundry or yoga that you had planned to get done.  Do your best, even if your best is sitting on the couch and playing games on Facebook.  Tomorrow you’ll start taking names and kicking ass.  Today just may be your down day.

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Oh Happy Day!!!

Even though I had a ton of pain this morning I am now walking on clouds!!! Not just because I am listening to my dance music that I love so much or because listening to “Yoga Nidra” by James Jewell got me extra, pain-free sleep but because I weighed myself and even with clothes on I weighed 170lbs!!! Sorry for all the exclamation points but I am just so happy. Hopefully this lasts. I haven’t weighed myself in a couple weeks but my daughter told me two days ago that I looked like I was loosing weight and I realized yesterday that my tummy wasn’t quite so big so I decided to chance it and oh yeah, my face is thinner for a reason!!! I love you all!!! The changes I’ve made in the last month besides being gluten free include starting “Fibro Response”, a multivitamin that rocks and lowering my Lyrica to 300mg a day from 450mg and last but not least, I’ve been taking thyroid medication. I see Dr. Eckstein in Boulder, CO and he showed me a list of symptoms from low thyroid and I had almost every single one. Even though my blood tests showed normal, the symptoms matched. I am not a doctor and I can’t even begin to give medical advice but if you are not getting results from your current doctor, don’t give up hope! I still can’t get a thing done in the morning and tire too easily as well as experience pain, but there are ways of dealing. Don’t play the ostrich, be the lion. Tell your doctor what you expect and if they can’t be positive for you or offer you any kind of support besides a shrug of their shoulders, don’t take that! They work for us!
I’ll step off my soap-box now and say it again, I love you all!!! We can do it! If you are dragging your feet on meditation or deep breathing (yoga without the crazy western-style stretching), I beg of you to just try it. Yes, I did spend my morning on the couch, but I was concentrating on my breath not my pain.

PS: Google Chrome is trying to tell me that positivity is not a word. What’s up with that?

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