Fibronaut At Home

I Got It!

This is a couple days late, but, I got the job!  The interview went great.  I felt so confident going into it.  I really worked on several key points that I learned from Gretchen Rubin’s “The Happiness Project”.  I acted how I wanted to feel; confident, happy, open, willing and able.  Instead of dwelling on what-if’s and worrying about what would happen or wouldn’t happen, I thought, “This is going to be fun!  This is going to go great!  I got this!  This job is mine!”, over and over.  Whenever I could feel my mind veering into uncertainty and fear, I repeated my mantra, smiled, and took a deep breath.  And it worked!

I was supposed to hear by the end of the week, but the manager called me a couple hours after my interview.  I start on Monday, and couldn’t be more excited for this next chapter in my life.  I have no doubt that I’m going to be able to balance work and family.  Knowing what my priorities are and focusing on what means the most to me is what’s key.  I know that I need to make sure I eat well and keep up with my exercise regimen to avoid any fibro or CFS flare ups.  Eating small snacks to avoid the shakes or hanger (hunger anger), making sure I take my meds on time, not focusing on little mistakes, laughing at myself, being patient with others and myself, will all be in the back of my mind.  All the things I thought I was getting away with before, but were really hurting me, I’ve done my best to address.  Now comes the test.  Can I do this?  Yes.  I can.

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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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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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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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Mommy Bubble

I feel like a genius for coming up with this so feel free to use it as much as you want.  One of the most difficult things to explain to my children is how much I hurt.  My older two are pretty gentle with me, but my four-year-old still wants me to be a trampoline/jungle gym/bed.  I want to hold and cuddle and snuggle my kids any time, any where.  With fibromyalgia that just isn’t possible.  Today I had a doctor’s appointment at the way-too-early hour of 9 am.  My doctor is an hour and a half away, so that gave me a 6:30 am start.  Plus, I had run out of my amitriptyline the day before so I didn’t sleep well.  My hubby drove but there was lots of construction and traffic.  All that stop-and-go has my neck spasming and a headache coming on.  Let me just make this easier.  I hurt really freaking badly.  I am at the point where I want to call my Mommy and whine and hope she’ll come take care of me.

I was able to convince (force) my children to help me fold laundry but now I hurt worse.  Back to my brilliant idea for struggling Mommies everywhere.  As soon I sat down with my green tea, heating pads in place, feet up, blinds closed, the four-year-old decided that she needed to squeeze in between me and the couch.  She had a half of a foot of room and I could foresee that some pointy, bony part of her was going to end up in one of my tender points.  I didn’t want to hurt her feelings or yell at her but I needed to get her to understand that I was serious about her not sitting that close to me.  So I told her I love her but right now I hurt so I’m in my Mommy bubble.  Success!  She didn’t get her feelings hurt, I didn’t have to get grumpy and the kids are laughing about me and my bubble.  I don’t plan on using my bubble all the time, just when I’m at my worst, like today.

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Weekend Warrior

Weekends have always been the most difficult times for me. My normal schedule is interrupted by family events, kids’ activities and whatever else didn’t get done during the week. I rarely get to rest like I need to because we’ve always been ones to get started early with whatever we’re doing. So I often push myself too hard on the weekend. With only one income, we are less likely to squander any time at an activity that we’ve paid for, such as the zoo or the museum, since we don’t know when we’ll next be able to afford to do something fun outside the home. That means that we leave as early as possible and stay as long as possible. I spend most Mondays recovering.  My husband works all week and has the most desire to get things done on the weekend. When the kids are in school, this is not a problem but during the summer, weekends are hell. I don’t get several days during the week with the kids in school to recuperate. I’m in Mommy mode 24/7.

We had family visiting from Texas this weekend. It is now Wednesday and they left on Monday but I am still recovering. We had some stormy weather come in yesterday so today has been spent trying to get comfortable with the lingering aches from this weekend and the headache and body aches from the weather. We did so much this weekend and I didn’t want to miss out on anything. Two full days is nothing when you haven’t seen someone you love in what feels like forever. I have learned that there are some moments in life, that no matter the consequences you have to grasp. Pain and fatigue are going to be there whether you are sitting on the couch alone or going somewhere with your family. Focus on the smiles and laughter. This is the hardest part for me because it hurts my face to smile or laugh.

We went to an amusement park. I did things with the little kids mostly. They wanted to swim, which mostly involved standing in the shallow end of the wave pool. There was some walking between the kiddie area, the wave pool and our cabana, but I took it slow. A couple trips on the lazy river holding my three-year-old in an inner-tube was doable. One trip down a raft ride was a huge mistake though. There were a lot of stairs and I was shaking and nauseous by the time we got to the top. I almost gave up but figured it would be easier to climb the rest of the way up and ride down than to trust my shaking legs with walking back down. With the reserved cabana and plenty of other adults, I was able to rest as much as I needed. I took the two youngest on little kid rides and they were tall enough to ride by themselves thankfully. I sat a lot, hurt a lot and yawned all day but I had fun. Fun! Such a foreign concept to me now as I spend most of my time just trying to be comfortable enough to be present.

We also went fishing the day before but I spent the majority of that venture in my lawn chair. But I was there. That is the important part. Just call me the human bump on a log. I don’t care. I was in my element, watching my kids and their cousins on the playground, refereeing their disagreements and laughing at their antics. So I’m still recovering three days later. Who cares? It isn’t like I have anywhere else to be or anything else to do. I would like to be working on my daughter’s Birthday present. I would rather be sewing and laundry is piling up again. I have a very dirty bathroom and should be cleaning it but that just isn’t going to happen right now. I am going to watch the rain and hope that the aches subside soon.

I’ve already spent too long on this post according to my fingers and my shoulders. As I’ve been zoning out for the last five minutes, trying to determine how to end this post, it has stopped raining and the birds are playing in the puddle at the end of our driveway. I can see some blue skies on the horizon and the sun has started to shine through the gray clouds. A kid is out riding his bike already and a little squirrel just scampered across the lawn. Now the birds are singing and I am zoning out again. The pain is still here, along with the fatigue. I feel like I have cotton for brains. I’m hungry and there are plenty of leftovers but I’m feeling kind of down so I’m craving chocolate cupcakes. Weekend Warrior + Fibromyalgia + CFS = the rambling randomness of this post. And I still don’t know how to end this.

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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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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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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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