Category Archives: set your goals

I hurt so Badly. Why Can’t you be Kind?

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I hurt so Badly.  Why Can’t you be Kind?

Hello fellow warriors and friends.  I write this today as a result of the things that went on yesterday here at my house.  I live in the country, with grass and hills that make even a walk outside impossible.  I can go outside and sit on my porch (I am right now) but I can’t go anywhere else because I still don’t have my car.  I am miserable and getting worse by the day.  Yesterday I broke.

They are trying.  See, I live with men.  Two sons and a husband.  They are trying to get our other two vehicles on the road but because of how expensive that is in Pennsylvania it is taking months before we have the money.   So, I am stuck here.  I have been for years.

I don’t complain much.  According to my husband, I am some sort of crazy person who loses my shit all the time.  Same with my oldest son.  The things is, though, is that I do not.  Yesterday I cried because I am so sad and miserable and I have been trying to hide it from everyone, especially myself. The problem is that every time I have a feeling about something I am “crazy”.

I have been binge watching television.  That is about it.  I cruise around my laptop to facebook and reddit.  I have been desperately trying to distract myself, to no avail.  I still feel like a miserable lump.

Now, I know that there are a lot of women with fibro who have no one.  Or whose husbands are just horribly mean and abusive..  No way is my situation worse, or even as bad as that.  But the reality is, is that everyone has their own demons; they have their own struggle.  My struggle is that my husband has no compassion.

He admits that he has none.  When I was crying yesterday because I am so miserable, sore, and bored he got mad at me.  He gets angry when I cry.  He is never sweet, or caring.  In those dark moments I am on my own.  It would be easier if I didn’t know for a fact that he is capable of it.

This is not to say he doesn’t help in other ways.  He is wonderful.  Him and the boys do their own laundry, they help with dishes.  I know that for the most part I am blessed.  I make sure he knows I feel that way nearly every day.  I do NOT take that for granted.

But the dark times?  The really dark times, when I feel like I am slipping again.  When I am wondering if I still want to live at all?  In those moments I need him the most and he is just angry.  I told him he couldn’t understand what it is like to be housebound and that made him mad too.  He won’t help me because I said that.  That is the excuse this time.  Of course he can’t understand, he has NEVER been housebound.  I don’t understand what he does at work every day..  at all..  how can this be the reason your shutting me out and hurting me worse?

I don’t know if anyone will read this..  I just needed to get it out.  I am so sad and I want my husband to hug me when I cry..  how is that too much to ask?

So, right now I am broken.  I am desperately trying to pick up a craft or color, but then I just don’t..  I keep doing the same thing..  over and over.

I am really angry with myself.  I am angry at so many things.  I am pissed that I cannot walk around my own lawn.  I miss my old life sometimes.  These are the reasons that I am freaking out.  This is permanent and dammit, I am going to suffer and break and I need my partner to help me put myself back together again.

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Do you Remember What Normal Felt Like?

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Do you Remember What Normal Felt Like?

Last summer I was hanging out with some friends.  I told them a story about my dog.  See, a fly had landed on her head and she felt it, no matter how lightly it touched down.  Because the top of my head is so numb from fibro I was amazed at her ability to feel the fly.  After the telling, everyone looked at me really strangely.  They explained that they can feel flies on their heads as well.  I realized on that day that I was starting to forget what normal felt like.

To think that I didn’t appreciate every single second of having a healthy body.  I don’t remember a time that I could use my hands as they were meant to be used.  I don’t remember a time that I could take a walk in the woods without wanting to sit down and die.

I don’t remember what it was like to ride a bike, or walk for any real distance, or go up stairs.  I can’t go up the stairs in my friends house because they are spiral stairs and I get really dizzy when I try to use them.

Sometimes my arms and hands feel like there is a force coming out of the earth trying to pull me in using my arms.  They get so heavy and dense and throbby that I want to cry, but I carry on.

To think that I didn’t even think about it the last time I was able to run.  I don’t remember the last time I was able to dance.  I had a lot of lasts and I wasn’t even aware they were happening.

There are days that I break.  In the breaking I realize how fucking strong I am.  I remember that I can go in public and put on a happy face while my body feels like it is walking through hell and breaking apart.

I make a point to never show how much it hurts.  This can backfire, as most people think that I am “just fine” because I choose to have a positive attitude about my condition.

There are days that it wins.  There are days that I cry because the anguish and the pain is too much. I don’t like anyone to see me cry and I totally used to be The One That Cries.  Not that I don’t shed a rare tear over a show or a movie but real tears, those are rare and when it happens I am about as low as I get.

I have found that wishing for the past does not help me.  Feeling sorry for myself does not help me at all.  Concentrating on the pain, instead of staying positive is a huge mistake.  There are a million things trying to drag you down.  You have the choice whether you drown or swim as hard as you fucking can into a better mindset.

You absolutely can train your brain to deal with fibromyalgia.  So far, there are no medications to make you better.  From what I have found.. the right attitude and hard work on yourself can help make this condition something that just is..  most of the time.

 

Maybe we can’t remember what normal felt like, but I am pretty sure that is because we are supposed to get used to our new normal.

On Women and Magic

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On Women and Magic

This one is for the Ladies

Ladies!  I just thought of something interesting and I must share it right away.

So..  We know that when we spend a lot of time around other women that our menstrual cycles line up.  Mostly when this comes up women treat the fact like it is old hat.  Admittedly, it is old hat but I think we should look more closely.

Biological clocks, periods, and other women.  We biologically do this thing with women simply because of their proximity.  I realized what a miracle this is.  I was then immediately touched by what this should mean on many other levels.

We have been taught by the media that we should look a certain way.  It’s hard to be a confident woman in the present day US of A.  We are inundated by images constantly.  The real shitty part is that they are doing that on purpose.  If they make you hate yourself enough you will buy whatever they are selling.

If only I could help women see that our magic..  our power.. Comes from sisterhood and working closely together.  It is like a superpower that we can literally link our bodies,  I want women thinking about that instead of losing another 5 pounds or having the right hair cut…

It Isn’t about being prettier than all the other girls in the bathroom; it’s about seeing her soul and cooperating with it in the best way you can.  We have the power and the magic to accomplish so much…

…I just wish I could make you all SEE the magic too

You Only Have 18 Years to Raise Your Children. Don’t Waste Those Precious Moments Worried About a Condition

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You Only Have 18 Years to Raise Your Children.  Don’t Waste Those Precious Moments Worried About a Condition

Please read this one…  I felt a bit odd when I wrote it, like it wasn’t just me writing it… My Muse was strong for me today.

I realize that I have written before about kids and how fibro effects them.  As a mother, the amount of guilt I felt at the fact that I wasn’t healthy like the other moms crushed me.  I constantly tried to be more involved.  I constantly tried to do more with them.  I wanted to be the healthy mom that I thought my kids deserved.  My boys are 17 and 19 now and they have told me they didn’t mind it that I was sick.  They wanted me with them.  They want me in their life just like I am.  I’m working real hard on believing it.

With fibromyalgia I still managed to raise two amazing, successful men.  Did I cast a spell?  No.  I figured out that time spent together is more precious than anything else I can imagine.  I bet that right now you are thinking “yeah right! How did she find the time?”

See, quality time with your kids is simply time with your kids.  You don’t need to take them places or do expensive things with them.  Stay home.  Watch a movie together.  As long as you are togehter you are accomplishing your goal.

I remember ruined trips to fairs and carnivals and malls and restaurants..  well you get the idea.  I thought that to prove I was okay I needed to pretend that I was ok.  This is not only false, it is dangerous to your relationships.

Pretending you are ok will most certainly make you worse.  I just attempted suicide because I pretended that I was ok.  Obviously I wasn’t.

Kids are not stupid.  They can tell that something is wrong.  Be honest.  The only thing scarier than having a sick mom is having one that won’t tell you what it is.

There is a fine line that we ride every minute of every day.  Always wondering how much we should let them know.  Are we failing as mothers because we can’t run?  Are we failing as mothers because it is difficult for us to make plans?

My youngest son is a senior this year.  He was the drum major.  He was the lead in the play Les Miserables.  Jean Valjean.  He is in 4 AP classes and has a 4.0 GPA.  He does model UN.  He made it into county chorus.

My other son is the opposite of Ian.  Shelby is 19 and he works on cars.  He is very good at what he does and could write a book with what he knows about cars.  His eye for design is unparalleled and he is going to accomplish amazing things.  He is driven and focused and all this while dealing with ADD with no medication.  Amazing.

SEE?  They are both just fine.  My opinion?  Better than fine.  Oh yeah, and Ian?  He gets his Eagle Scout soon and created the STEM program that the scout camp uses to teach the kids science and technology when they come to camp.

I had three child development classes.  Your kids need you.  They don’t need toys or computers or cars, they need you.  It Doesn’t matter that there is a version of you that hurts and needs to rest because ultimately YOU are there.  It is only scary if you don’t explain what is going on.  They understand a lot more than you think.

My youngest graduates high school this year.  He is a super brainy genius and a lot of the Ivory league schools are after him.  Obviously, having a sick mom didn’t ruin his life; matter of fact I was able to be here with him every second that I can because I know that my time with him is ticking down.

My other kid does body and mechanical work on cars.  His eye for design is stunning and I see big things for him.  Thank goodness he doesn’t mind staying at home.  I don’t think I could handle an empty nest.

I gave those examples because I have fibro.  I hid, I was insane, I yelled, I stopped going out, I stopped seeing friends.  I laid in my bed and wanted to die for 2 years.  I hate that I could have spent at least a little of that time with my kids.

One day though?  One day you will look back over your life with your kids.  My memories are glorious.  We did what I could handle, I didn’t have any pity parties for my pain, we picked things that we could do and what do ya know?  Firstly, I am much better at getting around.  I love time playing my drum when we play music.  I am gloriously happy in my life.

 

The most important nugget that I want to leave with you is this.

RULES

BE GENUINELY HAPPY

I am gloriously happy most of the time.  I didn’t used to be.  I have had to learn how to stay happy.  I figured, why waste time looking all pissed off and wrinkled?  Life is way too short not to smile all the time.  Even if your teeth are kind of bad.

GET OUT OF YOUR HEAD

you are not dying.  Yes it hurts.  Suck it up.  Your kid deserves the best you can give them

KEEP IT SMALL AND SIMPLE

Don’t go to Hershey park or a concert.  Stick with things that you can do

REMEMBER THE BRAIN FOG

There is no reason not to have a helper with you when you go out for the day.  I get do confused sometimes, a good road dawg is important

USE COMMON SENSE

I know that it sucks to have go think of all the extra crap you need when you are going somewhere because of the fibro.  I suggest you just deal and don’t let it upset you.  I have no solution for this, we need a lot of stuff because well, because fibro.

Important to note here that when you are getting your stuff ready to go and you find yourself getting confused, call your road dawg (friend).  When I call mine I tell her it is a Sanity Check

REMEMBER TO LIVE OUTSIDE YOUR OWN BODY

Our bodies can betray us and cause us to feel as though we are in a battle with our own soul.  The pain etc; that we have to endure is unthinkable to most people.  Yet here we are.

This is a constant battle for me.  Trying to live without thinking about my physical condition as all times.  It is a fight I actually win every single day because I beat it.  I am in charge of what and how I think.

I am happy to be with my kids in the time I have left with them.  No matter the ages of yours, spend the time.  Get to know them.  Learn how to play Halo.   You will regret it for the rest of your life if you do not.

This is NOT hard

The clock is ticking, one day they will be gone .  What will your memories look like?

You have the fight.. You can lift a mountain, if you needed to, to make sure that your kids are happy and feeling safe.

Do I Look Fat to You?

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Do I Look Fat to You?

I was just outside thinking and enjoying the weather.  It is my anniversary weekend with my amazing husband.  We have been married for 19 together for 20.  We have raised two amazing boys.  We love each other.  He loves me, even though I am sick and so many husbands/partners run for the hills when their mate becomes ill.  Not my husband, he works even harder because I have not been able to work.

I was thinking outside about selfies and that people make fun of selfies, but that for someone like me it is a really big deal to post a picture of yourself for everyone to see.

I figure they all three deserve the best version of myself that I can possibly give them.  Back to being outside thinking.  I was thinking about how much weight I have gained, but how lately I have been dieting pretty hard.  I don’t have scales, why upset yourself on purpose?

I know I gain weight by what I can get on..  Like when my underwear starting curling and falling down, I figure I am gaining and it is time for new panties.  That sounds very simple but it has been one of my greatest losses, my thin self.

I have gained around 80 pounds from medication.  My meds all say “will cause weight gain” so I figure that added to the fact that I can barely walk I would indeed gain weight.  I was not prepared for how it would make me feel.  I can’t STOP thinking about my fat chin.  Well, couldn’t..  until recently.

I was out at a bar with my hubby and friends and there was a fluffy lady sitting beside me on a bench outside.  Someone went to take a picture and she shied away and said, “please don’t take a picture of my double chin.” I realized I was sitting right there and didn’t think once about her double chin, even though I was obsessed about mine.  It’s in OUR heads, not others.  It’s about how we perceive things. I told her that.  That I think about mine constantly, but other people don’t look at me and think..  “ooh, double chin”…

Here is the magic part, we get what we put out into the universe.  Like the secret, only not bullshit.  It’s ancient, the thoughts that we have, even if we don’t say them out loud, are our reality.  It’s up to us if we want to change our own reality.

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The reason I talked about the selfie is because it may be shameless, but I like that word..  Shameless..  and I also like the fact that I am happy enough with myself to post pics on the internet.  It takes guts to put yourself out there.  So be shameless, post that pic of yourself.

Remember this one thing, it is in your head.  You are in charge.  People absolutely love you, no matter your size.  The people that you love?  They deserve someone who loves themselves.

A really great site on energy healing, and finding your center

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http://samantha-wilson.com/energy-healing/energy-healing-training/

 

This is an amazing web site that will help you find your light and your energy.  It is vital that you slow down and connect with the light, connect with spirit, connect with the earth.

 

 

This is a web site that is all about being strong and resilient.  Help to find yourself, when you seem like you are lost to despair.

Forget Everything you Thought you Knew… Inspiration

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Forget Everything you Thought you Knew… Inspiration

Some moderators on different pages make me feel like I am on some sort of mission to “promote” my blog.  No. Promotion involves money.  I don’t want any of that.  I just want to help.  I won’t lie, I love seeing my stats when they are jumping higher than I could have imagined…  only because that is more people that I was able to help.  Here is my reaction to jumping 200 posts overnight

Now, let’s get down to the meat and potatoes of what I really wanted to say in this post.

I have seen many women warriors lately who talk about giving up, they talk about not being able to get out of bed, they talk about having no reason to live.  My reaction to that is the following:

So today I took the bull by the horns and I did a project that I have been putting off forever.  See, I get it that when preparing to do a project the idea of gathering the supplies and finding a good spot are usually what stop me.

Not today..  What I said in that video is real.  It is so fucking hard to have this disorder, and you are only making it worse if you let it win.  You can live with it.  No, I am not one of those that only have pain and the Doc said it’s FMS..  I have it..  hardcore..

But I did it, and so can you.  Here are pics of what I did today:

They started out looking like this...  all green...

They started out looking like this… all green…

So, as well as going to bed early so I can get up and get as much daylight as possible…  I wanted to have some living things and color on the window where I sit most of the time.

So I painted the pots..

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I didn’t care about the mistakes, they dried looking awesome… Then I put some stickers on them

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Now I have shiny butterflies, living plants, and color in my life..  getting ready for the upcoming fibro winter wonderful…  okay fuck that..  it sucks, don’t touch the snow with your bare hands, you will regret it..  I can say that I highly recommend the two things I talked about here.

First of all, if you can, stay awake when it is light out..  DO IT.  Secondly, bring some houseplants into your universe..  Get some super cheap pots and play with paint.  Don’t try to paint like you used to..  won’t work and you will get sad..  just have fun..  forget everything you think you know and just go for it.

My point?  Make yourself do it..  take shortcuts, do it the easy way..  just stay busy because sitting around thinking about how shit you feel isn’t going to help you or the people you love.

Amish Country and Connecting With Your Soul, Stop Hiding

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Amish Country and Connecting With Your Soul, Stop Hiding

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I live in Lancaster County PA.  Way at the bottom.  It is nothing but a few houses and lots of Amish farms.  In most states with an Amish population, they live in their own little villages, if you will.  Here they are our neighbors.

Horse shit does not come off of cars.  If I knew chemistry I would develop a product that removed horse shit and I would make a little money..  it’s not needed anywhere but here.

That being said there are so many wonderful things about where I live.  Since my condition got worse and I have had to spend so much time at home I have re-connected with the earth and the universe in ways I never thought possible.

Above all else, the number one thing that made the difference for me was finding my spiritual path.  I was hiding and lost and hurting and wondering why me?  Then I found my path.

I connected with the earth on a visceral level that has helped me deal with the constant pain.  I listen when the universe tells me things.  I learned to trust my gut again, and that is so empowering.

The Oracle

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Click here to go to the Oracle Report

Click on the pretty flower to go to an amazing website with information about planetary alignment and moon phases.  It is information that my spirit is interested in, and my son, who is very much the scientist also likes the information..  So it’s a great site.

I have been angry at my dad.  Haven’t spoken to him since February.  I called him today.  I was waiting for the right time.  I just knew when it was and I dialed the phone, and we are on better terms because I listened to my gut.

The lesson here is that I didn’t know when the time would be right.  I listened to myself.  FMS makes you feel like everything is chaos, and it isn’t..  it is predictable.

We will never feel like we are predictable because it is chaos inside… but start watching yourself, reconnect with your soul, no matter how much it hurts at first.  No matter how empty it feels, it is possible to fill it back up, I promise.

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I love that living here I get to experience the seasons to their fullest.  I watch in Autumn as the leaves start to change, it gets a bit colder.  They harvest the corn and the world seems to get bigger.

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Winter, when everything is sharp, even the stars..  Snow and ice are beautiful when you have a woods in your backyard.  It is monotone in color and you do grow weary of it, but it shimmers, it looks like diamonds sometimes.  Put out seeds for the birds and you will have a show all winter long

Spring is when things start coming back to life.  Days are longer and everything is pastel, including all the Easter dresses.  Tulips and daffodils start growing and humans seem to start coming back to life with the trees and the flowers.  Everything is having a lot of sex.  This includes humans, insects, animals, snakes, everything..  having a lot of sex.

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Summer is parties outside, friends.  Iced tea or lemonade with soft pretzels and sunshine.  Lightning bugs making the ground look like it is made of tiny lights.  Sweating and driving with the windows down.

Everyone is curious about the Amish and I have about a hundred stories.  Seeing as how I can’t narrow my focus on this blog I may as well start telling Amish stories.

Most of all I want to leave you with this, it is possible to find your bliss.  It is up to you; if you are strong enough, you can make it happen.  I stood up to my husband last night.  They have all lost respect for me in some ways and I demand it back.

For years I was scared to stand up to anyone.  I was so guilty about having gotten sick that I thought I owed them.  I was empty, so I filled my life with pleasing them.  That was a long road that got me absolutely nowhere.

I stuck up to my husband because of his tone last night.  I am still smiling because I am proud.  I showed my strength.  I am getting it back.

Fuck, I may not be able to literally move that fast. but I am a warrior and I will live my best life.  Also, equally as important to me, is to help others live theirs.

Feeling Groovy, Then I was Quickly Reminded I am NOT 18 and a Ballerina Anymore.

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Feeling Groovy, Then I was Quickly Reminded I am NOT 18 and a Ballerina Anymore.

I have been going through old stuff that I have written.  I thought at first that I would be able to make one of those numbered lists, like Oprah used to have. “10 steps to live your best life even though you want to crawl out of your skin constantly “ Like.. Step 1. Don’t think about your pain today.  If at all possible, dismiss it from your mind.  Okay, that is actually my number one.

The thing is, though, that a step program isn’t going to work.  This is fibromyalgia.  There are no such things as a numbered list because you know damn well you lost the list.

Now, not to worry; I have been thinking of another plan.  I am simply going to tell you my story.  The parts, at least, that are relevant to my journey since fibro stole my life, forcing me to make another one.

When I say that step one is don’t think about your pain, there is a addition to this step you aren’t allowed to say “fibro” or FMS or “fibromyalgia” today and tomorrow and forever and stop listening to your body.  I know that sounds insane, but block your reaction when you can.

It isn’t realistic to keep this up constantly, but you can have more good days.  I have a lot of good days.  I just busted my ass, I fell into a creek from a log..  I am hurting, but I watch the aftermath video and it makes me laugh, shit I am laughing in the video when I was trying to get out of the creek.

Do not think for one minute that I am not still in pain every day..  I am.

We lived in a different house when I first got worse and had to quit my job.  Our bedroom was in the basement.  I spent nearly 3 years down there.  I didn’t interact with my kids because they would overwhelm me immediately and I didn’t know how to handle that energy, so I would run.  Since we have moved I have forced myself to stay in the chaos (also, I have nowhere to hide).  I have teenagers, it is a much different than a toddler.  The similarity is that cannabis will help you keep from vibrating in most cases when your child’s energy makes you feel like you want to roll up like a stunned armadillo.

I have had to work out how I felt and in turn I finally got their cooperation, for the most part.  This took me years..  This is not an easy process.  Baby steps.  You are going to learn an incredible amount of patience with yourself, but you will also learn a lot about yourself.  These are the things that I have done to get my life back, and I am getting so much more than I thought in return.  More on that later.

The point is, you set goals for yourself.  One of mine is to slow down and vibrate at the level that is healthy for me.  Another is to stop cussing SO much.  Another is to do “fibro scheduling”, because it takes me on average about twice or three times as long as it would a healthy person, take more showers, work on my pile of shit, Just to name a few…  Make more crafts, but that requires time, and I have to forgive myself, at the end of the day, if I didn’t get it all done.  The point is, there is no way that I can do everything I want and I have to know when to pull back.  Luckily I have a sister love who calls me out when I need to slow down.

I did go outside on a walk in the woods today.  I had a lovely time.  I knew that I needed to connect with the earth and ground myself.  I did that.  I did a small ritual to help cleanse me of all that “hurry, run, it has to be now” energy that I tend to get.  The difference is that I steer that energy at a purpose now.  I simply have to keep looking for that line between going slow enough and getting everything done.

It is a constant job, running my body and trying to make a new life for myself.  I get knocked down, I have days where I don’t get out of bed.  I have moments when my kids make me want to pull my hair out..  That still happens, but I also have a tool belt full of metaphorical battle implements in which to handle myself properly, trying to keep my voice down because the ringing in my ears makes me talk really loud.

So yesterday I went for a walk in the woods, back a trail that The Best Husband in the Whole World is making.  It follows our creek…  We are allowed to play there, just no fires or motor vehicles, which is fine.

Here are some photos I took along the way..  because pretty Mother Earth

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I walked slowly, reconnecting with the important stuff before coming back in here to work on homework, blog, family…  I slowed down.  I saw what is going to be an amazing picture..  On the other side of this log that fell across the creek.  I was reminded of times in dance class and gymnastics when I would be graceful like a swan and balanced like….  things that balance… So I got the idea that I would simply walk across the log..  Easy Peasy right?  Well, please watch my video…  because this is the aftermath of my “Great Log Adventure”

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Now, this is the perfect metaphor.  You get knocked down, you laugh your ass off at yourself, and you pick yourself right back up and keep going.  Well, it’s a version of going, of course I am sore today, totally worth it.  Oh, and I made my husband film me.  I figure if I can make someone laugh, even at me…  it was worth every pokey thing in that devils bush that I landed in.  I am not sure they are called devil’s bush for real..  but that is what I shall call them forever and ever.