Tag Archives: brain fog

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.

 

 

 

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.

 

 

Vibrating.. you Know you do…. My Theory…

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Vibrating..  you Know you do…. My Theory…

Vibrating.  I am constantly doing it now.  I have been since the fibromyalgia got worse.  Here’s the thing, though..  I have given it a lot of thought.  I have meditated on the answer.  I have come up with an explanation for the vibrating.

See, we are all made of the same thing, atoms.  We are made up of matter.  I didn’t pay a super lot of attention in science, but I know that matter,. in and of itself, moves around.  Fibromyalgia makes us move around more quickly than we can handle. It has been proven scientificaly that our brains and the way they function can all go back to mathematics.

The article talks about how matter interacts with the environment that is around us. It causes us to vibrate on levels that are way too high for most people. and it messes up the other stuff in your brain, and you probably have a short fuse, or a limited capability for simple problem solving, or giving directions..  I literally got lost while I was holding a Tom Tom.  I no longer have to give directions.

Click here to read the entire article.

l Click here to read the entire article.

I know that how I feel when I am beside my creek is entirely different from what I feel like when I am sitting in a crowd of people waiting for a play or concert to start.  In those situations I generally require headphones and slumping into my seat, so as not to be noticed or spoken to.

It isn’t because I don’t want to talk to them, it’s that the likelihood of making sense is very very low at this point and I generally sound like an ass hole if I try to communicate.  That, or I forget everything I should know about that person to make any conversation at all nearly impossible.  Frozen and awkward; horrible. We have all been there, I am sure.

Thing is, I think that all the neurotransmitters in our brains are getting adrenaline dumped into them because our Sunstance P is broken…  well they are getting all these links, and things are firing that shouldn’t be.  Rather, things are firing in our brains, that simply only fire in a “regular” brain when they have a true adrenaline rush.

I almost forget what a real adrenaline rush feels like.  I have certainly forgotten what “normal” feels like.

When I flare hard it feels like my eyeballs vibrate.  I have found that if you can work on connecting yourself to the earth again.. If you can try to meditate. Concentrate…  NOT on how you are feeling..  you have fibro, it hurts, but it isn’t doing any true damage.  Learn to take it by the hand and get to know it.  It is part of your life now.  Accept that and work on you.

Find yourself under that blanket of protection that you have draped over yourself. Remember, it is your brain.  Take it somewhere slow.  Make it slow down.  It might take some work to get used to it, but trust me, it helps so much.  Move at the vibration you find that is comfortable to you.  Work with a Reiki coach, that changed my life.

I also tell myself that I have a super power.  I am so connected to everything that I vibrate with it.  I would make a lousy actual superhero, as I can’t run..  like at all…  but I can walk into a room and know who needs my help, and that seems like a wonderful super power to have.

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?

Forget Everything you Thought you Knew… Inspiration

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Forget Everything you Thought you Knew… Inspiration

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

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

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

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

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

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

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

They started out looking like this… all green…

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

So I painted the pots..

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

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

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

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

Death Preferable Over Fibro Suffering?

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Death Preferable Over Fibro Suffering?

I have seen way too many posts this morning where women are talking about killing themselves in roundabout ways, but still..  Don’t let this condition be the reason you die.  You can live with this.  You just have to find your new path, like I did.

I know that some of you may be alone, and see no other way out..  Here’s the thing about that… What do you prove by giving up?  Also, you are going to let this shit make you give up?

Fucking fight..  we fight..  I fight.  I have to.  I have found a new path, it took me 6 years.  It is hard to step out of that misery ball and make a life for yourself, but you fucking damn well can do it.

All the warriors need to stick together.  I am writing papers, and soon I will start to get media attention to our cause, I just need to figure out how first.  But you can bet your ass that I will.

One last thing in this post… There are people who are dying who would gladly take a lifetime of pain if only they could live.

You absolutely have to remember that even though fibro isn’t caused by depression, our thoughts and our state of mind have a lot to do with how we feel.  If you feel like all is lost, it effects the fibro nerves and effects how you feel.  This is true..

Think about when you are laughing…  You can bring the severity of your symptoms  down just by changing your thoughts, dig yourself out of that bubble, no one is going to do it for you…  But you can do it, even alone..  maybe especially if you are alone..  I cannot count the number of times that my sons have triggered a flare…

Life is still what you make of it..  I started by not thinking about my pain in an inhibitory thing.  I started baby steps out of the bubble of misery that I was in.  I failed..  a lot..

You should really watch that if you haven’t…  it’s a FAIL….  It happens, those sneakers cost me 130 bucks, years ago..  but still, they were mint condition…  now they smell really bad..

Loss?  Shoes, pride..  Gained?  My first video for creating my VLOG here..  and a funny story as well as a funny video on Youtube…

Life is what you make it, even if you have to make it around this condition.  It is possible to get to a happy place, at least a place where you are OK..  just follow along, keep reading my blog because I am still working out a timeline and figuring the steps that I took to get here.

Don’t give up and don’t be selfish, because suicide when you aren’t dying?  Selfish..  period.

Join the fight, help others however you can..  it means everything.  Don’t give up, get up, don’t think about what hurts, just get up and do one thing today that you haven’t done in a very long time.

Tough Love and Broken Hearts

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Tough Love and Broken Hearts

When I got sick, I got really selfish for a long time.  I didn’t mean to.  It truly wasn’t my fault.  The rug had been ripped from beneath my feet and it took me years to even find the edge of the rug again, let alone step back on it wearing flats and presenting as a new person.

I knew that I was selfish, and I tried.  I only missed one school thing, and that is because I was in surgery.

I am the only female in the household.  I “get into trouble” when I show emotions.  Because I live with boys, they assume if I show emotion that I am acting like a crazy person.

This is an issue that I still deal with.  We have come really far on a lot of other stuff, but this one thing..

Last night when the cop was here and I found out that I was being charged and the guy who had a gun on my family was getting charged with disorderly conduct.

To read this story click here

This is an absolute mockery of the judicial system.  Apparently, you can point a gun at someone’s head with your finger on the trigger threaten to shoot them dead in the middle of the street and get a citation..  I was furious for a few minutes.  I was literally holding onto my head when she told me, because of his actions I have PTSD on top of the fibromyalgia.  I can’t move my head and I have no way to go to a Doctor.

Interesting to my sociology/psychology brain is the fact that I thought PTSD came from remembering the fear of the moment.  I could not have been more wrong.  I can’t imagine what a soldier must feel…  but fear isn’t the driving factor for PTSD..

I wasn’t afraid when I was throwing myself on the gunman to protect my family… But I have symptoms since the other night.  I can’t stop seeing the hole in the pistol he had pointed at everything I love.  It isn’t fear…  it’s something else.

I digress, I got fucking pissed out of my head and I slammed a door and went outside.  This nearly turned into the same argument.  My husband angry with me because I “threw a fit” fight…..  I showed a little emotion.  I was getting a talking to while my son..  the entire reason all of this is happening…  is outside making out with his girlfriend.

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I almost took the bait, so to speak, trying to explain my behavior and asking for forgiveness.. I said STOP, this is not something I did, you are giving the talking to, to the wrong fucking person.   FUCK THAT…  I am not a crazy person that snaps like a dead branch.  I was that person.  My boys hated it..  so I stopped. There are many legitimate things trying to piss me off daily..  it takes a lot to break me.

I had just found out that the man that nearly killed my family because of a broken fence is getting a slap on the wrist… I was pissed out of my head..  YUP and don’t you dare sit here and tell me about how there is a better way..  fuck that.  If you can’t stand for me to get mad and slam a door every once in a while then it is time for me to hit the road, because I have an Irish temper and when the situation calls for it I might slam a fucking door.

After I came back in My son was sitting next to his girlfriend making sure that she was okay.  She wasn’t involved in a thing..  she was just here when I stormed through and threw my prayer beads and went out the back door.  I said, “Yeah, I’m fine thanks for asking..  ever..  at all” because he needed to check himself.

He hasn’t asked me if I am okay since if fucking happened.  I don’t know if it is an age thing, or a learned behavior that will never go away but he has no respect for me at all.

People here, who know all the issues he is giving me and all the things he has done and the way he has treated me after have all told me to kick him out.  He has nowhere to go, I can’t do that.  However, this broke me.  My house is tiny, but I am fucking beyond hurt, sad, and angry.  He needs to be kicked out.  That said, I hate that it is called the silent treatment..  It is more than that.

He told me last night that I only made things worse, that I make them worse every time.  I jumped on a gun for him two days ago, after he was where he wasn’t supposed to be and hit a fence..  and I make things worse?

He doesn’t exist in my universe right now.  At all.  I cannot kick him out but I am all the way done.  It makes me sad, but I just can’t.  I am a fucking Psych major… I should know how to deal with this..  I suppose I do know how…  DONE…  you can stay in my house but don’t ask me to acknowledge your existence.

Yes, this will be possible, he has places he can go.  I have places I can go.;.. DONE

I would have packed my own bags and left if my husband refused to hear me again.  Luckily he didn’t.  I was ready to walk.

My husband stood up for me, and pointed out all the shitty things he had done and said since the gun thing..  he is a wonderful man and I love him so much and I am so glad that he finally heard me.

This is a great way to hold hands when you have fibro.  Human touch is essential, for us to be healthy...  hold hands, this way doesn't hurt

This is a great way to hold hands when you have fibro. Human touch is essential, for us to be healthy… hold hands, this way doesn’t hurt

Grab your gonads and stick up for yourself.  Love yourself enough not to be everyone’s crazy bitch.  You aren’t a crazy bitch…  find some peace, be at peace and write off the people that can’t get on board, no matter how much it feels like your heart is ripping in half.

I guess I should clarify, since I use many words to express myself, is this…  I know that you feel shitty because you aren’t the person your children and spouse knew before.  I know it feels super shitty when we hide because we just can’t take it..  Don’t let guilt eat away at your strength.  You are strong, at least you once were.  I got it back.  I did it, I stuck up to my husband and I am sticking up to my kid.  I am telling him why I am treating him this way.  I don’t know any other way to get my message across.  A few weeks at another house?  Of course not.

Hid dad did let him know what an ass hole he was being.  Pointed out that I did, indeed throw myself on a gun to save his life, and he says I made things worse.  Broken..  I am broken..  My heart is.  My strength is still with me.  Hold onto that strength with all your might…  You are sick, you should not have to make everyone else feel better at your own expense.  Stay strong, hold on…  you fucking got this.

Doctors and Fibromyalgia is a bad Word

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Doctors and Fibromyalgia is a bad Word

My Aunt thinks she has fibro because she has a sore back, and since her doctor cannot find a real reason for the pain, he says that it is FMS.  She is a dentist assistant and spends her days bent over patients..  Two things:  ONE, I don’t wonder where her back pain comes from and TWO no way could I do that work, even for one day because I DO have FMS and it is raining today.

My fingers look like hot dogs.  They have passed right by sausages and they look like hot dogs.  My arms and legs feel like I have entered a different atmosphere and they are heavy, like lead weights, like there is more gravity.  I have pain in my belly, I don’t know if I am about to shit my pants or start my period.

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I remember when it was new and I would try to find words to tell my husband what I was feeling.  What it felt like when my body would really flare and it felt like my skin wanted to catch fire and fizzle off.  One of the reasons I keep this blog, husbands, partners, kids…  this is not made up..  I know you can’t see a thing, but inside is chaos.  It is in our brain, so if that is what you mean by “all in your mind” then you are right.  However, I know that is not what you mean and so does your loved one.

There is nothing harder to hear than the people you love most in the whole world telling you that this thing, these things, that are taking your life from you are “all in your head”..  I am still working on getting over my anger at being told that by my husband for years.

NONE of the pain with FMS makes any sense.  Only someone else with FMS would understand that during a conversation with me I might skip out and forget words.. or totally forget what I was saying in the middle of a sentence, they tell themselves that I am high on “the pot”..  What they don’t know is that if I want to complete a sentence I have to be on that medication.

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Besides all the issues that we have with our doctors, I also think they are the problem and they have made our suffering easy to dismiss and ignore.

Every single person who truly has FMS knows that I advise against telling ANYONE that you have fibro.  You tell them you have a “neurological condition” and this is because when you say fibromyalgia to someone their eyes glaze over.

They think they have heard it all before.  They don’t understand that once your symptoms are bad enough, it takes your whole life from you.  They think about people like my Aunt, who’s Doc says “Meh, I can’t figure it out, must be FMS”  NO, NO it isn’t….  it took me four years to get diagnosed by a rheumatologist.

I insisted to him that I was not depressed.  I know depression well…  and even though I tried to stop my heart with my mind every day for years, I wasn’t fucking depressed.

I used to dance.  I used to make jewelry and sew.  I used to be a DJ, spinning real records..  I cried for the loss of these things.  I cried because I was losing the ability to do every single thing that I love.  I cried because my family thinks that I am a lazy pothead.

They don’t care that I use cannabis because it is better for me and for my pain than losing my soul to any opiate, that won’t work anyway.  FMS patients have broken opiate receptors, which is why such medicine might make you not care, but it isn’t helping your pain at all, nor is it helping you sleep.  It is simply stealing your life and your soul.

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Don’t despair warriors, you are not alone and I attend university online to get some letters behind my name because if you reference back to Fibromyalgia 101 I have studied tests that are being run, not in this country, but in other countries where they aren’t worried about hurting Cymbalta sales.

By the way, beware the anti-depressant.  FMS is NOT caused by depression.  Again, please reference back to Fibro 101.

I have to end this here, just my thought of the morning..  I have those every once in a while..  Hang in there warriors and be amazing to yourself today.