Fibronaut At Home

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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We Got This Wednesday

  • I finished my Father-In-Law’s Elvis curtains.  Shhh.  We’re hanging them tonight, so don’t anybody tell him.  I’d show you what they look like, but my camera is kaput.

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  • I organized the bookshelves in the living room and put pictures we had taken in January in frames.

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  • I finished patching my daughters jeans.  Ditto with the kaput camera on these too.
  • I found Emma a Disney Rapunzel dress at Goodwill for $4.  I had to hand sew one hole, but Emma is now ready for Halloween.  I love poppin’ tags!

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  • I was able to drive to my son’s cross-country meet and cheer him on.

 

Now it is your turn.  Comment, blog or just reflect with yourself on all your accomplishments from the previous week.  No judgments.  No thinking of what you didn’t do or how what you did made you hurt or how long it took you to do it.  Just think about the triumphs, the smiles and the happy-dances.

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Total Panic Mode

It is nearing the one month mark since I was denied SSDI.  I am entering panic mode.  My hubby has been bugging me about contacting an attorney and updating my explanation of my difficulties.  Just writing about it has my stomach in knots.  My breathing is shallow, my stomach has butterflies and my teeth are clenched.  Last night, he started to talk to me about what he wanted me to work on and I had to cut him off.  I told him to make me a list of what he wanted me to do.  I could not deal with any of it.  I put on my headphones, listened to calming music and escaped into the book I’m reading until I couldn’t keep my eyes open.  Then I went to bed and kept repeating “You can’t do anything about it tonight. Deal with it tomorrow.”  This allowed me to get to sleep last night.  Not sure why I decided to post about this when it is bringing me back to this anxious space.  The anxiety just compounds until I’m a nervous wreck, barking at my kids and in pain from all the tension.  I meet with the attorney next week.  I cannot be a basket case until then.

This is why I know going back to work is not a possibility for me.  I cannot handle stress.  I go into ostrich mode, where I just want to bury my head in the sand until the coast is clear.  Add to that the pain and fatigue and I wouldn’t be able to function.  Since the denial, I’ve considered the possibility of working from home, just to bring in a little income.  I love to sew.  Why not turn that love into something profitable.  So I checked out books from the library on starting your own Etsy shop and I can’t even get past the first chapter.  I become overwhelmed by all the what-ifs.  I know that just getting started is going to be a lot of work.  My hubby starts questioning me about certain aspects of selling online and I freak out.  I know he just wants me to be aware of all the work my idea will take but it feels like discouragement.

So, I feel like I should be doing more, but every time I try, my doubts surface and I give up.

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Light a Candle

On my Facebook news feed today, there was a quote that really caught my attention: “It is better to light a candle than to curse the darkness.” The meme on Facebook attributed this quote to Eleanor Roosevelt, but a quick Bing search attributed several other sources, including JFK, Chinese proverb and others. I don’t know who to attribute it to, but I like it. After my post the other day that started off positive and upbeat and devolved into a mini anxiety attack, I was feeling pretty disgusted with myself. I made a conscious decision to get up off my behind and do something more productive than whine. Not an easy task when you are tired and hurting but a necessary one. I have to stop focusing on what I can’t do and start being grateful for all that I am doing. My three-year-old was at home, so we went outside to enjoy the beautiful weather. She suggested a walk. We took the dog and walked two blocks to check the mail. That was just the motivation I needed. When we got home, we rested, re-hydrated and rested some more. After picking up the older two from school later in the afternoon, I worked on my garden. I was absolutely exhausted afterwards, but mentally I was so much better. My day started out with so much regret and guilt and ended beautifully. Two years ago, I was in my recliner all day long. I was afraid of my body. I wasn’t driving at all. I couldn’t laugh, rarely smiled and had regular thoughts of suicide and self-harm. I was on medications that were giving me more side effects than relief. I felt every glance my way, took that energy in as negative energy and assumed every opinion towards me was hateful. I had little compassion for myself. I have grown so much since then. I am off of those medications that were hurting more than helping. I can drive. I can take care of myself and my kids. I can do housework. I have a hobby I love. I have a loving, understanding family. I am up and I am moving most days. I can acknowledge the pain and fatigue without letting them take over. I have lost 30 pounds. I can wear my size 12 shorts. I can laugh and smile and enjoy myself. Will I hurt or be fatigued in the next second/minute/hour? Probably. I can’t afford to let that stop me. Finding a balance with fibromyalgia and chronic fatigue syndrome is about taking advantage of every moment. If I start feeling OK early in the day, I don’t look at the clock and think “It’s only nine am. I better sit here for another hour or two before I attempt anything”. Instead, I get up and give myself the opportunity to do something other than sit. If there is any pain or fatigue, I take it slower but I keep going. Since getting my garden half planted two days ago, I’ve been getting off the couch before 10 am so I can get it watered before the heat of the day hits. Then I rest. Then I do something else. Then I rest. And that is okay. Yesterday, while sorting laundry, I listened to upbeat music while I sorted, swaying and moving my body to keep my muscles loose. I didn’t get a headache last night so it must have worked. Today, I am trying the same thing while I fold. I have the shades open to let in the sunlight. I have to stop being afraid and what-ifing every situation to death. We went to a Birthday party for my nephew a couple weeks ago. My Mother-in-law said, “Glad you could make it.” I did a double take and I’m sure I looked at her funny. I don’t even remember what I said but that was such a nice thing to say. So much better than “How are you?” because I didn’t have to scramble for an answer to an impossible question for me. I hope I said I was glad I could come because I really was. No more focusing on the darkness. I’m lighting a candle.

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Happy Mother’s Day/Fibromyalgia Awareness Day

My Mother’s Day weekend was pretty awesome.  I did some sewing, went to Goodwill (a thrift store) for their half-off everything sale and my hubby and children got my first garden plot ready.  We went to my Mom’s for dinner yesterday, and thanks to a caramel mocha iced latte, the fatigue didn’t hit me until we were thinking of leaving.  I dozed the entire hour and a half drive home.  I wore purple, as did my Mom and my three-year-old.  My nine-year-old started out in purple but five outfit changes later, the purple didn’t last.  She did paint her NAILS purple with purple f’ s.  My eleven-year-old son owns no purple and the hubby wore his purple shirt the day before.  Maybe if we started a tradition, somewhat like St. Patrick’s Day, where you get a slap to the back of the head for not wearing purple on Fibromyalgia Awareness Day, more people would go along with it.  Maybe not.  Something less violent, perhaps?  That would probably hurt us worse than it would hurt them.

I have to tell you about my trip to Goodwill.  I had purple and butterflies on the brain, for obvious reasons.  I always check out the sheets because fibromyalgia has forced me to do more re-fashioning than from-scratch sewing.  Sheets allow me to make skirts that already have a hem, so I just have to do side seams and elastic.  Easy-peasy.  I found a sheet set that is purple with butterflies on it.  The angels sang in my head when I saw them.  I was thinking of making infinity scarves for all my fibromyalgia friends.  When I got them home, I studied them more closely, and realized they were more worn than I originally thought, so I’m now thinking maybe bags instead of scarves.

I also always check the men’s shirts because men’s Hawaiian shirts make great skirts.  The material is soft, the colors are bright and all I have to do is chop and sew down the sides and top to fit my waist.  I found some Hawaiian shirts, but my really exciting find was a t-shirt.  It is blue, but it has a Spartan stabbing through a lavender ribbon on the front with “Warrior” underneath.  The back has a pretty design and it says “Fighting for a cure”, also in lavender.  My hubby thinks it was meant for cancer.  Well, guess what?  Now a fibromyalgia sufferer owns it, so it’s for fibro.  I’m going to refashion it into a tank top for summer and maybe paint the ribbon a darker purple.

When we returned from our shopping trip, I realized that my planned outfit of purple tank top and butterfly t-shirt was dirty.  Instead of washing those, which would have been a lot easier, I decided to make myself a quick skirt.  It didn’t take me that long to do a circle skirt with a simple waistband.  The best part was that I could make this without a pattern.  Pattern sewing is nearly impossible for me because cutting out the pattern, then pinning the pattern on the fabric, then cutting out the pattern, then following the pattern-maker’s instructions, is just too much time with little reward.  I was really glad that the next day was Mother’s Day because I needed the rest badly after that undertaking.

Besides getting the garden ready for planting, my daughter loaded and unloaded the dishwasher and swept and mopped the kitchen floor.  I haven’t mopped in weeks, so this was quite the task for my skinny little nine-year-old.  In years past, I would’ve probably hinted that I didn’t want to wash dishes on Mother’s Day and my hubby would’ve told me not to worry about it and would’ve made me breakfast, making a huge mess.  Then, the day after Mother’s Day, I would’ve been cleaning the dishes and the rest of the kitchen myself.  Not that I wouldn’t appreciate the gesture, but it used to drive me crazy.  It shows how much my family has learned and adapted since my diagnosis.  I love them to pieces and I know I’m so fortunate to have such understanding people in my life.

Fibromyalgia Awareness Day took a back burner to Mother’s Day for me.  It was more important for me to spend time with my family and be able to enjoy all their hard work for me and bask in the love of my family.  I ended the day with pain, depression and fatigue.  I felt guilty that I hadn’t blogged.  All the activity of the weekend caught up with me.  It hurt to move, and my skin was overly sensitive.  Today, I’m feeling overwhelmed because I have my garden ready to go, but I hurt still and I don’t know if I’ll have the energy to plant seeds.  There is laundry to do.  It’s a beautiful day, but I’m still on the couch.  I’m not sure how blogging turned into this massive freak out.  Blogging is supposed to help me, not make me more anxious.

Excuse me while I talk myself through this.  It is not quite eleven in the morning.  If you don’t get things planted today, that’s okay.  If you don’t get laundry started, that’s okay.  Relax and breathe.  Turn your relaxing music back on.  Breathe.  If you felt well enough to do something else, you’d be doing it.  Be kind to yourself.  Open the shades, let in the sun.  Breathe.  Stop gritting your teeth.  Relax.

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Do Something You Love Today

Yes, we hurt.  Yes, we are tired.  We want awareness for all invisible illnesses now.  We want to be able to earn a living, spend time with our loved ones and do everything we used to enjoy before pain and fatigue took over our lives.   Today, just for a little while, let’s pretend.  Let’s pretend we don’t hurt.  Let’s pretend we aren’t tired.  Instead of bemoaning our current existence, let’s imagine that everything is fan-freaking-tastic.  Ignore the housework, ignore the bills, ignore the screaming/whining/fighting kids*, ignore anything that would normally have you pulling your hair out.  *Check in with the kids from time to time, just to be sure they are all still alive and accounted for.  Today, we are all going to take a little me-time.

I am listening to classical music, reading a book and still in my pajamas.  I’m contemplating getting up and getting in the shower, but after that, I have no plans to do any housework.  The dishwasher needs to be loaded and there are three loads of laundry to fold.  The toilet is disgusting and the bath tub has a very unattractive ring.  Today is the first day in over a week that I can see the garden and it is supposed to be over 50°F.  All of the things I “need” to do will be here tomorrow.

What I really need is a day to me.  I need a day without any guilt over what I have or haven’t done, said, thought or felt.  I am clearing my mind of all that, focusing on the music playing and the story I’m reading (Thrown By A Curve by Jaci Burton) and letting everything else go.  After I get the kids home from school, I’m going to work on an apron I’m sewing and that is it.  When my hubby gets home from work, I will NOT immediately assume that he sees the house exactly as he left it this morning and thinks I’m a lazy ass and wonders what I did all day.  I’m going to greet him with a kiss and a smile.  We’ve been married 13 years.  He knows me and he still loves me.  If he didn’t, he wouldn’t still be here.  And who knows?  With all the resting and ignoring of life’s problems I’m doing today, the bedroom door might end up locked while we’re taking a “nap” (wink, wink).  I might as well add doing-the-one-I-love to the doing-something-I-love list.

Shower, listen to music, read, sew, love.  How will you take your me-time?

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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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Insomnia Purge

It’s 2 o’clock in the morning and I can’t sleep.  Here is a list of why:

  1. I over did it today popping tags at Goodwill and a couple other thrift stores.  There was resting in between but it’s difficult to rest while riding in the car.
  2. The hamster in my brain won’t get off his wheel.  Currently, the loop consists of the ridiculous amount of sewing projects in my brain, all the cool gardening ideas I saw on Pinterest earlier, the letter we got from my kid’s school warning us of the amount of tardies my kids have had and how three tardies equal one absence and they are required to attend a certain number of hours, all our medical bills, and whether Social Security is going to approve me for disability or not.  I really need to get a new hamster in my brain because this one is keeps bringing up things that I’ll never have the energy for or that I can’t change.  I would love to sew or garden all day but I don’t have the energy and those activities cause too much pain.  I can’t drive in the morning so other than nagging my hubby to get up earlier, which I don’t have the energy for in he morning anyway, I just have to let my hubby  that.  I can’t do anything about the medical bills and Social Security so why am I wasting my time worrying about them?
  3. When I tried to go to sleep at one o’clock, the second time I’d laid down, the hubby wouldn’t leave me alone, which made me really angry, contributing to my inability to sleep.  I try to give him what he needs, even when I’d much rather be sleeping.  Maybe my next advertisement I do on the blog will be for a Sister Wife
  4. My three-year-old can’t sleep either because the lucky girl took two naps today.

There could be more but I’m typing on my daughter’s Kindle Fire and it keeps deleting random words and letters.  I’m about ready to throw this thing.

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