Fibronaut At Home

The Happiness Project

I have finally started reading “The Happiness Project: Or, Why I Spent a Year Trying to Sing in the Morning, Clean My Closets, Fight Right, Read Aristotle, and Generally Have More Fun” by Gretchen Rubin.  Julie Ryan of Counting My Spoons, suggested the book to me months ago and I’m so glad that she did.  I’m only half-way through, but I already love the book and I’m heading back towards the totally awesome me that I found in April.  I’ve been in a slump lately, which is the main reason why I haven’t posted here.  I didn’t want anyone to know that I was struggling, though my hubby and my Mom knew.  I’m ecstatic and relieved that I’m back.

The main goal that is sticking with me now and that could be life-altering for anyone, but especially for others like me with Fibromyalgia and Chronic Fatigue Syndrome is, “Act the way you want to feel.”  I was already trying to do this and seeing that it worked for someone else, really helped me.  I think I went into a slump because I was starting to wonder if what I was doing was really working.  Rubin had a similar experience.  Reading that made me feel like I wasn’t alone in my doubts and gave me tools for combating the negative thoughts causing those doubts.

Even though I was doing all the right things, doubts crept in and the old conflict of to-work-or-not-to-work started playing havoc with my mind.  If I don’t work, there isn’t any money for extras and if I do work, there isn’t any time for extras.  I want a part-time job so I can still pick up the kids from school and spend my evenings and weekends with them, but most places only have full-time available, or I just can’t imagine working there.  I talk myself out of jobs before I even apply for them.  I have finally come to the conclusion that, when it’s right, it’ll happen.  When I find my mind going to that black hole of never-ending worry and what-ifs, I sing to myself, “Que sera, sera.  Whatever will be will be.”  A little silly, but it works.

We’ve also had extra stress dealing with some school issues.  I’m not going to go into it.  I think we’re almost through it and I can look back and see that despite all the stress, some good things have come out of going through this.

I’ve gone back to keeping track of all I accomplish each day.  Even if no one else notices, it makes me happy to see all these tasks completed.  I have a spreadsheet I found in Microsoft Excel that’s meant for a chores list, but works perfectly for me.  Each week, I’ll start a new spreadsheet, so I can look back and see how much progress I’ve made.  There are some tasks that I do daily, some I do twice a week or more and some I only do once a week or once a month.  I don’t have to look to my hubby or my kids for validation that I’m reaching goals.  I’ve also added several items since I started.

I’m learning to find the positive in every situation, no matter how bleak.  I’m learning to be grateful for where I am, who I’m with and everything that I once took for granted in life.  Those are some pretty big statements, but I’m confident in them.

I’ll probably post again about this book because there is so much helpful advice in it.  I would recommend this book to anyone, whether you feel like you are happy and especially if you don’t.

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Slow and Steady-Tips for Grocery Shopping without Killing Yourself

As I limped through the grocery store today, I realized something.  I have yet to do a post about grocery shopping with Fibro and CFS.  I’ve mentioned that I don’t do it, but that has changed somewhat in the last year.  I occasionally go to the grocery store.  I am more apt to go when I have the kids to help me or my husband to drive me.  I usually try not to do anything else, especially if I’m by myself.  Today, I had other ideas.  The stupid, I-think-I’m-invincible kind of ideas that only lead to pain and muscle spasms.  I can probably look forward to a headache later as a “special” bonus.

I had my annual woman’s appointment today.  Thankfully, the Physician’s Assistant was very experienced, friendly and forgetful.  Despite having my chart, with my age and number of children I’ve had, and despite asking me if I have children and saying that she was almost twice my age, she was very gentle with me.  Normally, these exams are very painful for me, but today was not too bad.  Having expected to be in a horrible mood after the groping by a stranger that I pay them to do to me, I agreed to have lunch with the hubby so he could cheer me up.  Then I thought, “I really need a couple of things from the grocery store”.  Why I even attempted this is beyond me.  Clearly, I needed the reminder of how I’m not the old me.  Hopefully, my helpful tips with not only help you all, but will also stick in my mind, so I don’t attempt the self-torture I subjected myself to today, again.

  • Don’t drive yourself to the store.  Especially if you are in a flare or if you are doing other errands on the same trip.  If you do have to drive yourself, make sure you conserve energy and park as close as possible to the entrance.
  • Slow and steady wins the race.  Do not walk fast at any time.  I get into this mode, especially when I have a list and I end up hurting before I’m to the first item.
  • Plan on your trip taking twice as much time as you think it will.
  • When you are by the restroom, use it.  If you have children with you, make them use it too.
  • Make a good list.  Put items that you know are close together in the store, next to each other on the list.
  • Ignore the starers.  People always stare at the person limping through the store.  Or, if you really want to freak them out, say “Hello”.  Most rude starers get flustered by this.
  • Walk to one side of the isle.  This allows you to walk at your pace and gives the “tailgaters” a chance to pass you.
  • Ask for help if you need it.  Don’t attempt any heavy lifting.  If you wouldn’t lift it at home, find another shopper or a store employee to help you.
  • When u-turning your cart, walk to the end and pull your cart around.  This is much easier than trying to push it that way.
  • Groceries don’t mind being left in the bags.  When you get home, if you are too exhausted or in to much pain, only bring in the things that can’t sit in your car.  Leave them in their bags, shove them in the refrigerator and the freezer and rest for a while.
  • Remember that even the motorized carts require you to have your arms elevated to push the buttons and you have to stand up to get most items.  The backs are so far back from the handles, you may end up hunched over, causing back pain, shoulder pain, neck pain and headaches.  I have found that using the carts takes just as much energy and makes my muscles hurt worse than walking through the store.  At least when I’m pushing the cart, I can use it as a walker.  I also didn’t like the looks I got when I was in the cart.  I was always so tense because I felt people judging me and because I am not coordinated and would run into shelves and my children and I had many near misses with the people who automatically ignore someone in a motorized chair.
  • Stay alert in the parking lot.  Today, when I was taking my cart back, I was almost hit by a car.  Not my fault.  The girl backing up didn’t even look before she started out of the spot.

I am sure there are many other tips for grocery shopping successfully, but I’m almost dozing off as I type this.  Maybe I’ll add more later or if there are things you do, please comment.

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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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Why am I panicking?

Feeling lost today. The kids are back in school and my littlest is in preschool. What should I be doing? Now that I only have to worry about me for three days of my week, I feel like I’m not sure where to start or what to do. I’m almost panicking because I’m realizing that it is almost one o’clock in the afternoon and I haven’t done anything. In not wanting to do too much, since I need to be able to drive this afternoon to pick up the kids, I’ve ended up doing nothing! I’m freaking out about hearing people outside and wondering “What if someone rings my doorbell?” Seriously. This is what I’m freaking out about. I suddenly have all this time and I know that there are things I should be doing. What a waste of my time.

Still feel like I’m going to hyperventilate!  I thought about not posting this, but since my blog is my support group it would probably help if someone (anyone?) could tell me I’m not losing my mind.

All the things I could’ve worked on today but didn’t:

Laundry-I have 4 loads to fold.

Dishes-my stove top is covered in pans because while my kids can load and un-load, me and the hubby are responsible for the heavy duty stuff.

Sewing a border on all my napkins I cut earlier this year but haven’t yet sewn the border so they unravel a little more every time I wash them.  I also have about 10 things on my “Want to sew list” but every time I start one it isn’t 10 minutes before my back, hands or arms are killing me.  I use a machine so how hard could it be.

Picking up all the crap that has been strewn from one end of my house to the other by my children.

Mopping the floor.

Walking the dog.

Going to walk in the warm pool.

Take a shower.

Do my “Yoga for Aches and Pains”  DVD I got from the library.

These are all things that I would like to accomplish but every single one of them seems insurmountable because every time I start one, I either don’t have enough energy to finish or my pain is too great to finish.

I can do it!  Even if I can’t do it, I need to just get up off my you-know-what and do it.  I can do eet!  Even if I don’t do that much, it is better than doing nothing.

Thanks for listening.  I always feel better when I talk to you all.  Maybe next time I’ll write about what is really bothering me.

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Gluten-free for me?

I went to my acupuncturist yesterday and she asked me to try going gluten-free for a month.  She also wants me to cut out as many refined sugars as I can.  The main reason I haven’t tried this before has been the cost.  I can’t justify spending so much just on food for me.  I also don’t want to get my hopes up again, just to have them dashed.  That probably sounds silly but with every new thing a doctor has had me try or  family has told me to try and every failure, I feel more and more discouraged.  I feel like I am at a place of acceptance of my situation and it is scary for me to open my mind to a new treatment.  I’m not sure that will make sense to anyone and I’m not sure if I’m explaining it correctly.  I’m in a flare right now, so the fog is pretty thick.  Even though I slept well last night and remember dreaming, I went back to bed after waking and eating breakfast and I feel like I’m spacing-out all the time.

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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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