Fibronaut At Home

Interpretive Dance Like No One’s Watching

My daughter Emma is the princess of interpretive dance.  It doesn’t matter where she is; if she hears a beat that catches her ear, she starts dancing.  This morning, as I’m listening to my playlist with Beyonce, Fergie, Jennifer Lopez, Shakira, Meghan Trainor, Destiny’s Child, Iggy Azalea and Nicki Minaj, it occurred to me that I do the same thing.  I’m better at hiding it in public than she is.  I only do shoulder movements, head bobs and swaying hips.  Um.  Maybe I’m not as good at hiding it as I think I am.

Sometimes I get bored with my same work-out DVD’s.  Even ordering different ones from the library doesn’t help.  I just like my music so much that I want to do those moves to songs I like listening to.  Cue interpretive dance as a workout.  I already find myself thinking of the moves I do with the DVD’s that would go with the beat I’m listening to.  I already dance around my house.  Any movement is more than sitting down doing nothing, right?  Hopefully, my hubby’s claim that no one can see me through the windows in the day is correct.  If not, I hope the neighbor’s appreciate the entertainment.

I’m also reminded of a conversation that I had with my Brother-in-Law.  He went to school to be a personal trainer, so whenever I have workout questions, I ask him.  When I was still couch-bound every day, I asked him if just tightening my abs while I sat there was working the muscles.  He said it did, which made me feel like at least I was doing something, even if I wasn’t in full sit-up or crunches mode.  Start small and build from there!

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Not Everyone Will Get It

I have to keep reminding me of this.  I cannot begin to describe how proud I am of myself and how far I’ve come.  Not everyone gets my recovery though.  Although I want to explain, I have to stop myself.  When I was ill, I grew to hate that every conversation I had was in reference to fibro and CFS.  The same thing can happen in wellness.  Everyone wants to know what helped and while I want to share, the answer is not simple.  Simplifying what I did to get where I am now, feels like I’m belittling all I’ve accomplished.

Once I start breaking down everything I’ve been doing to be well, I start thinking I can do without some of those things.  I tried taking only one Naproxen the other day.  I had one of my worst days in memory.  I worked out, blogged, did laundry and cleaned house.  Out of nowhere, along with the extra little pains, came the depression.  I realized I wasn’t listening to my music either.  When I don’t listen to my music and I’m not dancing around and singing, I carry all this tension in my body.  I’m gritting my teeth and my brain is going deeper and deeper inside itself.  Then come the negative thoughts.

Lesson learned:  I don’t need everyone to understand.  Those who are close to me, know.  My hubby gets it and my kids get it.  Having to listen to music, work out, create, eat right and recycle, these are all things that give me positive vibes and help me cope with all the other junk of life.  It’s not a bad thing to need these.  The bad comes when I deny my soul the things I need to flourish.  I feel so much better having written this.  Deep breath in and deep breath out.  I’m content.

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GOOOOOOOAAAAAAALLLLLLL!!!!!

I just had to.  We love watching soccer, but don’t actually watch a lot of it.  The World Cup has reminded us of our love for the game.  With our budget, we are on the family plan of Directv, and consequently, most of the games we watch are on the Spanish channel.  We don’t speak Spanish, but they sure add some excitement to the game.

Moving on….

This post has been simmering in my mind for a while now.  Setting goals for myself has been one of the most effective tools in my road to wellness.  I had to look back at my journal to find these.  I started simply, picked  goals that were the most important to me.  1.  Write in journal.  2.  Meditate.  3.  Yoga.  4.  Hug, kiss, love family.

These were my first goals that I set on November 7, 2012.  It is awesome to look back and see how far I’ve come!  At that point, I had started recording what I ate and what I did throughout the day to try and track where my pain was at and really focus on what I was putting into my body.  It really gave me a good idea of what I needed to change in my eating habits.

I found a revised set of goals on July 9, 2013.  1.  Shower.  2.  Journal.  3.  Meditate.  4.  Love.  The simplicity of this list may seem pointless to some, but at that time, I couldn’t handle more than that.  Those were the things I knew I needed to do to heal myself.  

I found “BABY STEPS” written in the margins a couple times and also this list of steps that I felt would help me “be healthy and happy both mentally and physically”.  1.  Focus on the positive.  2.  Offer encouragement.  3.  Yell less, hug more.  4.  Be a better listener.  5.  Be conscious of what you say.

By August 6, 2013, my goals had expanded to add friendship, blog, sew and clean.  I stopped writing in my journal after that.  At this point, I was trying to add getting my kids to school in the morning to my list.  That turned out to be a little too much for my energy level and our budget.  My husband was going that way so it made more sense for him to take them.  I let myself go backwards at that point.  I felt like I had no reason to get up in the morning.  Even if your life changes, there are certain things that are good to keep.  Getting up in the morning with my kids gave me time with them and I felt better with a set wake up time.

February 2014, I got back to my sleep schedule.  I set my alarm for 7 am whether I have anywhere to go or not.  I try to go to bed at the same time, knowing that even if I don’t or if something wakes me up (like my 5 year old kicking me in the face), I don’t have to let that ruin my day.  March 31, 2014, I started journaling again, keeping track of what I did all day; writing down what I was doing and the time I started.  My journal sat on the kitchen counter.  I was amazed by all that I accomplished in a day.  Writing down the time I started something made it crystal clear how long or short tasks took me to complete.  When you are on the internet or watching television all day, you lose so much time.  Tracking my time made me aware of how I was spending my time and let me set goals to spend that time better.

I set goals again, but they expanded beyond what I ever thought I’d be capable of again; feed the cats; straighten the bed; shower; clean the cat litter; dishes; straighten the bathroom.  I started with those things and built upon them.  It became a challenge to me.  I even wrote “no excuses” a couple of times.  There was no judgement if one day’s list was longer than another day’s.  Being kind to yourself, forgiving yourself and loving yourself is key.

May 21, 2014 was the last day I kept track of what I did all day.  I started to notice I was writing less and less of what I’d done with the time; not because I wasn’t doing anything, but because I was doing so much that it became tedious to stop by my journal all the time.  I feel so positive now, that I don’t need to chronicle every little achievement.  I can look at something, see the changes I’ve made in that part of my environment and feel pride in myself.  I don’t look at the things I do with a critical eye and I don’t talk down to myself.

I’m still the same person, I just look at everything differently.  I don’t wish things were different, I make them better, or I let it go.  It is a beautiful way to be.  Yesterday was kind of rough.  We did so much the two days prior and went to bed so late, that I was dragging butt all day long.  We went to a late lunch and then to an arcade/mini-golf place.  I mostly sat and read, while I let everyone else run after kids.  I just didn’t have any fuel in the tank.  And it was okay.  I was there, even if I wasn’t up to participating, I was there.

Today, I’ve already checked my garden, watered the lawn, posted to both blogs, and started laundry.  I have plans to finish laundry, weed the garden, do my Zumba DVD, and finish a skirt I started sewing last week.  I may even do more than that, but even if I don’t, it’ll still be okay.

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More Workout Trial and Error

Oh Lordy Magordy!  I just did the majority of Piloxing.  It was awesome.  The workout combines boxing pilates and she even adds some dance moves.  I love Vivica Jensen, the woman who does the DVD.  She has a great attitude and reminds you to only do what you can, but to try and push yourself.  I also love that the women doing the workout with her are different sizes and different levels of fitness.  I think most fitness DVD’s only have people who are really in shape doing the exercises.  When I was huffing and puffing or had a pain face on, I could see that reflected in other women’s faces.  It was nice because I didn’t feel so bad for being out of breath or for modifying the moves if they were too much for me.

I didn’t do the floor portion of the workout, but I did try.  My muscles felt like jello after the standing portion, so I just skipped to the cool down.  The DVD also reminded me what I liked so much about pilates.  Pilates helps you to lengthen your body and muscles.  You are toning without bulking up.  I had a huge smile on my face at the end.

I also tried Belly Dance Fitness for Weight Loss: Cardio Shimmy.  I thought I’d love this one, because I loved the other belly dance DVD by the same company.  I didn’t make it past 5 minutes.  There’s a lot of fast moves on your tip-toes.  I felt like the hippo ballerinas in Fantasia, except less graceful.

After having the kids making fun of me when I was working out the other day, I decided to work out before they woke up this morning.  Don’t ever let other people’s opinion of you stop you from doing what you want or need to do.  There’s a reason I don’t go to fitness classes, and since The Peanut Gallery can’t contain their horror at me in a sports bra and shorts, I’ll just work out earlier.  It’s good for them to see what a real, unphoto-shopped body looks like though.  I think that when the cousins go home, I’ll continue my normal workout routine.  When my kids complain about me working out, I’ll just make them work out with me.  Ha!

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Finding A Workout that Works For You

*I am not a doctor.  Consult your doctor before starting any workout program.*

When I was first diagnosed with fibro, this was one of the biggest challenges I faced.  Every doctor I visited and every book I read said, “Do yoga.”  For me, going to a class was out of the question.  I was depressed and full of anxiety in relation to how others saw me.  My spirit was in the fetal position unable to handle anyone’s criticism, no matter how compassionate.  To me, no one understood the pain I was going through.  I checked out numerous DVD’s from my library and got seriously frustrated.  I couldn’t make it through the warm-ups on those DVD’s.  I gave up.  I told myself I wasn’t going to get anywhere exercising.  I told one of my doctors that I didn’t have time to exercise.  What I meant was that I had limited time in my day.  If I had the energy to do anything, it wasn’t going to be exercise; it was going to be something for my hubby or kids like housework or doing something with them.

Here’s what I figured out in doing housework; I was working out!  Every load of clothes I separated, every time I loaded or unloaded the dishwasher, I was exercising.  When I was warmed up, I would stretch out the muscles that were tightening.  I started to tweak the way I did some chores as I noticed that doing them more often made them easier.  Getting things done makes me feel good.  When I notice something out of place or dirty and I take care of it, BOOM GOES THE DYNAMITE, instant mood booster.  It was through housework exercising that I first started losing weight and inches.  (Getting off of narcotics and Lyrica and Cymbalta helped also.)

I also finally found a workout DVD that I could do.  That’s right.  One DVD is all it took to start getting my body back.  Healing Yoga for Aches and Pains started me on my path to wellness.  There are a lot of moves on the ground and sitting down.  I did hurt my back once when I got a little too enthusiastic with my stretching.  Go slow and don’t worry if you feel like you’re not really working out.  The best workouts don’t feel like workouts at all.  My favorite part is the last, where you are laying on the floor with your legs resting on a chair and just breathing.  That move always leaves me feeling centered and ready to conquer anything.

Now that I’ve been building my muscles, I’ve been trying some regular workout DVD’s.  I’ve always liked dance workouts and games.  We traded in all my dance games when I thought I’d never be able to do them again.  Now I want them all back.  I really like Zumba.  There are tons of options in the Zumba workout DVD’s and I’ve checked out a couple of them from the library.  My favorite dances are the salsa and the Mexican dances.  They have a special name but I can’t remember it and both times I tried to search for it, I even confused Google.  Ha!  There are some that I don’t like, so I skip them.  At first, I couldn’t figure out the Calypso moves.  They were too fast and there was too much hopping that I couldn’t figure out.  The last time I did a Zumba DVD, I tried the Calypso steps and was able to do them!  Made me feel great.  I love that they have choices between just dancing and having the instructors tell you what to do.  I started out learning all the moves.  Now I can do the dance party.  Just a warning, Zumba is addictive.  I find myself thinking of Zumba moves whenever I listen to music.  I always dance around the house, but now I’m Zumba-ing around the house.  My 5 year old loves it and is doing it too.

I’ve also tried a Hula DVD, Island Girl Dance Fitness Workout for Beginners: Hula Abs and Buns.  It is easy and low impact.  The most difficult move is a lunge move but you can always skip moves that you find too difficult or that might cause you pain.  I love this DVD because you learn an entire dance while working out.  By the end, you combine all the moves in a dance.  I am a fan of workouts that make me feel like I’ve accomplished something at the end.

After being turned off by all the corny belly dance DVD’s that I tried, I finally found one that I like.  There were several belly dance DVD’s that I couldn’t get through the first move they were so corny (Here’s looking at you Goddess Workout).  A huge high-five to my kids for not cracking up at the corniness of The Goddess Workout: Intro to Belly Dance before I did.  The DVD I did today was Belly Dance Fitness for Weight Loss featuring Rania: Hip Hop Hip Drop.  They go through the moves slowly at first and then speed them up.  You learn an entire dance with this one too, combining all the moves into a dance at the end.  If you don’t like Hip Hop music, don’t worry.  There isn’t any Hip Hop.  I’ve just requested Belly Dance Fitness for Weight Loss featuring Rania: Cardio Shimmy.  If you find something you like, look for other things like that to keep your workout interesting.

As with everything else in wellness, it is a learning process.  If one thing doesn’t work, try something else.  Also, just because something worked once, doesn’t mean it’s going to always be for you.  My example of this came through a DVD that I used to own pre-fibro and decided to try because I remembered how much I liked it before.  10 Minute Solution: Pilates used to be my favorite thing to do.  I did the 10 minute ab workout 2 or 3 days ago.  My abs are still screaming.  Pilates is definitely not for me at this time.  Maybe I’ll go back to it later, but right now it is not for me.  The belly dance DVD helped with the soreness in my abs, but I’ve learned my lesson there.

If you are doing a workout and there is a part of it that you dread to the point where it keeps you from working out at all, then don’t do it.  Find another option.  If you are bored by any of your workout, don’t torture yourself through it.  Don’t give up, find another way.  Try, try, try and try again.  I even ran today.  I was in my pajamas and trying not to get hit by the sprinkler, but I ran.  It didn’t even hurt.  I’ve even been thinking of going for a run with the kids.  Forget walking!

I don’t write this to hurt anyone else’s feelings or make you feel like you aren’t doing enough.  That is for you to decide.  If you think you should be doing more, then do it.  Encouragement!

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 Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes!  Yes! 

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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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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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Day Dreaming

I was just looking at the houses for sale in the community that me and the hubby have always dreamed of living.  After all the coulda-woulda-shoulda’s and all the disappointments of the last couple years, it’s really nice to have dreams again.  I’m filled with hope.  Our day will come and hopefully we’ll appreciate it all the more.  For three years, my only focus has been fibro and CFS; How I’m feeling and not much else.  I feel like I have a new focus.

The hubby and I had a conversation while in a meeting the other day.  I found out that he isn’t all that concerned about me going back to work.  I just assumed that was the end goal.  Turns out he likes me staying at home, taking care of the kids and me.  How lucky am I?  For now I’m just home with the kids for the summer.  Next year I’ll try my hand at volunteering at their schools, maybe join the PTO.  It’s really fun to torment my 12 year old that I can’t wait to see him when I volunteer at his school next year.  Maybe I’ll have to start using that as a reward; Do this for me and I won’t show up at your school next year.

I’ve even been socializing.  GASP!  I’ve been socializing and not over-thinking every conversation or re-playing every moment and judging myself.  If I find myself starting that mess, I just say out loud, “What other people think of me is none of my business.”  Sometimes, I even Richard Smiley it and go look in the mirror.  Say it with me: “I’m good enough.  I’m smart enough, and doggone it, people like me.”

I still want to write on my sewing blog more.  I let it go as long as I’m taking the time to sew instead.  I have lost a little weight and gained a little muscle, so I need to take in some of my clothes too.  I’ve even been doing workout videos.  Real ones.  Not just yoga for aches and pains and arthritis and older people.  I did Zumba and I did a hula one.  When somebody tooties their flutie, I gots to shake my booty (Donkey from Shrek), and now I can do it without hurting myself.

My house is clean.  This deserves it’s own paragraph because, holy crap, it’s freaking amazing.  It’s clean and I did most of it.  The trick is, once you get something clean, you clean it again before it’s at the FUBAR level.  My living room gets vacuumed every other day and the toilet gets cleaned whenever it looks even a little bit dirty.  I do dishes after every meal and I do laundry twice a week.  I don’t sit down on the couch.  That used to be my spot.  I close all the recliners, fold all the blankets and stack the pillows, so I’m not tempted.  As soon as my bed is empty, I make it.  I am much more reluctant to mess it up after I take the time to make it pretty.

I’ve struggled a little with people’s reactions to how much better I’m feeling.  It’s not a miracle, just a lot of little things that I’m doing right.  I don’t allow negative thoughts and I shake off any negative feelings.  I stay positive and when I feel myself slipping, I write in my positivity journal and I listen to my upbeat, encouraging music.  I started small.  Small goals and small jobs around the house.  Every day I added new goals or I cleaned one more thing.  I’m going to paint a sign to hang above my front door that says, “Make today awesome.”  I want my whole family to experience the happiness and contentment I’m feeling right now.  I didn’t write about this sooner because I didn’t want to jinx it.  Now, I’m not going to shut up about it.

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Where Do I Go From Here?

I received my letter detailing my Social Security unfavorable decision.  I received it Friday and finally got the nerve up to ready it today.  I didn’t want to ruin my weekend and I already had enough anxiety about going to Jury Duty on Monday.  Jury Duty went better than I expected.  The Jury Commissioner had a great sense of humor, which made everything easier.  I had to stay all day, but we had a lot of breaks in the morning, so I was okay.  The afternoon dragged on and on and I hurt much worse than I had in the morning, but sitting on a wooden bench, even with a back, will do that.  I still hurt today and I’m still tense, but that was to be expected.  I was able to stay positive about the whole experience.  I wasn’t picked to be on the Jury, but felt like even if I had been, I could have handled it.

Back to the real reason I’m so tense today.  Basically, the judge said I wasn’t believable.  Mostly due to the opinion of the first neurologist I saw, Dr. David Ewing.  If you are unfortunate enough to come across this doctor, run (or walk speedily, whatever works) in the opposite direction.  Nearly every lady with fibro that I know, when I tell them he was my doctor, they curse about him, say he’s the worst doctor for fibro or have some negative story about him.  Even my attorney has heard the horror stories.  If you are seeing a doctor who doesn’t listen to you and refuses to explore any other options than medication, same thing.  I’m not knocking fibromyalgia medications, I take prescription medications.  In my opinion, fibro and CFS require a doctor to think outside the box.  The thing that helped the most with my CFS has been thyroid medication.  No other doctor would even refer me to a doctor for my thyroid.  Even the doctors that diagnosed me with fibro and have seen me more recently were considered less credible (not sure if that’s the correct word) because the judge thought they based their opinion on my complaints.  He also said that there were no tests showing a reason for my pain and acknowledged that in cases of fibro and CFS that there aren’t.  Apparently, I only walked as if I was in pain some of the time.  I also told them that it doesn’t always hurt to walk, but whatever.

I feel discouraged.  I don’t think I can come back from a judge’s opinion and Dr. Ewing’s opinion that they don’t believe that my pain is to the extent that I’ve reported.  I’m pretty done with it.  I know a lot of people will tell me not to give up, but I don’t feel like that’s what I’m doing.  I’m recognizing their opinion and I understand why they feel that way.  I feel like the only thing I can do is accept this and move on.  Raging against this will accomplish nothing.

I have the support I need to do this.  My husband, his family and my family are awesome.  I’ve rekindled some friendships from high school that have healed me more than those beautiful women will know.  It’s a wonderful thing to know you can pick up the phone or get on Facebook and have a conversation with someone who knows you down to your soul and only wants what is best for you.  I have amazing examples to follow.  My Dad, my Step-Father (who I also call Dad), my Mother, both my Mothers-in-Law and my Father-in-Law have all worked with pain.  They haven’t given up and I can’t either.  Every day I wake up with one priority: To be a good example to my kids.  Every time I whine about my problems and find excuses not to do something, I’m telling them it’s okay to make excuses just because something is difficult or because I hurt.  I can’t do that.  It is not the example I want to set for my kids.  No matter how bad my pain or fatigue I want them to see me pushing myself, going outside my comfort zone and rolling with the punches of life.  If I am too tired or in too much pain, I explain that, but always before I have a little honest conversation with myself about why I’m really telling them no.

I’d also like to make a special request.  If you are going to make any negative comments towards me or my attorney, I really would rather you keep that to yourself.  I have to stay positive for my husband and my children and I cannot even entertain thoughts of unfairness.  Sometimes life is unfair.  The judge feels that I could be a teller at a bank and if it takes trying to do just that and seeing what happens, I’ll gladly do that.  Since my diagnosis I have learned one very important thing.  You never know until you try.  That’s all I can do.  Try.  My husband would chime in with the quote from Yoda, “Do or do not.  There is no try.”  That certainly applies in this case.  I made him a painting of this quote and I read it every day.  No more excuses.  The pain and the fatigue are going to be there, I need to learn to deal with it.

 

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Winning!

I was cleaning my house and debating on whether I should post about how much better I’m doing.  I worry about how others will perceive my progress. Fibromyalgia and Chronic Fatigue Syndrome are not contests to see who has the most pain or is the most tired.  A lot of the Fibromyalgia support sites I follow on Facebook have too much if a “woe is me” attitude.  There was a time when I needed that and when I needed to feel like people understood what I was going through.  Every day, I move more towards a feeling that I don’t want Fibromyalgia and CFS to be the only thing people think about when they see me.  I don’t want to talk about it all the time, like I used to. I want to hear about you and your beautiful life and all the awesome things you are doing, despite this illness.  I want to talk about how much better I’m doing without hearing, “So, you’re better now?”  No.  I will never be cured.
I love all my fellow sufferers but, we need to remember something: Fibromyalgia and CFS are not terminal.  If you are suffering from other things, I totally understand how it’ll be different for you.  Everyone’s experience is different.  We shouldn’t judge others based on their experiences and we shouldn’t judge ourselves either.  For me, I have to remind myself daily that life is what I make it.  I have choices from the time I wake up until the time I go to bed.  I have to “suck it up” and do what I know I need to do.  When we are playing games and my kids ask me, “Am I winning?”, I always ask, “Are you having fun?”.  If their answer is yes, I tell them they are winning.  I guess the next time someone asks me how I’m doing, I’ll say I’m winning.

(Picture a super-satisfied smile on my face right now.  That’s how much I love me right now)

 

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