Tag Archives: fibro

The Storm

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The Storm

Okay, so my title isn’t exactly brilliant.  The thing is..  I am not brilliant right now.  As a matter of fact I am functioning way at the bottom of the “Normal Function Scale” and I may not make any sense at all.  There is a storm coming and I am in an intense amount of pain.

Hopefully I can articulate what it is that I am feeling because it helps to know that you aren’t alone in feeling certain things.  The thing with Fibro is that we feel these things so intensely sometimes, that it can be really hard to explain to our partners exactly how we feel.  They know that we are suffering but other than that, only others with Fibro can really understand the struggle and the intense, soul sucking pain.

I know that I am supposed to write regularly in my blog, but I cannot.  My heart is in the right place.  I know that I SHOULD do this thing,but I cannot write on command.  It is so difficult to find my voice in the silence that makes up my days.

There is a storm coming.  I was feeling pretty good, then I heard thunder and the pressure of the barometer changing has me feeling like..  Well, I feel like my spine wants to come out and form a tail.  I feel like my arms weigh a ton each and I am so happy that I can slowly type this out on my very small (small so I don’t have to reach ) Chromebook keyboard.

My head, that feels like my face wants to peel off, starting with my forehead.  My legs also feel like they weight a ton and a half.  My skin is burning, sort of.  I feel like I am having a hot flash, although I am only 40 so it isn’t an actual hot flash.  My hands feel like they are sort of asleep, and also really sore, with muscle failure because I am typing.

My feet feel like…  well, they are usually super numb but right now they are burning?  I cannot find words..  electricity in my feet.  Shorting out and shooting invisible sparks that are really uncomfortable and burny.

I make the paragraphs short because it is much easier to read a short paragraph, and I am not sure why.  I know that is a Fibro thing because I used to read so many books the librarians knew me by name and were constantly shocked by how fast I would go through a giant stack.  I don’t do that anymore.  Again, not sure why.

That is a lie, I know why.  I hate to admit it.  I hate it.  I hate that I don’t remember what I read.  My reading comprehension is nearly gone.  I will read the same page over and over and not remember it.  It scares the shit out of me.  I feel really stupid.

Same with movies.  I will totally forget what I watched.  Even if it was last week.  I can watch some things three and four times and still not remember the movie.

I know that a lot of people write about Fibro.  I have this blog because I know that we are all at home, in pain, alone in the silence, and (sort of) scared.  My kids are grown.  My youngest graduates high school in two weeks.  My house is very quiet.

Rule one:  I should always listen to music when I write.

Music helps.  If you let it.  We should really work on that.  Although, even as I say that I don’t want to stop writing long enough to get music going.

The storm…  I have run out of things to say.  I typed this in real time along with my brain flow because I bet that those of you with Fibro will get every single thing.  My seemingly random thoughts and short paragraphs; as well as my grammar and spelling are all because: my brain.  It won’t work while I am in this much pain.

I am concentrating so hard on NOT falling to the floor and screaming that it is exceedingly difficult to write my thoughts as they are so thick and muddy.  Brain fog.  That is what they call it.  I wish it was only fog.  It’s more like Brain Mud, or Brain Tar.

Live to fight another day.  Survive.  Turn on some music.  I will as soon as I am done with this paragraph.  Thanks for reading.  Just know that you aren’t alone.  We are out here.

 

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Fibromyalgia Makes me Hate Myself

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Fibromyalgia Makes me Hate Myself

It’s not like when I was in middle school and really hated myself.  It’s more like I have all these things that are broken and don’t work.  I am a hot mess a lot of the time.  I hate that aspect of myself.

My fellow warriors, you may not hear my body screaming, but I know you know what I mean.  Even when I am having a good day my body is still screaming.  I write, so surely my vocabulary is varied enough..  but no.  I have tried to think of better ways to describe what it is like and I simply cannot.  My body is like a toddler throwing a damn fit.

I am surrounded by crafts and coloring books and  computers and my Chromebook.  I have no right to feel bad or bored or complain about my situation.  Tons of people have it so much worse, and truly I don’t forget about that.  Ever.  Except I think that we are allowed to complain as well.

My husband doesn’t like it when I need him.  I am at a really low point lately and I simply don’t know even what is wrong.  I need a hug and a pat on the head, but he doesn’t “do” that.  I love him, don’t get me wrong..  this is a thing I accept about him, but it is really trying at times.

Every single day I tell myself, today I will color a picture.  Then I end up binge watching a show and I don’t.

Every day I tell myself that I will write.  No matter what.  Then, guess that happens?  You got it…  TV shows.

Every single day I say I will make one piece of jewelry..  Not a shocker..  I don’t.

I am in a huge rut and I don’t have it in me to pretend like I am happy anymore, at the moment.  I am OKAY most of the time.  I pretend for 90 percent of it that I am happy but truly my body is screaming and I am miserable.

This post is about ranting, but it is also to point out that we need to hit these lows at times.  I think it is healthy for us to express these feelings.  Surely keeping them hidden is horrible and difficult.

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I never feel pretty…  well almost never.  I know this post is all over the place, but fibro is all over the place so I know you can keep up.  I had my friends dye my dreadlocks blue and purple and I feel pretty for the first time in SO long.  I don’t remember the last time.

So, am I telling you to color your hair blue?  No, but you should certainly do something outside your comfort zone.

My current goal in life is to do things as often as possible that make me uncomfortable and then write about them.  That is my new project and I am going to do it dammit…  I am..  I have stopped watching shows for the moment..  but I have found a video game I might be getting addicted to.

So, stay tuned and I will see you soon.

 

 

 

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.

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.

Fibromyalgia: The Thing we Don’t Talk About

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Fibromyalgia:  The Thing we Don’t Talk About

Ok.  One day while I was on Christmas vacation I read an article on my phone.  It was titled “Fibromyalgia and aging” so I wondered what I was in for and I read it.  Thing is, it talked about our grey matter in our brains.  It wasn’t about aging and what fibro does.  It was about how our brains are aging.  Everyone loses grey matter, we lose it at a rate that is 3.5 times faster than healthy people.

I tried to off myself.  I thought that this is it.  Here I am fighting this nightmare of a condition every single day and now I find out that I am going to end up like my grandmother..  only WAY earlier than it hit her.  I spent days in a mental hospital and they let me come home.  I am no longer a suicide risk.

How have I dealt with it since?  Well..  I really haven’t.  It’s still there.  This huge fact that I can’t even talk to anyone about because it is too awful and no one knows what to say.  It’s like when someone dies..  what can you say?  Sorry?  That sucks?  None of those things seem right.  Certainly, none of them help.

I have to help myself.  I have to stop the damaging thoughts.  I have to remember that this is out of my hands and I have years left.  I can spend those years freaking out about losing my shit or I can spend them having as much fun as I can possibly have .  I chose the second.

I don’t have to worry about damaging my brain..  it’s doing that all on it’s own.  That is freeing.

Here is the thing.  I don’t want anyone who reads this to get to the point that I was at.  Maybe this will make you cry.  Maybe it will blow your mind, or maybe you already knew.  Either way, DO NOT let this make you suicidal.  First of all, it’s a lot harder than you think to commit suicide.  Secondly, it is selfish as hell and you should look forward to the times ahead.  It can be happy.  You can have fun..  you just have to figure out how fun can happen around your symptoms.

I have noticed when my brain fog is bad I am easier on myself about it.  Fuck it..  I forgot words, or that I had something cooking in the oven..  at least I am still functional..  if not highly functional..  I still got it.

Never forget that every single day counts.  I have had writers block because this is the story that wanted to come out. I had to write and share this because we should all know everything we can possibly know about this fucking shit we call fibromyalgia.

I didn’t want to write this, because I don’t want to do to someone what I did to myself.  Please don’t go there.  I won’t say some shit like, “you have so much to live for” because let’s be honest, it sucks to live with this shit.  On the other hand, I love my life and you can love yours too, you simply have to work it.  Do what you can when you can.

Change your expectations of yourself.  You aren’t the same and it is okay.  You rock just like you are and all you have to do is let yourself know that.

I love you all and please feel free to message me if you wanna chat.

 

 

The Fibromyalgia Mystery Solved

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The Fibromyalgia Mystery Solved

I will start this discussion with a question.  That question is this..  How hard do you work, every single fucking day, just to keep a fake smile on your face?  How hard is it when those closest to us hurt us on a fundamental level?  I want to tear my own hair out.  I have at times.  As well as the whole beating myself in the sides of my face.  I admit it.  I did that.  life spirals out of control and we want a normal life for our partners and our kids but DAMMIT, sometimes I am losing my shit.

Now..  I know what most of my triggers are.  I know when to walk away.  I know when to keep my mouth shut, even if I have to hold my lips together with my fingers (and I have done that as well)

By design fibro is destined to turn each of us into a control freak.  We cannot help it.  Our neurological systems are broken, all the way broken.  We have to know what our triggers are, we have to stand up for ourselves.  We have to be ready if we are going to fall because of a loud bang, or yell because someone thinks it funny to scare you..

We have to be on guard at all times.  We even have to practice what the hell we tell people when we are acting like a fucking insane person; and that is almost the hardest part.

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I am years in.  I have had a lot of practice.  The one thing I can tell you is that those closest to you do care, they are just tired of hearing you talk about it all the time.  I know..  sacrilege that I said that.  I know that.  I also know that I am my own psychological study and the minute I stopped talking about what hurt that day, the minute that I stopped saying, “you think that hurts…” the minute I started to give them me..  just me, they responded.

Sure, in an ideal world our partners would ask a million times a day how you are.  Once you stop talking about how you are, they actually start asking.  In an ideal world we wouldn’t have this shit..  but we have it.  Hold it, let it build you up.

Today, I am knocked on my ass.  I am out of school not by choice and my world is pretty shattered.  I cleaned my fibro pile of stuff and most of it was my school work.  I want to hide in a closet and cry and cry because I have no idea what is next for me.

I would like to think that my husband would come home, realize how hard my day was, and give me a hug.  Let me tell you, I am more likely to hit the lottery.  I have made my peace with that.  We struggle enough, the last thing we need to worry about is training our partners how to treat an ill person.

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Live Love Fight like you fucking mean it.

Oh, and yeah..  by the way; I cuss.  I say “dirty words”.  I had a group on facebook delete my blog and yell at me for fucking curse words.  I promptly told them that I have this disorder that stole my life and causes me to be at war with my own body, the very last thing on my mind is whether or not you approve of my language.  She said she would pray for me.  I told her that I am great and she should pray for the ladies that don’t get good advice because it has a few F bombs in it.

I get it if you don’t like the language.  I respect that.  No one is making you say it.  Ah well…  My advice gets out there.  Enjoy and please friend me on facebook and follow my blog.  My heart and my love are in every one of these words.  I give freely of that in the urgent desire to help those that I can,.

Just Smile and Nod

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Just Smile and Nod

It happened.  It finally happened and I caught her in the act.  Let me explain.  Yesterday we stopped at the liquor store.  I was having a really hard time walking.  It was a nightmare.  I was fibro walking to the max, including frequent stops at the posts so that I could make it to my car.

I tried to go quickly to the car.  You warriors know how this is..  Coming in hot bitches, better not be in my seat.. I looked at her as I turned around to squeeze my ass in the car and there she stood with her shorts and cowboy boots and cute little hat..

She was laughing at me.  She caught me looking and said “Are you okay?” with that big fake smile those pretty bitches have that make men melt?  You know what I mean.  Except I am not a man and my life is falling apart.

I answered her..  I said.. venomously, that I have fibromyalgia.  She stopped laughing.  Hubby says I look drunk when I fibro walk, but I really don’t.  I need to lean because I am weak but I am not wobbly.  At any rate, he fell for the pretty smile.  I knew better.

I cried on the way home.  I know that a million people talk about me behind my back..  I am ok with that.  When you see that I am obviously in a great deal of pain and you laugh at me..  2 days after I find out that I cannot finish the 24 credits I need for school?  Well it was too fucking much.

She giggled and shook her ass and every little ol thing was just fine.  I was not fine.  Not even close.  I do not even see a FINE in my future.  I know it is there and I will find my path again.  I am used to starting over.

Today has been better.  My heart is not hurting quite so much.  I feel like I have some options and I know that, at some point, I will finish school.  Until then I will simply have to kick ass wherever I can.

So, even when it is out of the kindness of your heart (not the case with the tiny shorts girl), remember, that someone walking/talking/wheeling..  whatever, if they are not falling down or yelling for help, a simple smile and a hello is needed, we will tell you if help is what we need.

D is for Disabled

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I have been remiss in my writing lately.  I attend school and it has been really tough lately.  I keep telling myself it’s because the classes are more difficult (which is true) but I also know that my thinking and logic are pretty broken.  For the new people reading this; know that I write from my fibromyalgia brain.  The sentences might run on, or not.  I may use the wrong word or seem really random.  I write for folks with fibro so I write FOR them by not trying to have perfect structure or grammar. I type what is in my brain and that seems to work.  I want to reach a large audience and I know how difficult it is for me to read long paragraphs. I very much want to get the the point, eventually.

Today I am talking about flare ups and disability.  <— there, a thesis.  Yes, I also try for the occasional giggle.

I am writing this today for two audiences.  I am teaming up with a new friend that has RA.  Her name is Allyssa Marie.  Fibro warriors have a lot in common with people that have RA.  Hell, we have a lot in common with anyone who is in pain all the time.  No one else can understand and for that I am glad, I wouldn’t wish this on anyone.

Now, I also like to keep my paragraphs short and to the point, this is a Fibro thing.  So once again, structure suffers a little bit, but I want everyone who reads this to find it easy and informative read.  I wanted to start this post with some information about fibromyalgia flares.  I know that warriors with RA also flare up.  What I don’t know is if it is like our flare ups, or if it is different.

See, last week I was having a huge flare.  I was miserable and I couldn’t think in a sentence, let alone speak in sentences.  That one is what I call my thinking flare, it is usually accompanied by some burning on my skin and a feeling like my hair is growing.

I have another flare up and this is the one I call my physical flare.  This is what I am suffering right now, since yesterday.  It took me several tries to get out of bed.  My hands feel like they are going to blow up at any second.  My head feels the same, my vision is blurry, and I am working up the energy to take a badly needed shower because, yes, I put them off because they make me so tired.

It sucks so bad to get out of bed when it hurts to move.  However, a bit of advice?  I learned that staying in bed unless I am sleeping or getting lucky is not a good idea, no matter how badly you want to stay. It is called sleep hygiene and you have to force yourself to stay out of bed.  I promise, it sounds like torture but it is not.  It takes a while, and some nights I don’t even try, but it does really work.  I break the rules at times and take a nap but only if I am falling asleep where I stand, which brings me to the third type of flare.

This flare up is so intense in involves every muscle, nerve ending, ache, pain, and a feeling like your skin is on fire.  Those flares are so intense the only thing to do is lay down, you are not capable of anything else.  Which brings me to my next topic…  disability.

I belong to a lot of groups on Facebook and every single day I see people getting really excited because they have been given disability.  I am happy for them, but I thought that I could do this.  I thought that I could accomplish something.  I wasn’t wrong, but I am disabled.

I was a heroin addict 15 years ago for about three months.  Luckily I stayed off opiates easily after that, even with fibro.  However, I had to come out to my mom and everyone else I loved.  I had to say, “I am a heroin addict”.  I thought those would be the worst thing I would ever have to admit about myself out loud.  I was so very wrong.

Having to say yes, I am disabled, I need help.  I need some income. That was the hardest thing I have ever admitted. Saying  “I am disabled” still makes my stomach hurt.  My family has suffered greatly because I was no longer able to work.  It still took 4 years to get a diagnosis.  I know that I will get it this time.  My heart is broken.  I was a dancer, a ballerina.  I was a cheerleader in high school.  Now I can barely get into the bleachers to watch my son be the drum major.

It is interesting on my paperwork for disability they asked me where I hurt.  I laughed and laughed.  Everywhere, is what I answered.  Then it asked me several more times, in different ways, and every single answer was everywhere and always.  So, I even got to laugh a bit while I was filling it out.  Knowing though, owning, the title of disabled is a crushing blow.  I know that I am.  I knew that I was a drug addict.  This does not make it easier to say.

I used to work at the PA Renaissance faire putting women into corsets.  I loved it.  I loved making women beautiful.  I also had to quit there.  I want to go and see all my friends that still work there and I am wondering if one can rent a hoverround.  I couldn’t even make it to the front gate without needing to rest.

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These things could all bring me down.  These things could all make me want to quit..  to give up. However, these things only make me want to work harder.  No one and I mean NO ONE and NOTHING can change the way that I live but I am the only one in charge of my brain.

I choose happiness over misery.  I choose to laugh when I know I need to.  I choose life, no matter that I have to crawl sometimes..  I choose to live my best life.  I also choose to be happy.  You have the power, in your brain, to control your own destiny.  It isn’t gone, nothing important is gone.  It’s simply different and we just have to learn to love ourselves when our settings are on “different”.

It is so damn hard to try and explain what it is like when your brain and mouth refuse to work together.  I have worked for years to make my sons and my husband understand.  They finally do.  Want to know how I made that miracle happen?  I stopped trying to explain myself.

I didn’t hide anything (except the pain, we all do that) I just existed.  I stopped trying to make them understand and I started to live my best life in a whole new way.  I interacted with them and if I struggled to find words, I didn’t explain, I just make up words.  They will eventually learn your language. This new method, the one where we exist and let them watch, works.  It takes a lot of patience and a long time, but you will get there.  If I can do it anyone can.

For my words, when I lose them, conversation goes something like this :”Are we going to the field thingy to watch Rudolpho Hans play running ball?”  Which translates to, “Are we going to the stadium to watch the Saints play football?”  I know that first one was mostly inane gibberish.  However, I got A sentence out.  They will start to learn your language, I promise.

This just happened…  an example of my speech issues: in a text to my husband, “Except smokes.  The shenanigans cigs.  No… Monrovia..  dammit.. Morgan…  Fuck it.  Those cheap ones” That was my text to my husband.

I know that I should quit…  that isn’t why I shared this.  I shared this because it is real life..  My life…  Maybe yours too.  The cigs are Mavericks, I finally thought of it.  I really have to laugh..  this is funny.  I should write children’s books, I am excellent at coming up with fun, meaningless, quirky words.  They are easier than regular language most people use to communicate.

Warriors and new friends with RA it has been a pleasure to write some words for you all, maybe I can help a couple people.  Remember, always, LIVE, LOVE, and FIGHT ..  We got this.

Friends, Please Read. I Remember, Then I Broke, I Miss My Life.. I Want You Back

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Friends, Please Read. I Remember, Then I Broke, I Miss My Life..  I Want You Back

I am 39 years old.  I have two sons, who I had when I was still young.  They are 17 and 18 years old.  I remember that feeling, when I was young and married to an Army guy..  I remember when the grocery store was my “get out of the house” card.  I always felt slighted because I wanted to do the fun stuff the other people my age were doing.

Now I am more than happy to only leave the house in a weeks time to go to Walmart.  With fibromyalgia everything is more difficult, going out nearly takes an act of congress.  Putting on a bra nearly does me in these days.

I have friends and I am afraid to hang out with them because I am afraid that they won’t like the new me.  I am so much different, I am scared to lose them as friends.  I miss them so much.  But the fear of losing them forever keeps me away.

They live far away, so it isn’t that difficult to maintain contact on the internet..  Because then I show them what I want them to see.  I don’t want to be dishonest, but I am fucking terrified that none of you will like me anymore.

I found occasional help with the boys and I have had a great life, but I remember…  I remember saying to my husband, “yeah you think that going to Walmart counts as an outing” and at the time I remember..  It didn’t count, I struggled for a long time.

Incredibly bored and lonely, this was before internet, this was before cell phones.  I remember that I was different and I could walk and I could think and I had friends; some of which are still my friends, from afar, because I am fucking terrified that they won’t like who I have become.

I could keep up with my boys.  I got lucky there.  I stayed healthy while they grew.  Healthy enough to really make up for how shitty I was in the beginning.  Then I was 30 and I had to re-evaluate.  I remember when I felt like I had it all.

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I remember getting a manager job at Walmart, where I literally walked miles every single day.  I remember thinking even though the job was sort of shitty, I had it all.  I was able to camp all weekend with my family.

I remember.   I remember having rough times, with drugs, with myself, with my marriage.  I fought and struggled and we fixed our marriage, I fixed how I was with my kids..  I still didn’t think it counted as a trip out when all I was doing was going to Walmart.  But I was happy.  I was happy and I didn’t take it for-granted..  thank the light for that.

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I spent many years content.

I couldn’t wait to hang out at the Happy Hippy Haven every single weekend.  During those parties I never had a bed, I was able to sleep on the floor, or not sleep, which was often the case.  However, I had the time of my life.

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I remember watching my kids grow and that will forever be the best accomplishment I am likely to make.  They are beautiful people who are going to make the world a better place and I am more proud of that achievement than anything else I can imagine for myself.

So, I worked..  I was there for three years.  They were pretty great.  We had money.  We finally found an awesome rental house.  Things were going our way.  I even went and I bought a brand new Kia.

Then I started feeling like my lower back was numb, and I would get horrible shooting pains.  Then I remember hanging some shirts above my head and holding my arm up seemed to be harder and harder every day, and this really scared me because it was summer, the stuff was not heavy.

I remember when a co-worker made a joke and tapped me on my arm and it HURT, and it hurt for a really long time.  I knew that day that something was seriously wrong.  I felt in my gut that this was the beginning of something.

I remember when I used to take comfort in a shower.  I remember when I could hang out with my friends.  I remember when I could dance and spin records.  I wish so very much that I could forget, because even as I type it brings tears to my eyes.  I miss my life.  I miss my friends.

I have spent the last few years figuring out who I am, with this life altering disorder.  My whole life is different.  Everything is different.  I love getting to go to Walmart once a week.  I am really good at being happy with what I have.

I fucking want more.  I want to see more of my friends.  I want to try more stuff.  I miss my life, but I will be damned if I lose another second of living to this fucked up monster that lives in my brain.

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Please text me friends.  I miss you.  I want you to decide for yourself if you still want to hang out.  Having a few left is so much better than closing myself off to all of you.  I get it if I am too much..  but I will not give up without trying.

Live, Love, and fight like a girl ❤

H is for HELP ME.. This Sucks

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H is for HELP ME.. This Sucks

I want to know why.  I want to know how it is possible for millions of people to suffer from fibrmyalgia and yet no one listens to them?  How is it that people around me literally think that I am insane and faking it for 6 years now?  I have gained 100 pounds, I have made my husband and my sons have to deal with a sick wife/mother, I never leave my house, I fall down in public, I can’t sleep some nights…  how in the hell can anyone think that I would fake something for so long?

Well, one theory of theirs is that I am faking it so I can stay home and smoke pot.  The funny part about that one is that when I was working at Walmart I was smoking MORE than I do now.  I was so baked all day when I worked there, just so I could continue to ignore how I really felt about that place.   Point being..  I was really high.

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Now I medicate.  It is a very different distinction.  I medicate with an herb and break the law because I am 14 years clean from all opiates and I intend to keep it that way.  Arrest me if you will officer, but I won’t be going down the opiate rabbit hole ever again.  Opiates steal your soul, not unlike some unholy demon we all see in scary movies.  Opiates didn’t make my head spin around, but it may as well have.

Yup, I smoke..  rather I vaporize…  I lost my life to this disorder.  I lost the ability to take walks.  I have lost the ability to touch ice or snow.  I have lost the ability to sew.  I cannot make the things I used to make and on days like this one I can’t even make jewelry.  I don’t even try because I know it won’t go well and I will be sad.

I am okay on these days because I have a heated throw that I lay under.  So, I am okay..  but this is no life.  I tell everyone to have a positive attitude..  and I still do..  but on days like today it is okay to look like a scarecrow and cry a couple of tears.  I allow myself some time to feel sorry for myself.  I don’t drag anyone else down, at least I try not to, but damn if I don’t wonder what the hell I ever did to make this happen.

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I tell warriors not to ask themselves that pointless question.  I think, though, that is impossible.  I try to catch myself before I actually have a full blown pity party but hell..  this sucks.. and I hate to use the F word, but this is NOT fair.

Fair..  the all important word here.  The F word that really matters to me today.  I see all these insane horrible people that run this country, or belong to ISIS or what have you and they are fine.  Their bodies work.  I watch videos online and I realize that I have forgotten.

I have forgotten what normal feels like.  I have forgotten the warm comfort that healthy people have when they get out of the shower.  I have forgotten what it was like when stepping outside, even when it is 2 degrees, wouldn’t shut my body down.  I looked forward to forgetting but now that I have it is even scarier.

My brain..  it won’t work.  It won’t work when I am trying to talk to someone.  I feel so stupid because I am skipping all over and the words take so long to make it from my brain to my mouth I end up talking nonsense.  I say things and within a minute or less I totally forget that I have said anything.

Point is, this is terrifying.  Sure, we aren’t dying..  but I have to admit that some days I wouldn’t mind so much if I were.  I don’t want to kill myself, but daily torture wasn’t anywhere in my five year plan either.

I will quote Will Ferrell in Talledega Nights..”  Help me Oprah Winfrey, Help me Tom Cruise, Help me Jewish God… ” Please, there are millions of us,. why are they still giving us depression medication?  Why can’t we get the help we need?  Why can’t we get the attention that we deserve?  We all deserve better than this.