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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Winning!

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

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

 

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And It Hurt Man! Really Bad!

This is to all my Fibro-fabulouso, Chronically Fatigued Sexy-beast ladies and gents. And everyone else I know. At the end of this video, The Kid President asks you to send this to the people who inspire you. You all inspire me. I try to follow everyone who follows me and reading your blogs and knowing I’m not alone has helped me more than anything else. Every like, every comment, every time I look at my stats and see all of you take the time out of your day to visit my little corner of the world, I get inspired to do more, to be more. Here’s to you, for fighting the fight, like a BOSS!

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Love

Emma with four kitties!

Emma with four kitties!

The kids with Squishy Grandma.

The kids with Squishy Grandma.

Katie with one kitty, holding it baby style.

Katie with one kitty, holding it baby style.

Yesterday, we visited Squishy Grandma (My husband’s Grandma). Aunt Pauline was there. I cannot express how much I love these two women. They were some of the first of Cam’s extended family for me to meet. They greeted me with hugs and told me that they loved me already, just from what he had told them about me. When I was pregnant with Aden, Aunt Pauline and Squishy Grandma gave me great advice and always made me feel like I was beautiful. Side note: These ladies have been known to squeeze a pregnant ladies breast, pat a belly (pregnant or not, just had it happen yesterday) or smack a butt. LOL! During our visit yesterday, there were so many great conversations that I had a migraine last night from the pain in my face. Too much talking and too much smiling, but it was worth it. We talked about how our kids know when they’re in trouble. Mine was when I use my deep-mom-growl voice and Squishy’s was when she cursed at them. Aden got the remote (a huge honor is Squishy’s house) and turned it to Chiller. The movie he was watching was on a scene where two people were making out:

Me: Aden! What are you watching?!
Aden: Humans vs Zombies.
Squishy: Aden! What are you watching?!
Aunt Pauline: Aden! What are you watching?! Is this a sex movie? Are you becoming a perdvert? (That’s how she said it. LOL.) Why are you watching a sex movie?

At this point, Aden is bright red. He growls, yells “Fine! I’ll change it!” and flips to “Duck Dynasty”. LOLOLOLOL!!! So funny!

We talked about my illness and what I’m doing to feel better mentally. We talked about blogging and about how much fun getting to stay home with kids is. Aunt Pauline has Fibromyalgia and Lupus so she is a great support system. I hurt physically when I left but in my heart, I felt renewed.  And we played with kitties and pet her dogs.  Is there anything more fun than that?

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I Forgot

I had a kick-ass-and-take-names kind of day today. I drove my kids, by myself, to a Birthday party an hour and a half away. I helped my three-year-old in the shallow end of the pool for over an hour. Thankfully, the pool was indoor and warm. It was like having a long soak after that long drive. I was able to enjoy myself at the party, even with the pain and fatigue. Kid parties may seem boring or like too much kid-time, but kids are just my speed. I avoid all the adult drama and hang with the kids most of the time. They are always positive, looking for the bright-side and magnets for fun and silliness. My older niece’s showed me some funny videos with interesting dancing and the exchange of laughter was a memory I will cherish.

I even made the drive home. I can’t say what kind of shape I’ll be in tomorrow though. It is almost midnight and I’ve been up since 7 am but I drank coffee on the way home so now I’m exhausted but wide awake. I hurt, of course, but I’ve got heating pads rotating from my legs to my neck, shoulders and back. I started writing this post in my head on the drive home, but had to force my thoughts to singing along to the radio so I wouldn’t fall asleep. It is killing me because I had a specific message I wanted to convey, but now I can’t remember what it was. I didn’t even realize that I was starting to go into the little creative space in my mind until my eleven year old reminded me to sing along. I told him to throw something at me if I wasn’t singing along to the radio because that meant I was asleep.

This is driving me insane now. I feel like there is something to get off my chest, but I can’t remember what it is! I don’t think I’ll be able to sleep until I think of it. It had to do with anxiety. I was thinking of the anxiety that I experienced in the days leading up to this party. Now I remember. The relief is short-lived. I won’t be okay until I get this out.

I was singing along to Macklemore and Ryan Lewis, featuring Mary Lambert, “Same Love”, and it hit me. Whenever I have any event, party, anything really, to go to, I immediately begin over-thinking. I could even be thinking of all the fun, positive things that could happen. Eventually though, my mind turns dark. I might imagine someone being mean to me or my kids and the ensuing drama, stress and conflict. I might imagine a misunderstanding that gets blown out of proportion or some other situation where I am in conflict with someone who doesn’t know me.

While listening to this song, I thought back to all the negative places my brain went when confronted with my attending a children’s party at a public pool. Add the stress of finding out the night before that I’d be making a drive I haven’t made in two years, and I was a mess. In one of those made up situations in my mind, a simple misunderstanding in the pool between myself and another mother, blows up. This kept creeping into my thoughts all week. At the actual party, not the one in my mind, I did have an interaction with another Mom and it was nothing like I had imagined. It was actually kind of beautiful. If you saw me and this other Mother, side by side, you would think that we had nothing in common but that we were Mothers. We never talked to each other so I’ll never know. Our babies communicated first, with eye-contact and a smile and then so did we. I feel like we so often judge each other based on what we see and that is sad. Maybe that will be a new goal for me. More eye-contact and smiles and less judging. I can do that.

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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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Me and the Hubby

Me and the Hubby

June 24, 2013 will be lucky Anniversary number 13.

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My Hubby Is Superman

I just have to do a post about the love of my life.  He is so sweet, caring, loving and awesome.  Let’s not forget sexy, smart, handsome and sexy.  Through this whole explosion of suckiness with maximum sucktitude that is known as Fibromyalgia and Chronic Fatigue Syndrome, he has been my rock.  He listens to me whine, groan, moan and bitch about how much I hurt or how tired I am.  He works 40 hours a week, gets the kids ready in the morning and takes them to school.  He helps me with housework when I am in a flare and sometimes even when I’m not.  He helps the kids with their homework and plays with them every night.  He takes me to doctor appointments and when he can’t, he drives me an hour and a half to my Mom’s, after working 8 hours, so she can take me.  He deals with all the bills, does all the grocery shopping and handles everything else you can think of.

Last month, we had a water pipe freeze in the basement where our kids rooms are.  He cleaned up all the mess he could, ripped out carpet, moved all the kids crap plus the furniture, dealt with the insurance company and all the repair people.  I pushed a steam cleaner for a little bit and then laid on the couch for the rest of the day with painful spasms and fatigue.  My hubby has back and neck problems but he still does all this because he knows I can’t.  This weekend, he spent all his free time painting my daughter’s room.  Yesterday, he worked 8 hours and then spent an hour at my daughter’s preschool cleaning because we can’t afford her tuition this month.  Then he came home, ate and began moving mattresses and bed frames upstairs so we could get carpet today.  He shoveled the walk from several inches of snow this weekend and finished getting the basement ready for carpet.  He didn’t sit down till after 9 pm.

Babe, you are awesome.  You are the best father and husband and I just want you to know how much I love and appreciate you.

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Oh Happy Day!!!

Even though I had a ton of pain this morning I am now walking on clouds!!! Not just because I am listening to my dance music that I love so much or because listening to “Yoga Nidra” by James Jewell got me extra, pain-free sleep but because I weighed myself and even with clothes on I weighed 170lbs!!! Sorry for all the exclamation points but I am just so happy. Hopefully this lasts. I haven’t weighed myself in a couple weeks but my daughter told me two days ago that I looked like I was loosing weight and I realized yesterday that my tummy wasn’t quite so big so I decided to chance it and oh yeah, my face is thinner for a reason!!! I love you all!!! The changes I’ve made in the last month besides being gluten free include starting “Fibro Response”, a multivitamin that rocks and lowering my Lyrica to 300mg a day from 450mg and last but not least, I’ve been taking thyroid medication. I see Dr. Eckstein in Boulder, CO and he showed me a list of symptoms from low thyroid and I had almost every single one. Even though my blood tests showed normal, the symptoms matched. I am not a doctor and I can’t even begin to give medical advice but if you are not getting results from your current doctor, don’t give up hope! I still can’t get a thing done in the morning and tire too easily as well as experience pain, but there are ways of dealing. Don’t play the ostrich, be the lion. Tell your doctor what you expect and if they can’t be positive for you or offer you any kind of support besides a shrug of their shoulders, don’t take that! They work for us!
I’ll step off my soap-box now and say it again, I love you all!!! We can do it! If you are dragging your feet on meditation or deep breathing (yoga without the crazy western-style stretching), I beg of you to just try it. Yes, I did spend my morning on the couch, but I was concentrating on my breath not my pain.

PS: Google Chrome is trying to tell me that positivity is not a word. What’s up with that?

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