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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.

 

 

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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.

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.

What it is Really Like to Have Fibromyalgia

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What it is Really Like to Have Fibromyalgia
So, how in the hell are we supposed to explain to our loved ones just how sick we are, if we cannot think of the words to describe it all?  FMS is widespread pain.  Other people go to the doctor and they point at the chart and asks us to give them a number between one and ten for their pain.  They get to do that.  For example, “my tummy is an 8” or “My broken arm is a 7”.
FMS warriors ask themselves..  “which pain?” Because our whole body hurts.  I told my doctor that we should change it to “How bad does it all suck today?” and he agreed.  I know that we get frustrated with our docs, and trust me, they are just as frustrated as we are.
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What does it really feel like, every single day, to have fibromyalgia?  Millions of us suffer from it.  American doctors still want to tell us that it is caused by depression; this is incorrect in the extreme.  That is for another post though, this one is about what it is really like.
First of all, we wake up.  If we have slept at all; insomnia is one of the main issues with fibromyalgia.  I will switch now to what it is like for me, because this is the one that I know the best.
After waking I take inventory of all my bits.  I figure out if standing up is going to be a good plan at this point.  If standing seems possible I force myself to an upright position.
When my children are at home I feed off of their energy and before I even have a chance to think about being calm I am bombarded with TESTOSTERONE and angst.  I have learned that when they are here, I must be extra careful and I MUST speak up about the things that displease me.  If they want to get mad, they can go to their rooms.  I am the one suffering here, I don’t ask them for much, but if they want to pull some teenage douche-baggery I will insist they go away from me to do that.
Long ago I stopped feeling guilty for being a “sick mom” because I figured out that I am their mom.  I have to deal with what I have, and as long as I try that is all my husband and sons want.  Guilt is a huge part of this process and that means that we are not being fair to ourselves.  Love the new you, and those around you will do the same.
Okay, back to after I wake up.  I make my coffee.  This is an issue for several reasons.  First, my arms are all strange and numb and they don’t want to listen to my brain; and second those damn filters are almost impossible to pull apart.  I have cried only twice..  but it is so frustrating when all you want is your coffee and you can’t even get a filter out.
If I manage to get a filter and I don’t break the carafe the coffee is done and I take my morning pills.  I go to smoke my morning cigarette and play Puzzles and Dragons on my phone until I feel like I can check all my bits again.  Oh, go ahead and judge me for smoking cigarettes.  I have tried to quit.  I won’t give any excuses; I keep failing to quit.
Now, this morning I woke up with an interesting new pain.  In both of my hips.  I walk a little bit like I am stuck to a chair and trying to walk..  that is the shape that I am in when I am walking.  Hey, maybe if I did glue a seat to my ass I would be able to rest easier.  Obviously, that was my sad attempt at humor.
Now, my legs and feet are very similar to my hands and arms.  They feel like they are asleep and if I don’t watch them when I am walking they cannot be trusted and like my arms which also cannot be trusted seem to have a mind of their own and they must be watched carefully.
If I don’t intensely concentrate on the task I am doing it would be a disaster.  I am not talking higher mathematics or physics here, just my arms and hands; my legs and my feet.  If I don’t concentrate I will go down, I will knock things all over the place.  I am HULK SMASH if a bug lands on me and I didn’t see it coming.
I startle very easily, like a deer in the woods.  If I could actually walk, I would be kick ass if the zombie apocalypse comes…  alas, in my current condition, I shall be the distraction food so the others can get away.
I accept this.  I am okay with the fact that for some reason I am one in over a million people that have this life stealing disorder.  I encourage readers of my blog to tell people they have a neurological disorder.  This is not a lie.  When I tell people I have fibromyalgia they immediately tune out.
Screw that mess, neurological condition, and then they will try to help you instead of looking at you like you are out of your ever-loving mind.
The hardest part, for me, was grieving for the life I used to have.  I was a dancer, I was healthy, I was a retail manager, I was thin and in shape.  Then one day I noticed that my arms were getting tired very quickly when I held them up for too long.  Then I started to get shooting pains in my back that were so extreme I would call out and fall down.  Then I started doing the fibromyalgia shuffle walk.  It was not long before I had to quit my job.
I thought I would be fine.  I thought that I could sell my jewelry that I was making, the purses I was sewing, or the bracelets that I was making.  Then my hands went numb.
I lost the ability to do every single thing I loved.  I grieved those losses.  Like any loss, though, one must pick oneself up and brush off the dirt and using baby steps get to know the new person that has developed as a result of fibromyalgia.
Do not get me wrong here, I grieve all the time for the things I no longer have.  However I only let myself have a few minutes of that before I force myself to write.. create some earrings (which I can do), or walk my spiritual path, or play puzzles on my phone, or binge watch a silly show on Hulu or Netflix.  I do not recommend the last one, it doesn’t help the brain exercise like other things you could do.  Don’t get me wrong, I watch a lot of both.  Some days you just have to disconnect.
I can’t cook myself lunch, because I will forget that I am cooking something and ruin it.  I also have to be very careful of what I eat when here alone because swallowing is very difficult.  All part of the melange of things that are FMS.
I have gotten vertigo twice.  When people talked to me years ago about vertigo I didn’t get it.  I thought, so you get dizzy…  I get dizzy if I spin, what is the big deal?  Well, I can tell you it is life altering.  The entire universe slips sideways and upside down.  It feels like you are rolling down the hill in a barrel, except you are laying on the floor.
It has caused me to be afraid to drive or even go out alone, lest it happen and people panic and call an ambulance, or Goddess help me,  I get into a car wreck because I break and can no longer operate a vehicle..
If you are a warrior and you are fighting these battles, you must find your new purpose.  Getting to know yourself in your new body is the first step.  Today, for example, I know the hip pain is new and I am having shooting pains in my back, they are so intense I yell out.  My kid is here because of the snow..  he knows that when I yell HELP that I need a person.  If my noises are eek, ouch, shit, or any other number of phrases; he knows that I do not need assistance, as it is only a pain from nowhere.
Every single thing is a challenge.  Taking a shower is a challenge.  My ears ringing for four years straight…  challenge.  Falling all the time..  well I know those are coming so I mostly make it down slowly.  Getting back up can be a challenge, because my arms are as sore as my legs, there is nowhere someone can grab me to help me up that doesn’t hurt.  I roll with it now.  I cannot change it, I must make the best of things.
My mental state is a challenge and controlling the urge to scream and rant all day comes with a price.  This condition causes you to concentrate on not letting yourself feel the war that you are waging with your own body.  When the kids get home and bombard me with questions, or complaints about their days I shut down almost right away.
It is like a tidal wave of information and my brain just says NOPE.  My kids are older and understand that when I grab the bridge of my nose it means to slow down, that I am thinking.  I don’t know how to help those with younger children..  but you have to work and figure it out.  I did and it helps a lot.
Do I cry and want to give up?  I had one of those days yesterday.  I thought I was a drain of resources that should go to the healthy people in my family.  It makes my husband really mad when I say that out loud.  I am finding my worth, that is a challenge as well.  Finding my worth here and in the outside world, no matter what, that is essential to my growth.
Finally, connecting to the earth’s energy.  Aligning my chakras daily and meditating.   All of these things are a challenge, but what is the worst that can happen?  I promise you this works.  It is how I slowed down.  Reiki, and grounding myself as often as I can.
I am already in pain all the time..  I take baby steps and remember, always remember, that I am worth something.  I can help people.  I have a husband that loves me in spite of all my crazy and two amazing kids.
Following is what I wrote when I was flaring really hard.  In my own words, in the middle of a flare I wrote this.  Please, let your loved ones read this as well.

Inside the Mind of me..  right now

I write this with great speed, because I shall lose my train of thought any second.  Inside my brain, right now..  I reset every 30 seconds or so.  It is like a bad acid trip all the time.
 
My skin burns, and I wonder at the fact that it doesn’t feel hot to the touch.  I wonder if I just stepped in piss or if the tempurature is different because my hands and feet are numb.

Typing is impossible.  Thinking is impossible.  I must rest for the game later.  I know I am not doing my homework and I cannot bring myself to care long enough to push myself through.  I remember that I forgot..  Then I remember that I am forgetting, then it starts back over in my  head.

Shaking hands, quickly now..  before it is too late and I have done a master re-boot.  I wonder if I get tasered..  I wonder if it is that simple
 
Living your best life.  fighting the darkness..  fight on..  live to fight another day.  Wonder of wonders..  I tried it..  You cannot stop the darkness..  You learn to live the darkness, balance the darkness.  No rest, no sleep..  we fight.

Wait..  hang on..  what was I just saying?

Drowning in Guilt… The Chaos That is FMS

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Drowning in Guilt… The Chaos That is FMS

I spend a lot of time on fibromyalgia boards.  I spend a lot of time researching this condition and what causes it.  My goal is to be a voice for the voiceless.  My goal is to help.  Try to put into words the things that I do to make life not only bearable, but pretty damn good.

Lately I have noticed a trend in the fibro groups I belong to.  Women, ready to give up.  Women saying, how can I do this for the rest of my life?  Women saying, won’t my kids just be better off without me?  Women saying they just don’t think they can hang on for another second.

This is nearly unbearable for me to see.  Unbearable, because I know exactly what that feels like and it is a nightmare.  I am here to tell all warriors out there that there is another way.  There is always a work around.

Guilt.  Guilt is the thing that is holding us back.  My kid, at one point, as well as my husband both told me that I ruined everything.  That was my rock bottom.  I knew that in a way, they were right.  Fibromyalgia messed everything up..  especially me.

See, it wasn’t me they were mad at, but it is how I was handling being sick.  I had to stop trying to make them understand and focus on myself.  I am still a work in progress, but it has certainly been a while since they hurt my feelings, or made me cry.

So what changed?  Did my FMS get better?  Absolutely not.  I changed.  I came out of my room.  I stopped being afraid of interaction, because through interaction with my family I was able to start realizing what, exactly, I am capable of.

I admitted to myself that FMS is a reason I cannot do certain things..  FMS cannot be the reason that we shut our families out.  Don’t make them understand, just take the time to hang with them and they will get to know version 2.0 while you work on finding it.

I know that I have a short fuse and I startle easily.  I know that when I am in public I might skip my words all around while I am trying to explain something to a gas station attendant, or a cashier.  When I say short fuse I am talking about interaction with my son.  My 18 year old and I have struggled the most.

We have normal mom stuff, then add a sick mom to the mix..  We have had a hard time.  I hid for so long that they grew up a bit and I missed a lot.  I didn’t let the guilt from that weigh me down, I just used those feelings to get out of bed and TRY.

I have had to take several breaks from school, as I started to fail at things that I was working really hard on.  School, sociology and psychology are generally easy for me to learn but I started to fail and I was giving it all I had at the time.

I owed it to everyone I love the most int he world to pick up the pieces and try.  I have really bad days still.  I have days where I cannot get out of bed, I have days when my memory resets every 30 seconds and I cannot finish conversations.  All this still happens.

Guess what I figured out one day?  It is predictable.  YOU are predictable.  FMS is predictable.  I am not saying that flares happen on a schedule, or that you will know whether or not you have the energy to make it through the store…  Predictable, though.  You have to let yourself get to know it, because it is not going away any time soon.

It changed something fundamental in me the day that I figured that out.  I even remember what happened.

We live in the country and there are often random gunshots.  We live in a valley, and depending on where the shooters are, it sounds really close, even if they are far away.  I heard a gunshot and knew that my oldest was outside.  I went tearing out of the house, I was halfway to my kid when he met me and said, “I am okay mom, I knew you would freak out so I was coming to tell you I am okay”

It was like someone flipped a switch.  I feel like a walking ball of chaos.  I still do.  But realizing that day that while I feel this..  no one can tell.  The only time anyone is going to understand how you feel inside is another FMS warrior, or another person with chronic pain.

Stop trying to make them understand, before you have even figured it out for yourself.  As I said, I am a work in progress but I am more now.  I didn’t get better, I won’t get better..  But I am okay.  I push myself every day to love myself and stay strong.  You don’t have to lie about how you are feeling..  tell them when you hurt, tell them when they are are too loud.  It’s okay.

Most important of all though, is not to let guilt bury you.  Guilt over not being able to go on roller coasters, or guilt because you have no money because mom is no longer making a living, guilt because you overslept..  All of it is pointless.. absolutely pointless.

We have a disease that changes our whole life, but if you do your best to embrace the changes those around you will find it much easier to follow suit.  WE understand how you feel.  You are not alone.  You are never alone, there are over a million warriors.

Don’t be a statistic.  Find your best life.  If I did it, anyone can do it.

Live, Love, Fight…  and fight hard.

I am not a Suicide Bomber, I am a Mother

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I am not a Suicide Bomber, I am a Mother

I am not a suicide bomber..  but I am a mother.  It is kind of the same thing.  In one, you strap a bomb to yourself and you die for a cause, you give all of yourself to the cause and you lose everything including your life.  Being a full time stay at home mother who has given nearly 18 full years to two humans has taken me away from myself.  I have been blown to bits in the wind, because now they don’t need me and without that job, what else is there?

To be fair, I have had severe fibromyalgia for 6 years.  It is tough overcoming having a sick mom.  I am digging myself out of a hole they can’t even see is there.  They know that I seem better, but of course they may never see the work I am doing on myself.  They might not even notice because they aren’t in a war with their own bodies every single day.

Much like a bomb would, they sometimes rip my heart out.  I literally threw myself on a gun to protect them.  This wasn’t even a week ago.  I am so used to putting everyone ahead of myself.  I was to be the only one shot that night because meh…  who cares about me?

I was just talking to my best friends, in a chat we have had for months and months on Facebook.  They reminded me that while it was what every mother would have done; it was a matter of myself feeling like the one with no worth, the one the world could do without.

I was upset, I am very scatter brained.  Then I realized that I had done it.  I had lost myself, because of guilt over an illness that is not my fault.  That doesn’t make any damn sense does it?  I did nothing to get Fibromyalgia, doctors don’t even know where it comes from.  Yet the guilt I feel has driven me below ground, feeling like my life is unimportant.  No…  no way, we gotta work on that one… IMMEDIATELY

I have worked hard to overcome this condition, I don’t care who notices, I don’t care that they don’t notice the work I have done on myself.  I simply have to remember that I do count.  That I am someone.

I need to create my own self worth again.  I need to find it.  I blog for fibromyalgia because I have figured stuff out..  I help people.  Every single day.  That is worth.

I say I hate money, yet because I bring none in, I let it steal my sense of self-worth.  I hate money and I don’t care if I never make another dime. It certainly should have nothing to do with my value.

Self-worth is knowing that you have an important mission in your life and maybe all mothers feel this ripping feeling when their kids are 18 and acting like ass holes.  Maybe all moms feel like, “holy shit, I gave my life to that human and they are hurting me and breaking my heart, I must have done something wrong”.

I am not a suicide bomber and I am not a pushover.  It may take a while to feel like I am worth something, but work on it I shall.  Watch out world, this bitch is just getting started.

Every mother needs to keep a locked box in her head, where she keeps herself.  Don’t lose yourself to your job, or your kids, or your partner..  It is really hard to get that self back once you let go.

 

Live Your Best Life, Learn who you are now…

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Live Your Best Life, Learn who you are now…

Hello warriors.  I think this is a post that I have been waiting a long time to write.  I have a lot of things to say that are pertinent whether or not you have Fibromyalgia (FMS).

First of all I have a story to tell.  My whole life I have been worried what people thought.  Even when I said I didn’t care, I was able to hide the fact that I cared, but I still cared very much, so much that it would almost be the only thing I would think about for a while.

After the FMS got so bad I was so fucking hurt because everyone who was supposed to love me thought I was insane, or faking, or just being lazy.  It killed me that people thought that.  I would spend days wondering why.

Why won’t my mom help me get to the doctor?  Why are they saying all these awful things about me?

I found that this is a total waste of time, and you are going to be sad because of what someone else thinks?

NOPE…  WRONG, you have a disorder that has stolen your life.  It cannot be understated how devastating it is to lose your ability to do nearly everything you loved.

No one will understand this, except for someone who has been through it.  FMS is a special case because there are so many things that people simply cannot understand, hell I can’t make any sense of it.

Whether you are sick or not it does absolutely NO good at all to worry what others think.  It is a process to get to a place where you truly don’t care, but I am 38..  it took me this long..  I had an amazing experience yesterday that taught me better.

We went shopping at Walmart, which is a trial when you have FMS.  I had a great time.  I thought I would have to use the auto-cart that you ride around, but I made it.

When I speak about the zombie couple at Walmart that just look like they are miserable nearly everyone should know what I mean.  It is chaos in the store and they were with two small children.  Their little girl still had her Hallows Eve costume on.  She was wearing a bright blue wig.  I should post a picture of me here…

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This is what I look like from the back.  Of course, yesterday I was a bit less….  fluffy….  however, I have baby dreads and they are a mess most of the time.  I have some wrapped and it is a colorful mess and I love it.

This pertains to the couple in Walmart because when I walked by I said “I want blue hair”.  They turned to look at me, I could see out of the corner of my eye.  They were miserable.

 I passed them and they turned to look at me and saw MY hair.  They started laughing at me,  really loudly.  Not giggling, laughing and leaning on each other and having a beautiful, unexpected moment together because they were making fun of me.

I waited for the pain.  That pain that I used to push way back, yet still obsess over.  I waited and it never happened.  I smiled.  I thought it was amazing that they were laughing together.  I didn’t care one whit, for the first time in 38 years, that they were making fun of me.

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They were making fun.. those are the words I took from it.  They were laughing with one another.  Sharing a moment.  I am so happy that I was the catalyst for that.  Oh yeah, and by that time I was doing the FMS shuffle walk…  I will have that video posted here later, my version of the “shuffle”.

One of the first things I learned about FMS was that it changes how you interact with people.  It changes the way that you speak, because words can be so hard.

If this happens, simply say bear with me, I have a neurological condition.  (1) it isn’t a lie and (2) if you say fibromyalgia people automatically ignore your issues, they just do; it is a shitty word.  I have tried this several times and it works like a charm.

Now, love who you are.  Replace words if you feel like it, with other similar ones.  Just become yourself.  Stop hiding behind FMS..  start to live..  get to know yourself again.

The new self..  The one that you are now.  So, you lost the ability to do some shit..  there are a million other things that you can do..  you push yourself.  If you fail.. that wasn’t your thing.  Simple as that.. Move on to the next thing.

Cry whenever you want.  Not every day, but during this process you are going to fail and you are going to be sad and you are maybe going to cry because it is frustrating as all hell..  But you can do it.

Don’t think about what hurts, unless it is knocking you to the floor. If you do go down, do it slowly and laugh at yourself.

Don’t wonder “is that the fibro or am I dying?” because YES it is the FMS and that isn’t your focus anymore..  your focus is you..  stepping out of the box you have yourself in.

You will still have things you cannot do.  My goal is not to cure you, that is impossible.  My goal is to help you understand you don’t need that box.

I have told my family that I am no longer going to be the pushover I was.  I was allowing my son to run roughshod over me because I didn’t want to fight and get upset.  Unfortunately for him, those days are done.  That is my most recent step up.

I have made some stuff.  Earrings..  Necklace.  I thought that was gone, The ability to make them, and even though it takes me 3 times as long as it used to and it hurts like hell..  I do it because I have pain anyway and it makes me happy.

Now, I shall have to speak of the cost of becoming yourself.  Most people develop their sense of self in relation to what others think.  It is science, it is how we form our schemas of ourselves and those are hard to take apart.

That said, that isn’t even the cost.  For me the cost was extended family turning away from me, refusing to speak to me.  I don’t miss them.  I never really did.  However, that can be too steep a price for some people.

I do wish that they would come see my son be the drum major for his whole band at high school.  Or come see the amazing mechanical work that my other son is able to do.  Or maybe come to the Sherlock play, where my kid is cast as Moriarty.  I am the one they don’t like, they should never take that out on my boys.

Yeah, the one in charge?  That is my kid.

Yeah, the one in charge? That is my kid.

Don’t let FMS make you scared to be yourself.  I have dread locks and I openly act in the marijuana reform movement.  I am broke most of the time, and I have this shit that makes it so I walk fine for a few minutes, then everything goes all to hell.

This reminds me of the “stop-watch” thing I do.  If I am going somewhere I have to time my meds of course.  I also have to TRY and figure how much time I have before my legs give out completely.

This is impossible.  I have tried for years.  There is no set time.  There is no watch and there is no way to know when everything is going to go all to shit.  What really sucks is when my legs and arms go at the same time, it makes it tough to get back up.

One last FMS thing that I thought about.. Words are as exhausting as running up a hill.  I think this might be on the hardest things for people to understand.  If you have an argument with me, it is as bad..  or worse… than if I was doing a marathon.

When I go to plays and music things, while I wait in my seat I listen to music on my phone, clearly ignoring everyone.  That way I am not done in before my kid even gets on stage.  Don’t ever be afraid to live your best life, no matter what your new version is, don’t be afraid to live it.

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FMS takes your life.  It steals it.  You are forced to forge a new one.  It will be one of the hardest things you have ever done.  You don’t need the haters to understand, you just work on you.  Live your life, love your life, it can still be a great one.