Fibronaut At Home

Energy, Pacing Yourself and a Happy Ending

Before Fibromyalgia hit me last March, I was a whirlwind of activity.  I didn’t know the meaning of the word pace and if I asked someone for help, it usually involved opening jars and killing spiders.  If I was busy at work, I was on the balls of my feet, speed-walking through the bank, sometimes standing up to complete tasks because sitting would only slow me down.  At home there was always something to clean, pick-up or put away.  I’d save all the hard cleaning for the weekend and spend the majority of one of those days dancing my way through laundry, dishes, floors, bathroom and toys.  In the spring and summer, I liked to walk the three blocks to work, sometimes walking home for lunch as well.  We would go to the Denver Zoo and walk through the entire zoo in one trip.  I regularly walked with my kids to collect the mail, to play at the park where I would be the monster and chase them around the playground equipment, and to the library.  Energy was limitless, re-filled with a power-nap, boosted by a cup of coffee.

Since I was diagnosed in November of 2011, I have had to learn so many new things.  The most important thing I have to focus on, in everything I do, is that I only have half the energy I think I have, and if I use too much, then I will be paying it back.  Before I do something, I have to decide whether I have enough energy to complete the task.  I have to separate everything on my list of things to do into Have, Need and Want.  The Have category is made up of things that I have to do daily, that I cannot hand off to someone else.  Eating.  Taking care of my kids.  Taking a shower and getting myself dressed.   Exercising.  The Need category is made up of things that I need to do, but can ask for help if need be.   Wash dishes.  Wash clothes.  Take care of my cats.  Picking the kids up from school and helping the kids with homework.  The Want category is pretty obvious.  Crafts.  Shopping.  Video games.  Movies.  Reading.  Here is where it gets tricky.  I’m supposed to do what I want last, but I’m still supposed to take “Me Time” every day as well.  What is “Me Time”, you may ask.  I’m a married, mother of three so this is a work-in-progress.  The only “Me Time” I get is when the kids and hubby aren’t home or when I’m in the bathroom with the door locked.

I’m still learning how to pace myself.  After I shake of the morning fog, around 10 am or so, I have a couple hours to try to get what I need, have and want to get accomplished, done.  I rest in between, trying to not get lost in Facebook, Pinterest, or any of the other online mags I go to every day.  I can always tell when I’ve over done it because the next day my arms feel like they weigh 50 pounds and I whine a lot.  I feel like I have the flu, achy and I just want to sleep.  On days like that, I do some yoga or pilates and my daughter and I eat peanut butter and jelly sandwiches because they are easy to make.  I’ve called my parents on days like this and they’ve driven  an hour-and-a-half to come take care of me.

The last time we went to the zoo, my husband pushed me in a wheelchair.  I’ve decided that I don’t ever want to do that again, no matter how much pain or agony it causes.  In a visit to the Denver Museum of Nature and Science last week, I felt physically ill by the end of the two hours we spent there.  Sure I missed some moments with my husband and kids because I was looking for a place to sit while they walked around but the moments we did have were priceless.  My daughter and I walked to the library yesterday, a little over two blocks, and I was feeling light-headed by the time we made it there, wondering if I was going to be able to make it home.  I then had to pick up the kids from school, stop by the bank and I promised my daughter some sledding that she’d been begging for, so we went to the park.  It was such a nice day and it felt so good to be out enjoying the sunshine despite the wind.  I ached from my head to my toes last night.  I was dozing off at 7:30 and in bed, dead to the world, by 8:30.  If my energy had a meter, I was on empty.  I over did it.  It was totally worth it though.  My little one had such a huge smile on her face when we left the park.  Today I’m writing my blog, though a storm is coming in so my joints hurt.  I’m cutting up magazines so I can organize them into a format that doesn’t make me crazy and throwing away the rest.  It is a beautiful day, the sun is shining and I am dozing off.  Life is beautiful despite its hardships.  I push the pain and the fatigue to the back of my mind and though I suffer later, these are the moments I want my children to remember.

Advertisements
Leave a comment »

Gettin’ Down with the Downtown!

The last two days, I’ve ignored my dirty dishes (how do I still have a pile with a dishwasher?) and my dirty kitchen floor (how do I have a dirty floor with my MINT automatic floor cleaner?), to do some real exercising via the Kinect.  Thanks to “The Black Eyed Peas Experience” and to “Dance Central” I am well on my way to shaking my tummy off.  I’ll keep the booty and the boobies but I hate the tummy!  If you are looking to try the Kinect as a way to get in shape, I highly recommend “Dance Central”.  There is a workout mode where you put in your weight and after every dance it tells you how long you’ve been exercising and the amount of calories you’ve burned.  You are able to choose your difficulty level which potentially allows you to perform to several songs.  My faves are “Push It” by Salt N Pepa and “C’mon Ride It” by Quad City DJ’s.  While I’ve only played it twice and I’ve not fully explored the game, “The Black Eyed Peas” is intense.  In story mode, you learn three to four different dances in four sets and perform in between each one.  You then perform with “The Black Eyed Peas” incorporating all the moves you’ve learned.  I do one song and I’m done.  I feel like I’ve really worked out, but I’d prefer to do more than one song.  As I said, I haven’t played “The Black Eyed Peas” as much as I’ve played “Dance Central” so there may be an easier mode that I’m missing.

We have other games including “The Michael Jackson Experience” and “Once upon a Monster” but those are more fun to play with my hubby and kids.  The most important part of  all this is that I’m up and moving.  Does that mean I’m ready to go back to work?  No.  I still have days where I feel like I can’t move due to pain or fatigue, especially when storms come in, and some days are better than others.  How can I commit to an employer when I have no idea when I can be there and when I can’t?  I’m not the same person that I was before Fibromyalgia and I’m still learning what I can and cannot handle.  Employment is something that unless I’m my own boss and working at home is unfathomable to me.  I have to start from square one and if it turns out that what I start I can’t complete that is a whole other psychological war that I’m not ready to fight yet.  So for now I’m learning how to stay healthy when I’ll never be the healthy that I was before.  One of the major complications of Fibromyalgia is that you have half the energy you had before.  And if you use more than you should, you pay.  That is a completely different post.  I feel like I say that a lot.  Maybe you never stop learning because life constantly throws you new experiences.  Fibromyalgia has thrown me so many different changes all at once that I have to focus on one at a time until I’m in control of my life again.  I’ll let you know when shaking my booty is old hat again.

Leave a comment »

Weight a minute!

I have never, in my entire life, through all the depressions I’ve eaten my weight in chocolate and through three pregnancies, have NEVER weighed what I do today.  173 pounds.  They say age ain’t nothin’ but a number.  Well weight isn’t either.  Especially when your weight gain is due to a pill you have to take.  I don’t mean want to take, I mean have to take.  Without Lyrica I shake and spasm all the time.  My hands shake, my muscles jump and sometimes, my entire body spasms.  When I think of those months where I woke up me and my husband with my spasms, I want to cry.  When I think of all the pretty and wonderful clothes that I love that I had to box up in the last year, I want to cry.  Fibromyalgia isn’t just about pain, although it hurts.  Fibromyalgia takes your life and what you knew you and yourself and your family and your marriage to be and it blows it into a billion pieces.  I have to fight for every one of those pieces of my life.  The fight for my weight and my body to look the way I want it to look has recently reared its ugly head.

People see a fat person and they see “lazy”.  They see “doesn’t work out”, “never met a doughnut she doesn’t like”, and my most recent and most embarrassing “when are you due?”  I didn’t correct the hair dresser because I didn’t want to make her feel bad when I myself have told my husband that I look pregnant.  I also had a family member tell me that someone saw me in the grocery store and asked them when I was due.  I read somewhere (can’t remember where, but that’s another post) that the majority of Fibromyalgics (yes, Google Chrome, that is a word!) carry their extra weight in their tummy’s.   Please, for all that is holy, stop asking people you think are preggo, when they are due!  If they wanted you to know, they’d tell you!

I will never judge someone based on their weight again.  I will never comment on ill-fitting clothes again.  I’ve spent an embarrassment of money in the last year going from a size 8, to a 10, to a 12 and now to a 14.  I asked someone that I thought was bigger than me what size they wore, when she told me it was the same size I had just left, I was shocked.  The hardest part of the gain has not been the stretch marks, although they are painful to me, or the stretch on the pocket book, although that has been an added stress to an already strained relationship with my husband.  The hardest part is looking at myself in the mirror and hearing all the comments that my husband or myself have said over the years about others.  I know that he does not find overweight women attractive.  So how, when I still feel sexy and I look in the mirror and I see the curves I’ve always wanted, do I process that?  He is the most sensitive man I’ve ever met and he knows better than to say that he doesn’t like the extra weight.  Well, I don’t like the extra weight!  So I say so and then he suggests work-out solutions and then I get mad at him for that.

I was always skinny growing up and until my second pregnancy had no trouble keeping weight off.  I had a high metabolism, ate whatever I wanted and ate frequently.  I was always self-conscious however, because I never ate large portions, and three meals-a-day has never worked for me, so my smaller portions got me called anorexic.  Therefore, I hate to eat in front of people and I get sick when people comment on what I’m eating.  Now that I’m overweight, I get comments all the time, but to the opposite.  I eat the same way I did before and the same portions, only now it is the way I’m eating making me fat.  It is the Lyrica!

I’m supposed to to stay positive to fight the symptoms of Fibromyalgia, but there is nothing more depressing than completely emptying your closet, realizing that there is little hope that you will ever wear those clothes again.  I’m not wealthy, so everything I put away I love.  Bright colors, smooth fabrics, sleek dress pants, dressy shirts that are bedazzled to death, casual pants and jeans, khakis and cords, flowy and flirty skirts and dresses, comfy and form-fitting sweaters, baby tees, t-shirts, pajama pants and shirts, nightgowns, matching panties and bras.  I’ve had to replace everything.  And if that isn’t a metaphor for my life right now, I don’t know what is.

I detest leaving my blog on such a depressing note, but there is no helping it.  Yes.  I bought new clothes.  Yes.  I’m alive.  Fibromyalgia won’t kill me.  But it has already altered my life, my children and my husband in such a way that I can’t help but feel like my closet.  Empty.  My children are still at an age where they love me no matter what, but what about the others in my life.  The people and relationships that I didn’t even throw away.  They just left and gave up on me assuming that I was making up my symptoms and that I had a choice in any of this.  I’ve had to start over at a point in my life where I was satisfied with what I had.  A home.  A job.  Three kids, a mini-van and a husband that I loved more than life itself.  Before I’ve even had a chance to figure any of this out, I feel like people are giving up on me.  Please don’t give up on me.  I’m trying!

4 Comments »

To Fibro or Naut to Fibro

Why Fibronaut?  Because Fibromyalgic, much like Fibromyalgia, sounds made up.  So why not go by a name I made up myself that has meaning to me.  A Fibromyalgic is someone suffering from a painful condition whereas a Fibronaut is someone navigating an illness that is so much more than pain.  Pick up any book on Fibromyalgia and you will find a very extensive list of symptoms that includes not just pain, but fatigue, depression, difficulty concentrating,  and irritable bowel syndrome, just to name a few.  Doctors are still trying to understand the condition and how people go from normal healthy lives to having half the energy they used to have and ten times the pain experience of most people.

So how do I understand, live with and explain this disease/condition/syndrome (everyone seems to consider it to be something different) to the people I love?  How do I explain to my children that Mommy loves them and would love to do all the things I used to do, but I just can’t?  Even my husband Cameron (if you know him, you know he’s the most laid back, understanding, supportive and fun-loving person on the planet) sometimes forgets that on my good days I’m still not that great.  This is why I’m not a sufferer, although I do suffer.  I’m doing the best I can with what I have and trying to help others in the process.

Before I quit working, I had a customer sit down at my desk one day with a newspaper.  He was well known for poking fun and putting people on the spot and that day was no different.  He showed me the front page featuring a female astronaut and asked if that was me.  I replied “I may be a space cadet, but I’m no astronaut”.  I was pretty proud of myself for coming up with that on the fly and I definitely earned his respect with my witty response.  This is an exchange that has stuck with me and has really been something I can identify with.  Just because I’m not doing what I used to be doing and at the level I performed, doesn’t mean I’m useless.

If you’re reading this and you know someone with Fibromyalgia, I encourage you (if you have the time and inclination) to reach out to them.  If they are anything like me, they will refuse help do to stubborn pride, but force your help on them and they will be happy for it eventually.  I had some really awesome, generous friends, alumni of East Middle School and Hinkley High School in Aurora, CO chip in and buy me a MINT automatic floor cleaner.  My parents help me with dishes and laundry and my entire family has learned that I am not who I used to be physically (I’ll visit the emotional side in another post) and that sometimes I need help.

Thank you for reading.  I sincerely hope that people will follow my posts and that my doing this blog will help not only me, but others in similar situations.

 

Leave a comment »

Fibronaut At Home

Lost in space.  Weak as a newborn baby.  Hurts like the dickens.  So lonesome I could cry. And that’s all I have to say about Fibromyalgia right now.

Leave a comment »

ultimatemindsettoday

A great WordPress.com site

The Better Man Project ™

a journey into the depths

theGoodVader

Growth, together

The Elephant in the Room

Writing about my experiences with: depression, anxiety, OCD and Aspergers

mystical lunarose

Chronic pain, Rhumatoid Arthritis, Alapecia Areata,Rants, and Raves

My Journey 2 Scratch

"The secrets to life are hidden behind the word cliché" - Shay Butler

just a dad with disney questions

reading into things way too much...

hessianwithteeth

This site is all about ideas

Im ashamed to die until i have won some victory for humanity.(Horace Mann)

Domenic Garisto/havau22.com / IF YOU CAN'T BE THE POET, BE THE POEM (David Carradine) LIFE IS NOT A REHERSAL,SO LIVE IT.

Envision Your Future Online

Helping you Improve your Online Business

ultimatemindsettoday

A great WordPress.com site

Salty*mom

Tutorials and Ideas for the love of DIY

Rentbillow's Blog

"RentBillow" spelled backwards is "WolliBtner" which means "awesome" in a language I just made up.

takingthemaskoff

Addiction, Mental Health, Stigma, Spirituality

Dr. Patty's Chronic-Intractable Pain and You Sites, Inc.

Always A Safe and Nonjudgmental Place To Talk About Your Chronic Pain

Take-Two Style

A new style…all preloved, recycled and 'economical'

Let's Face the Music

Renovating an old house by a musical couple who want to live there the rest of their lives.