Fibronaut At Home

Go Susie! Go Susie! Go Susie! Go Susie!

SQUEEEEEE!!!!!

I did it.  I went on an interview.  Phew.  It went really well and I’m feeling really good about this.  No ifs, ands or buts.

I have a huge balloon full of squeals in my chest.  I let a really long squeal out as soon as I was in my car.  Good thing I was parked around the corner.

Probably the best part of the interview was when I was able to say that I was confident my fibromyalgia or CFS wouldn’t affect my ability to do any of the tasks associated with the job.  THAT IS HUGE!

Now, I’m off to walk the dog and I have so much happy energy, I’m going to ZUMBA when I get back.

YAY!

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Go To Outfits

One of the things that bothered me the most when I was really feeling poorly was not having the energy to care what I looked like.  Maybe it’s vain of me, but I like to feel like I look nice.  I started putting outfits together, including shoes and jewelry, in my good moments.  Then, when I was getting ready and not feeling well, I could grab those outfits and still feel pretty.  I called these my go to outfits.  They included colors that I liked, that always cheered me up.  They were items that I’d received compliments or that I knew looked good on me.  After a while, I noticed that the items that I’d purchased on the cheap at thrift stores and the items I’d sewn or upcycled gave me twice the joy and pride to wear them.  The positive energy you get when you are complimented on something you made cannot be beat.  Sometimes, just having that extra armor against others perceptions of me, made me feel better.  I’m supposed to be all, “What others think of me is none of my business”, and I realize that this kind of goes against that.  It did give me practice in not getting all offended or feeling like I had to explain when people would say, “You must be feeling better.”

Now that I’m losing weight (exercise and eating right help immensely), I get huge boosts of self esteem every time I try on something that used to fit and it is too big.  What used to be a source of frustration and melancholy has become motivation.  I have one shirt I thrifted 2 years ago.  I kept it in my closet because it was a reminder that if I wanted to wear that pretty shirt, I had to get better.  I wear that pretty shirt all the time now.  CHEESY SMILE!!!!  I believe that anyone can do this.  You have to believe you can do this.  You have to stop letting the pain and fatigue win.  I used to sit on the couch for so long in the morning that the fatigue came just because I wasn’t getting up as soon as my coffee kicked in.  I was just at home, why did I need to get up?  GET UP!!!  As soon as your meds kick in and you have a little relief from the pain or you feel your brain kick in, get up.  Get up, get moving and tell yourself that you’re not going to stop.  If I do sit down during the day, I make sure I’m upright, sitting up straight.  Posture is everything.  When you lay down, even in your recliner, you are telling your body that it is time to go to sleep or to nap.

The other night, my hubby and I celebrated our 14th Wedding Anniversary.  It was a Tuesday, so after work, he and I dropped off the kids with the Grandparents and went to dinner and a movie.  Dinner was from 7:00 pm to 8:00 pm and our movie didn’t start until 10 pm.  After the movie and picking up the kids and “celebrating” at home, we didn’t get to bed until 2 am.  The next day, I felt like crap.  I let myself sleep in one hour (8 am) and then I was up and moving.  Music, coffee, green tea all kept me going.  I kept in mind why I felt this way though and rested more than I normally would.  This recovery of mine is all about baby steps and being conscious of what I need to do to keep going.  I also have to be forgiving of myself.  Even when I do sleep well, I sometimes feel fatigued.  I’m okay with that though.  I don’t let the fatigue win.  I acknowledge that I’m fatigued or in pain and I move on.  Stretch out those muscles that are aching.  This doesn’t have to be a super stretch.  Sometimes just warming those muscles up a little and gently moving and stretching them are all they need.  Sitting on the couch or laying in bed will only stiffen them up more.  The more little things you do, the less you will hurt.  The little things pave the way for the big things.

Stay positive and be kind to yourself.

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The Fibromyalgia Handbook-Step 2

I am currently reading The Fibromyalgia Handbook: A 7-Step Program to Halt and Even Reverse Fibromyalgia, Third Edition by Harris H. McIlwain, M.D. and Debra Fulghum Bruce, M.S.  I have to start out by saying that after my last post, I finished reading Step 1: Start With Medical Treatment and found that the author said almost the same thing I did.

“Although there is no quick fix, you can find success with treatment using a trial-and-error procedure.” (pg. 97)

While this is an extremely frustrating process and can leave you feeling like a guinea pig, with Fibromyalgia, there is little choice.  That doesn’t mean that finding the correct mix of medications and supplements is impossible but it is different for everyone.  My doctor made a very valid point to me.  It was something that I had read before but didn’t really consider being a problem for me.  Just because you have fibromyalgia, doesn’t mean you don’t have anything else.  The majority of blogs I’ve read on Fibromyalgia are written by people suffering from more than just Fibromyalgia.  My problem is that my old doctors were saying that all I had was Fibromyalgia and wouldn’t look at anything else or even consider that maybe my normal was different than the standard normal.  As soon as I said the “F” word (Fibromyalgia), nothing else was considered.  My doctor is currently running a clinical trial on me to see if thyroid medication would help me because I have almost every symptom of under-active thyroid.  He also has me taking adrenal support and magnesium malate.  My previous doctors wouldn’t even consider doing anything like that.  My former neurologist also gave me a big speech about how the vitamin industry is not regulated and tried to tell me that generic medications are only required to contain 20% of the medication (according to my insurance company this is false).  He really discouraged anything not put out by the drug companies.  Step 1, in a nutshell, is start with moist heat twice a day and if you still have pain then add medications.

Step 2 is to exercise daily for mobility and energy.  One of the big questions I had at the beginning of this chapter came out of this statement:

“…exercise is more effective in easing the symptoms of fibromyalgia than medication or alternative treatments.” (pg.99)

If exercise is so successful, why not start with that?  I’m pretty sure that every doctor I’ve seen has suggested yoga, but I was reluctant to believe that yoga would cure all my ills.  One of the hardest things for me to understand with this disease is that there is no quick fix and no magic pill.  At least not yet.  I’ve since started doing the stretches contained in Step 2 and have begun to notice the benefits.  I listen to my body and when I feel the tightness start, I do the warm-up and then the stretches.  I’m considering going back to a physical therapist, although the last time was torture.  One of the ideas in this chapter that I really like is to warm-up and do stretches before doing daily living activities like showering, laundry, or dishes.  My biggest obstacle to working out has always been that I don’t have time with all the other things I have to get done, especially when most normal daily living activities take all the energy I have.  I also have the DVD Anchor Bay’s Healing Yoga for Aches and Pains (thanks again to my awesome library) and whenever I am at home and feel in a lot of pain despite all the pills I’m taking, doing just the first section of deep breathing and stretching helps.  I would also like to try out the warm water pool we have nearby (25 min. drive) but I’m still waiting to hear on my disability appeal.

This chapter has a lot of great alternative ideas for getting exercise daily and explains how to divide your day so that you do get in the necessary exercise and stretching.  I would encourage all my fellow Fibro Fighters to check out this chapter if you are having trouble getting motivated to exercise or if you are like me and just don’t think you have the time.

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Update to Glutton for Gluten Punishment

Apparently, someone who works with my hubby saw me walking home from the library and told him that I looked like I could barely walk and like I was in so much pain. She would’ve stopped to offer me a ride but I was almost home. I wish she would’ve driving by 10 minutes earlier! I got in a kiddie pool with my little one last night and it was even warmer than the big pool but I still hurt while moving around and hurt even worse after. I’m not sure if that was from the exercise or from the cold front moving through. All I know is I was awakened at 6 am thanks to my pain. Ouch!

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Funk

No. Not B-O funk.  And no.  Not George Clinton and Parliament Funkadelic funk either. Now The Black Eyed Peas song “Smells Like Funk” is stuck in my head, but that’s not what I’m writing about either.  I’m in a what-am-I-good-for funk.  I’m in a even-if-I-could-work-no-one-would-want-me funk.  I’ve been seriously considering whether I could return to work.  Not because I feel well enough to but with the hope that this new doctor I’m seeing next month will be able to kick fibromyalgia’s butt and I’ll be feeling like my old self again.  As I am right now, with the spasms and pain, not to mention fatigue, I know that going back to work would be impossible.  It’s funny that I think of fatigue last, when it is the biggest obstacle.  It’s hard to concentrate on what you’re doing when you’re having spasms, which can be painful or when you are in pain, period.  But it is near impossible to concentrate, let alone stand, when you are fatigued.  I’m not talking just a little tired, although I feel tired all the time, whether I’ve slept good or not, whether I’ve taken naps or not.  Fatigued means having zero energy, dizzy when standing, dozing off all day, feeling like you can’t move your arms or legs, feeling like you have a pound of bricks for brains and if your head weren’t attached, it’d go rolling off your body.  I cannot remember the majority of April.  Me and my three-year-old slept in till 10:30, we rarely went anywhere and I had a couple of trips to pick up my kids where I honestly felt like I might fall asleep while driving.  Now that we’re into June and I haven’t had any fatigue days, just pain and spasms, I’m wondering whether I can go back to work.

All I need is an employer who’ll allow me to take naps during the day, sit in a recliner so I can keep my feet elevated, and will allow me to take any sick days I need when I’m fatigued or in too much pain to work.  If the barometer is shifting, I’ll need that day off too.  Also, no stress.  I cannot handle any extra stress.  Forget socializing, because I don’t do that.  Unless you want someone with no TMI filter talking to your most important clients and board members?  Don’t I sound like the ideal candidate?

So far, the only job I can come up with is stay-at-home Mom and I’m already doing that for free!  I take that back.  I do get paid in hugs and kisses and little kid jokes.  My kids are the best and I wouldn’t trade them for anything.  Maybe a hot tub.  I really want a hot tub.  Joking!  Only joking.  The two older ones are pretty much self-sufficient.  Unfortunately, they are masters at pushing each other’s buttons, not to mention mine.  They almost make up for all the fighting, both physical and verbal, with the help they give me with the three-year-old.  In August they’ll go back to school and the little one will go to preschool, then what am I going to do with myself?  Will I finally be able to do my Deepak Chopra’s Leela game?  I really liked it the one time I got to play it.  Will I finally be able to go to the heated pool in Greeley?  The drive to Greeley and back might make the exercises in the pool pointless.  Right now, the majority of exercise I get involves laundry, dishes and picking up the crap everyone else leaves laying around.

So my funk continues…and that song is still stuck in my head!

 

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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.

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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.

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