Fibronaut At Home

Staying in the Zone

I haven’t posted as much as I’ve wanted to over the last month.  I’ve been guilt tripping myself whenever I think about my blog, and that was not the purpose of my blog.  I’ve had to revisit why I decided to start a blog about my fibro and chronic fatigue.  As a result, I feel less stressed about whether I’m posting “enough” or not.  I’ve also made a goal to post more on my sewing blog, which is more a “Look what I can do” blog, than anything else.  I get so much happiness and fulfillment in cataloging my creative side.  For a while, I was considering dumping on or the other of my blogs, but I’ve since decided to create a balance between the two.  It’s kind of like feeling guilty for spending more time with one of my children.  If I give them equal time, everyone will be happy.

I’ve really been focusing on my posture and my breathing lately.  When I go to pick up my kids, I put my seat closer to the wheel and in a more upright position.  This helps my arms because I’m stretching them less and it makes me feel more alert and less like I’m so comfortable I just might nod off while driving.  If I find myself zoning out, I turn up the radio and force myself to check my mirrors.  I  check my posture and if I’m clenching the steering wheel or my teeth, I loosen my body and take some deep breaths.  If one of my legs or arms is hurting, I try to give that limb a break.  I keep them in position, in case I need to use them, but I relax them as much as possible.  A lot of my pain comes from clenching my muscles in response to my environment.

We have a new computer, which has it’s advantages over my old laptop.  My old laptop has charging problems and that created another level of stress.  It makes this horrible noise when the battery is running low, then we have to go through this ritual of unplugging the charging cord and manipulating it so that the laptop charges.  The new computer is set up at the kitchen table, which forces me to get off the couch and sit in a normal chair.  There is a lot of light in our kitchen and I get my daily dose of sunshine, which is so important.  I also practice good posture while browsing the internet and focus on keeping my shoulders lowered and my breathing even.  If I’m clenching my teeth, I open my mouth and wiggle my neck to relax those muscles.

I killed my third heating pad.  I’ve decided to give up on that.  A hot washcloth in a plastic bag, with a towel around it works just as well and there is no fire hazard there.  I’ve found a simple pattern for making a rice filled heating pad that you microwave for 10-15 seconds and I’ve decided I’m going to make a couple of those.

My Social Security hearing is next month.  STRESS!  I have done everything I can do to prepare for this event, so I’m doing my best to just let it go.  Helping my doctor fill out the questionnaire made me feel hopeful.  My attorney told me that the judge I have relies heavily on what my doctor says, and I’m confident that my doctor understands my condition and abilities and is able to convey the difficulties I face on a daily basis.  That is all that I wanted in a doctor.  Understanding.

I’ve really been working on being kinder to myself.  Today, for instance, has been challenging.  There is a storm front blowing through and I didn’t sleep well last night.  I’m on my second cup of coffee, which usually stresses me out.  I feel like, if I have to drink a second travel mug of coffee, I’ve somehow failed for the day.  I have acknowledged those feelings and then told myself, “who cares”.  And then I breathe and I’m good.  Accept it and move on.  I know from experience that on days like today, a shower and picking the kids up from school may be all I accomplish.  That is okay.  Actually, if you count sitting upright and typing this, I’ve accomplished more that I normally would on a bad day.

Off to the shower, then gentle thoughts, maybe a nap, and then picking up kids.  I can do this.

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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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Here We Go

My 6th Grader

My 6th Grader

My son started 6th Grade today.  I decided that I was going to try to take my kids to school this year.  My hubby doesn’t have to be to work until 9 am right now.  Last year, he didn’t have to be to work until 8:30 am and the kids were late all the time.  We open-enroll them so the school district has to approve the kids every year and they are strict on attendance and grades.  Every three tardies is one absence.  I’m tired of worrying about them getting in trouble for tardies.  This morning went well.  I made sure I took my meds, ate a little something and had coffee before we left.  I still had to make sure I concentrate on the road.  Even small distractions are dangerous for me in the morning.  I  was distracted by a mosquito and freaked out the kids when I was trying to kill it.  I had to slam on my brakes when an old guy didn’t have his blinker on and turned in front of me when I thought he was going straight.  I started to go into the gutter when I was singing along to the radio and looking at the corn fields.  Tomorrow will be the real test when I have three kids to drop off and the traffic is tripled.

I’m not as anxious about him starting sixth grade.  I was excited for him this morning and I didn’t cry when I dropped him off.  It was a near thing.  I’m dealing with PMS so that is consuming most of my energy.  I have to do laundry today so that might affect tomorrow as well.  Wish me luck!

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Who’s Foolin’ Who?

Happy April Fool’s Day.  How have I made a fool of myself?  Let me count the ways.

My nieces came to visit and I painted all their nails.  I can barely paint my own nails, so why did I think I could do seven little girls nails and not suffer the consequences?  After the third little girl’s base coat, my two eldest nieces noticed my hands shaking.  By the time I was done, my shoulder’s ached, my neck was spasming and my hands had sharp pains running through them.  That continued through the next day and it wasn’t until the following day that I could finally paint my own.

I let my kids get bunnies actually thinking that they would be the ones taking care of them.  So far, only my nine-year-old daughter has been helping to feed and water them.  I don’t even want to think about cleaning up their poop.  I’ll be lucky if the kids make it through one cage cleaning.

Abigail, Honey Bunny and Thumper

Abigail, Honey Bunny and Thumper

Since my hubby was not behind the bunny idea, I knew that he’d really let me hear it if I asked him to build a roof for the bunny cage.  I decided to do it myself.  I took measurements, made a “plan” and had three little helpers.  How hard could it be?  Problem #1:  I haven’t built anything since shop class in middle school and all I remember making is a metal hook and a leather key-chain.  Problem #2:  I have never used a circular saw in my life, so I went with the hand saw.  Problem #3:  I have Fibromyalgia and Chronic Fatigue Syndrome.  I took breaks and I had the children for the heavy lifting but they couldn’t use the saw so that portion of the program was all me.  Let’s just say that the size, shape and “plan” for a lean-to became four pieces of wood, staple-gunned together to make a kind-of roof.  That was three days ago.  That evening every muscle in my body was screaming and I was so exhausted that I felt nauseous   The next day, I had muscle spasms on my muscle spasms, could barely walk or sit.  I sat, just not comfortably.  Yesterday, I started the trip to my Mom’s with a migraine, I rested all the way there and took a nap once we arrived and it hurt to lift my fork at Easter dinner.

With all the bunny drama, you’d think I’ve been taking it easy.  There is a little problem with that. I had cut some fabric earlier in the week to make myself a shirt to wear on Easter.  I had yet to sew my shirt when our family grew by three bunnies, so instead of taking it easy on Easter Eve, I was sewing.  I was basically sewing two rectangles together with a waistband but even the small movements required for pinning and using the sewing machine made my arms and legs hurt.  My Dad told me I should sell clothes I make on the internet.  The things that I sew take 10 times the effort and time that they take a healthy person and the only reason it is worth it to sew these things is the happiness in brings me and my kids.

Not yet sure if it was worth all the pain it caused to create.

Not yet sure if it was worth all the pain it caused to create.

I won tickets from a radio station to Disney on Ice.  I needed to go to Denver to pick up the tickets on a weekday.  I actually tried to make plans to drive to my Mom’s house, an hour and a half away, on my own.  The last time I tried to drive longer than 20-30 minutes, I was in pain and fatigued for four days afterward.  After thinking about it, I cancelled those plans and made new ones that didn’t involve me doing any driving.

Yesterday, I had a joy-thief, one of those people who isn’t happy unless they are making everyone else miserable, say some nasty things about my wonderful hubby.  She had me so mad that I actually rinsed everyone’s plates at Easter dinner and helped load the dishwasher.  I know she’s a joy-thief and I still let her get to me.  I hope she reads this so she knows I’m on to her and her bull that she tries to pull every holiday.

As if me fooling myself isn’t bad enough, my three-year-old just locked me outside.  I had to ring the doorbell a bunch and yell at the top of my lungs to get her to let me in.  She tried it again when we picked up her older siblings from school.  Luckily, they leave the keys in the door so I was able to let myself back in.

As usual, I’m sure I could think of about a hundred other examples of ways in which I’ve fooled myself but I have trouble remembering anything that happened beyond last week.  No joke here.  All of these ridiculous shenanigans happened in the last week.  April Fool’s Day must be my favorite holiday.  I celebrate all year long.

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The Nice Weather Curse

Yesterday was the first day in the last couple weeks where we had nice weather.  I was up and about earlier than normal, feeling better than I have in months.  I think you know what’s coming.  I’m so behind on everything because we’ve had a couple snow storms come through and storms always wipe me out.  I started with dishes and loading the dishwasher.  Then I washed pans.  I swept the kitchen floor, moved the chairs out to the deck and ran the Mint a couple times so I wouldn’t have to mop.  Last week someone spilled blueberries in the crisper drawer so I washed that too.  I even emptied the dishwasher, which I usually save for the kids or for the next day.   By the afternoon I could barely move my arms.  I had to turn down the radio while driving so I could concentrate enough to stay on the road.  I could barely hold the wheel and my legs were having trouble pressing the gas and brake pedals.  Every single muscle hurt.  My hubby is sick and I had to go to the store for him.  I was in so much pain and walking so slow and I know the misery showed on my face.  I’m sure the checker thought the medicine was for me.  I took a hot bath and even that didn’t help.  I had two heating pads rotating from my feet to my knees to my hips to my hands to my arms to my shoulders to my back.  

Today I am no better.  I hurt my thumb twisting the bag of bread this morning.  I slept in but feel like I didn’t sleep at all.  I’m stiff and I hurt.  I have 4 hours before I have to pick up the kids but we need toilet paper and my hubby is still sick so that leaves me to go to the store.  It might be time to train the 11-year-old on running into the store for me.  I’ve only been awake two hours.  Is it too early to take a nap?

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Go Away Winter

I did not realize how lucky I’ve been that we’ve had a mild winter.  The storm blowing in right now has my muscle spasming so painfully.  It is not a quick spasm either.  They last for three or four seconds and then I get a couple seconds break before they spasm again.  I’m getting a headache too.  It probably does not help that I was so foolish on Monday.  I thought I’d try driving to my doctor’s appointment over an hour away.  Even with relaxing at stoplights, deep breathing and making sure I relaxed in between, I couldn’t make the drive home and was so exhausted that I slept all the way home.  Yesterday my legs hurt but today my muscles along my hips and my muscles along my shins are spasming.

I am so tired of being a burden to everyone.  My hubby has to take of work to take me to appointments or my Mom takes me but then my hubby still has to drive me an hour and a half to her house, so that is three hours of him driving after he’s worked all day.  Then after my appointment my Mom drives me home and then drives herself home which amounts to almost four hours of driving for her.  I wanted to be able to drive myself to my appointment, but obviously that isn’t going to happen.

Just tried to do laundry but that is going to have to wait another day.  Just typing this is making my finger muscles and arm muscles cramp.  Hope the hubby can cook dinner.  If not, the eleven-year-old will be making us frozen pizzas again.

Quick note on my doctor’s appointment, my blood work showed inflammation so he upped my Naproxen and told me to up my Baclofen before bed to help me sleep better.  He’s concerned but wants to see if the Naproxen helps.

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Driving

I feel like a failure.  I hate to say that, but I really wanted to be able to take my kids to lunch with their Daddy today, and I’m not because I hurt too bad and I know that I wouldn’t be able to drive that far and sit through lunch and then drive back.  Twenty miles doesn’t seem like it’s that far until you have muscle spasms in your legs that could potentially cause you to speed ahead when you mean to brake.  Or you have so much pain in your knees or hips or ankles that you are driving with one leg.  Suddenly you have a Fibro-fog brain fart that is so intense that when the light turns green, you rev your engine (Don’t worry.  You’re in park because you can’t hold your foot on the brake that long so you put it into park at every red light) instead of pressing your brake to take your car out of park.  Or your arms, hands or shoulders hurt so bad that you can barely grip the steering wheel, let alone turn it and even holding your arms up for that long of a drive, even if it is practically a straight shot and all you do with your arms is navigate a straight line and put the car in and out of park.  Or your neck muscles have such bad spasms that you have a headache and you can’t turn your head from side to side to even back out of your driveway.  Your feet hurt so bad that pressing the pedals feels like you’ve got tacks in your shoes.  Your Fibro-fogged brain is zoning out on the cows and the farm houses and the trees and whatever else catches your eye.  Distracted driving?  You bet.  Then somebody calls you or texts you.  You don’t answer, they become worried and they call again.  A month or so ago I was driving to a doctor’s appointment and my Dad kept calling me to make sure I was doing okay and I probably snapped at him and said something rude like “I can’t drive if you keep calling me.  Stop calling me!”

I know that it isn’t my fault that I have fibromyalgia or that I have all this pain but I hate disappointing my kids all the time.  Sometimes  I go along with whatever we’re doing even though I hurt, just so I have the experience.  Maybe I hurt, but I still get to witness all my family’s joy.  I’ve always been more of a spectator and I’ve never really had a problem with it.  For me, my driving is a safety issue.  I have to look at the broader view and if I already hurt, driving is not going to make that any better.  I think my kids understand because they didn’t seem too upset about not meeting Daddy for lunch but sometimes they say they’re okay and later, it all comes out.  Since I decided to blog about this, my legs have been under the heated blanket with a heating pad on my knees.  My legs feel better now (although I haven’t tried walking yet) but even though I have my arms propped up, my neck hurts and I’m getting painful spasms from my neck all the way down to my finger tips.  It’s a good thing I’m pretty much done here, because my body can’t handle one more minute.  Fibro-fighters unite!

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I Can Do Eet!!!

Do to unforeseen scheduling conflicts, I had to drive myself to my appointment with my pain specialist today.  This is a ginormous deal for me.  The trip takes about 45 minutes and includes driving on the interstate.  This is the farthest I’ve driven and the first time I’ve driven on the interstate in over a year.  I kept telling myself out loud, “you can do this” over and over when I felt myself tensing up or hyperventilating.  At the top of my lungs, I sang along to “Jack and Diane” by John Mellencamp, “Dream On” by Aerosmith, “Hella Good” by No Doubt and a couple other songs that I cannot, for the life of me, remember.  Despite the mini-concert, I arrived safely and a half an hour early for my appointment.  This was a good thing, as they do a UA (urine analysis) at every appointment.  Unfortunately, even though they got me right back for the UA, I forgot to tell my doctor’s front desk that I was done peeing in the cup and didn’t remember until a half an hour past my appointment time.  Do they not realize they are dealing with a fibronaut?  They’re lucky I remembered what I was supposed to do with that little plastic cup after I read the directions that are taped on the wall next to the toilet!  By the time I was finally called in to see the doctor I was exhausted and not looking forward to the drive home.  The pain in my shoulder was screaming at me that it was time for my muscle relaxer but I knew if I took it then, I’d be too tired for the drive home.  While my “driver” did arrive to “help” with my nearly-three-year-old, she cries every time he tells her anything, she won’t let him take her to the bathroom and she won’t stay in the waiting room with him.  I still had to drive us home, but at least (since when is atleast not a word Google Chrome?) there was someone following who could honk wildly if I drifted or swerved or something.  My nearly-three-year-old also got an impromptu lesson in peeing in a cup when she refused to stay in the waiting room with my “helper”.  That wasn’t an awkward experience at all (did the sarcasm come through?).  I realized on the way home that I didn’t have to take the interstate that morning after all.  With the stress of the trip to the doctor and the actual doctor visit over, I found a route that avoided the interstate completely.  Thanks to fibro-brain, I am unable to make last-minute decisions.  Thanks to our finances, I don’t have GPS or a smart phone.  Which means, if I don’t have time to get on my laptop before I leave and I have to drive on the fly, I take the first route that pops in my brain.  We made it home again safely and after picking up my other two from school, saying I hurt really, really badly is an understatement.  My pain specialist has allowed me to take 800 mgs of Ibuprofen three times a day if needed and I need it now.  My fingers, wrists, elbows, shoulders, knees, feet, toes and hips are killing me and I want a nap.  I’m under my heating blanket even though its’s 70 degrees outside.  I’m ending this now because I can’t type anymore.  Fibro Fighters Unite!

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