Tag Archives: life

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.

 

 

 

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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.

 

 

Starting Over and Over and Over and Over. I am tired. I thought I wanted to give up.

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Starting Over and Over and Over and Over.  I am tired.  I thought I wanted to give up.

I barely remember what it was like before fibro.  I know that I could take a shower and not need a nap afterward.  I could keep up with my friends and my kids when we went out,.  I could ride a roller coaster.  I could run.  I could create, and I could find a job that suited me.  All of those things are gone.  You don’t appreciate what you can do, until it is all taken from you/

I compensated.  I started to attend university.  I even double majored in sociology and psychology.  I am 20 credits away and suddenly I don’t get to finish unless I give them $10,000.  Yeah, you heard me..  10,000..  Yeah, like I have that.  I have never in my life had that much money.

It was disheartening to say the least.  I was suicidal.  School is what made me feel like a human.  I figured I could graduate and help others with my knowledge and skills.  I won’t be graduating now, however I am finding more and more that the credits are all that I need.  That is the one piece of good news that came out of this.

The other bit of good news, for all warriors is that it is possible to lose something so big that it was your life and find your own way to your next thing.  We have to keep our brains working.  We have to stay as creative as possible.  Seriously, find some sticks and hot glue them together..  who cares what it looks like?  You had fun doing it.

I still fight the pain in my gut.  I gave the school 5 years of myself.  My family is supportive.  There have been many times that I have had to do school and missed some of their stuff.  I can get my transcripts and finish class by class (yes, at a totally different school).  I have a plan.  I am just waiting for the fire under my ass to get myself past this tragedy.

I laid in bed after I found out and I went back to my old ways..  fantasizing about how I would kill myself.  I know I am a wife and a mom but that doesn’t come into play when I go to these dark places.  I truly figure they are better off without me.  Shit, I worked my ass off and I can’t even make college happen.  I can’t stay in this place for long, it seems like an insult to the universe.  I would never do it..  but the fantasizing has gotten me through some dark places.

I have things to offer.  I help people.  I have been given insight and gifts that will help many.  I recently found out that I have more to give.  I am not worthless, I am simply being toughened up.  I am learning how to fight for what I want.  I am learning that I am worth it.

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So are you.  Right now, every time I start to think negative thoughts I find something to do.. There are a million things you can do.  Not for sale..  just for you.  One step at a time, one project at a time.  That is the other part.  Instead of looking through the mountain that is my craft stuff, I know what it is that I want and I get the stuff for the current project…  then I don’t leave piles of craft supplies all over the house, with no idea what the hell I was thinking anyway.

The whole point here?  You can’t give up.  Life is going to hit you hard, it just does when you are already down.  I don’t know why, but I do know that I have to take this time to grow and learn and make myself even stronger.  Yeah, it feels like “surely this is the last test and I shall rest and be ok for a while” but guess what?  It doesn’t.  However, it is all in how you handle it.

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I cried with the school thing..  I took a month worth of xanax in a week and a half.  I was wrecked.  I didn’t think I could come back from this one.  In some ways I think I haven’t.  I am more confused than before.

Water is healing, cleansing and amazing to meditate in…  this is me just the other day..  it was the bump I needed to get myself back in the game.

I can’t remember the day or really random things that I should know.  BUT I am back and I am painting a chair and I am. once again, working the baby steps technique.  Thanks for listening..  always remember you are not alone.

Friend me on Facebook…  PM me..  I am good at what I do and I am here to help if you need it.

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 ❤

Learn How to Start Over, Find the New You..

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Learn How to Start Over, Find the New You..

I see so many warriors struggling with fibro; fighting the fibro as though if they try hard enough they can be strong enough to make it stop.  Mind over matter, that is how we are trained in our lives.  As we grow, that is part of the schema that makes you who you are..  I did it.  I said, I can fix this.  I can concentrate hard enough and maybe I can make it go away.  If only I was strong enough I can overcome this.  I was a ballerina, I was a Marine, I was an athlete.  I am none of those things now.  I am someone who has had her life taken from her by this fucking menace called Fibromyalgia.

Thing is, I was doing it wrong.  I can’t fight this.  Have you ever heard the rule for if you step into quicksand?  If not, it goes like this..  the more you wiggle and try to get out, the faster you sink.  Don’t fight the quicksand, you will sink quickly.  Don’t fight against the fibro, you will sink.

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Now, I figured out, after years of laying in my bed thinking that today may not be so great but tomorrow I will surely feel better.  This can’t be happening to me.  What have I done to deserve this constant pain?

No one deserves this pain.  Period.  Karma has nothing to do with this.

I digress…

When things didn’t get better I laid for a long time in bed concentrating as hard as I could, thinking that I could stop my heart.  That way it wouldn’t be suicide.  I was a hot mess.  I did that for two years.  Apparently, you cannot concentrate hard enough to stop your heart, I had to figure out something else to concentrate on.

I had a light bulb moment one day.  I realized that this is my new reality.  This is it.  I have lost my life to this condition.  I must mourn the losses.  I still mourn the things I lost from my old life.  I used to be able to spin records.  I could dance, I could walk in the woods, I could cross a creek on a log..  Almost every single thing I took for-granted, including my ability to walk, shower, sleep.

It takes a while to get over being sad that you lost all the things that are out of your reach now.  I still have moments when I mourn what I used to be.

The thing is, you have to start back at zero.  Start your process.  You know what needs changed.

I realized that because I was so caught up in the condition for so long that I was literally equal with an elementary student emotionally.  I realized that it stole my brain, and the schemas I had all worked up in my life were different.  I had to step back, sit down in the desk from 2nd grade, and add my new life into new schemas that work with the person that I am now.

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A schema is a term I learned in psychology class.  A schema is a group of information that we learn.  For example, a baby will learn how to hold a bottle on their own, then they add to the schema and learn how to eat cereal, then they add to the same schema the ability to hold a sippy cup…  All these things are a schema.

We had our grown up schemas figured out, then WHAM it all changes.  You have to admit that these things are gone.  Mourn them.  mostly figure out where you are now.  Give up the struggle and start over.  Hold hands with your condition.  Start back at zero.  Yeah, it sucks ass.  A lot.  But the result is a happier life.

I have brought my grades up, I have learned how to focus on school.  I figured out that even though I can’t feel my fingers I can still wire wrap stuff.  It takes me longer, and it does hurt.  However, the satisfaction that you feel when you complete something cool is off the charts… amazing.

Remember, though, that even the losses are good.  When you are building a person, you need to know what you can’t do… That may be more important than the things you can do.

If you can find one or two things that you enjoy, take off, do it whenever you can.  If you fail, go ahead and cry if you want, this can be frustrating.  Throw things..  Not at breakable stuff, of course.  But in the end, you start to learn who you are with this disorder.

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Once I learned who I was, and went through the process of getting to know myself, I realized that I am a bad ass.  I realize how strong I can be.  I realize that I am a good person.  People saying fibro is fake don’t bother me.  People that are my blood and read my blog so they can make fun of me..  well they bother me a little, but not for long and never very much.

Point is, you can do this.  You can be a badass.  Follow along with me because I am writing a paper about fibromyalgia that will certainly contain information none of you have.  It will help, but learning the new you is the goal for this post.

Never say You’re Sorry

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Never say You’re Sorry

The snow storm has hit.  I don’t feel much better than I did yesterday, but a little.  We got the card game Cards Against Humanity.  I played last night with my family.  It is a hilarious game.  Not politically correct, but hilarious.  At any rate, my pain got to the point that I was yelling out when a particularly hard pain hit me.

I kept yelling out then apologizing.  I realized there is no reason in the world that I should apologize.  Even guests in my home have to accept that this is part of what goes on in my home.  I tried to put it into words in the following video that I recorded, but I was having a hard time with words.

I am still having a hard time with words but the thing is, sometimes you can’t help it, and a sorry comes out.  I simply don’t want warriors feeling worse about an already horrible condition.  I would never suggest you be rude, but use apologies for when they are truly called for.  You should never apologize for being ill or needing breaks or yelling out when one of THOSE pains hits us.

I have made it clear with my family that if I yell HELP I need them.  Otherwise, the symphony of sound coming from me should be ignored.  I promised them that if I need it I will yell HELP.

Don’t apologize for your pain, just deal with it how you do.

Now, I saw a post on my page called Fibromyalgia can be Funny, in this post warriors are talking about how they wish that it was just the pain, that it is the rest of the shit that comes with fibro that makes it so horrible.

I have read every response and in my mind the whole time I am thinking about when this nasty shit started..  I would never have imagined thinking that the pain was the lesser of the evils that attack me with this disorder.

I am amazed that this is now the truth.  I want to remember things.  I want to feel like I slept when I wake up.  I want to be able to have a normal conversation on a telephone with the lady at my Dr.’s office.

I, like most of the warriors in my group, would take the constant pain over all the other shit.  Brain fog, forgetting, remembering to forget, lists, piles of shit that I mean to clean up every single day and I never manage to get to it.

All this is changing our entire life.  I am not the same person I was before this started.  I have worked hard to get where I am.  I am constantly working on myself.  I find the things I feel need worked on and that is my focus.  Little mini “me projects” that help me get to know this new version of myself and live the fullest life possible.

Remember, Live, Love, and fight..  or nap..  if that is what you need.

Everyone Breaks

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Everyone Breaks

I know that it can seem like I have all my shit together (LOL, I left this and came back to it, read that first sentence and nearly pissed myself laughing).  I don’t even come close, ever, to having my shit together.  However, If I have learned all these things about FMS, then I must know how to deal when the metaphorical shit hits the fan.  Truth is, I have no idea how to handle things some days.  Truth is, I lose it..  a lot.  Truth is, I am as broken as I have always been, I simply have learned some tricks to dealing with it so it doesn’t knock me on my butt every single time.

I notice that when I have reached a state of homeostasis..  I feel okay..  things hurt but nothing I can’t deal with..  those are the good times, and even though I hurt, I try.  Example, my sister in law (sister really) is a Zumba instructor.  I went to one of her classes thinking I would give it a try.

I can say a couple of things about this class..  first, my sister is an amazing Zumba instructor.  She is smiling and her energy level is infectious, and she sucks in the people working out like a good musician can.  Women of all sizes, ages, you name it..  they were all there and they were working it.  I was so impressed, not only with my sister, but with the people taking the class.  They love it.

Now, I am sure you are wondering how I did…  Well..  I only sat a few times.  I stood and wiggled my ass a little.  The hip-hop instructor was standing right in front of me and well..  he went hard for two hours, one for zumba, and the other was an hour of hip hop.  Same for my sister.

Even while I type this, though, I remember how I felt.  Not physically..  it is a given I was struggling.  I was watching women twice my age take me to school.  I took dance for 18 years.  FMS has stolen a lot of things from me, and while I like shaking my ass a little and doing what I can; like so many things that FMS has stolen from me, I was incredibly heartbroken to realize just how far gone I really am.

Yes, it was great that I tried, and did the best I could.  However, I mourned the dancer that still lives inside me but cannot get out.  I thought that mourning the life I used to have would be a quick process and I was feeling well over it.  I thought, so I lost these things, so what..?  I took my own advice and I tried new things.

Thing is, I found them.  I can still wire wrap beads and plan to start selling them shortly, as well as my articles being published: Wild Woman article I wrote, as well as another Wild Woman article; which are the best things to happen for me in a really long time.

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Even though these amazing things are going on, I find that I still crack every now and then.  I have accepted that this is how my new life will be from here on out, but that doesn’t mean that it doesn’t suck donkey dick.

Here is where I want to add some platitude or cliche that would make it all better, but the fact is… it is entirely up to you whether you will be miserable, or okay.

A lovely friend told me once that she is ok, and that ok is good.  Remember that.  There are times when you are going to feel beaten, broken, lost, and in pain..  So the days when you are ok, BE ok.  Ok is a great thing, that is simply our reality.

I don’t think it sucks at all, because that does nothing for me … for something to suck.. Save that energy for something positive, keep those negative thoughts out of your brain; say fuck it, do what you can, and BE OK.

For example in the past few months my son has wrecked our car, a man pulled a gun on my family and I threw myself in front of it (resulting in pretty major PTSD), I have had to go to court, I have had to take a break from school (which is financial and it’s killing me), and I had to put my dog, my love, whom I had for 13 years to sleep forever.  Every time I think of him, I cry.  It hurts so much.  My house is old and we cannot heat it when it drops below 40 it gets unbearable.  I am sitting in my recliner with my Sophie Dog curled up on my lap, a scarf, hand warmers, and a heated blanket.

I should be miserable…  a lot.  The old me would have been miserable.  Now I realize that I have what I need, my computer which is my connection to the world, a heated blanket, a husband who is at work to support his family, two amazing teenage sons, well, the list is long.  My point is..  I have it real good.  I continue to fight….

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Things are far from ideal.  For example, I am about to piss myself because I don’t want to upset my lap buddy, or have to sit my ass on the toilet seat that feels like a block of ice.  These are minor issues..  I am OK and OK is good.

Bottom line is this, no matter what, our bodies are different for now, Doctors don’t know how to fix us.  Shit, they really don’t even know what causes most of this shit.  Mourning your old life gets easier with time, but like anything that you mourn, it never really goes away, it just hurts less.  Warriors all we can do is try to smile, laugh and Live Love and Fight like the warrior you are.