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.

 

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.

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

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

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

So, stay tuned and I will see you soon.

 

 

 

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

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?

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

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

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

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

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

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

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

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

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

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

 

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

On Women and Magic

This one is for the Ladies

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

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

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

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

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

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

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

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.

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

RULES

BE GENUINELY HAPPY

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

GET OUT OF YOUR HEAD

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

KEEP IT SMALL AND SIMPLE

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

REMEMBER THE BRAIN FOG

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

USE COMMON SENSE

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

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

REMEMBER TO LIVE OUTSIDE YOUR OWN BODY

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

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

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

This is NOT hard

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

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

Suicide…? WTF?

I have always thought that I was impervious to silly antics like suicide or shaving my head or..  I don’t know…  all that “crazy” shit that only insane, weak people do.  I always thought that people who committed suicide were selfish.  I could not have been more wrong.  They are in pain and out of touch, I barely recognized what I was doing.  There is no such thing as insane, and I have never met stronger people than those that I met in the pysch ward where I went after my attempt.

I took a pair of scissors to my wrist Friday…  in the deadly direction.  Luckily the scissors were dull and I only managed to barely open the skin. It was simply luck that the scissors were dull, if they wouldn’t have been, I would have been in real trouble.  As it was I scared myself enough to go to the hospital right away.

I certainly didn’t wake up and decide that I had lost all sense of myself and it was time to die.  It was a months long process of losing touch with myself.  Months of trying to come to terms with devastating information about fibromyalgia (My brain is aging 3.5 faster than healthy humans).  Months of feeling out of touch and like I was drowning.  Knowing you are going to lose your mind is a special kind of torture.

See, it is not abnormal to fantasize about killing yourself.  When I was depressed and I was first afflicted with fibro I fantasized constantly about how I would do it.  I never meant to do it.  At that time I never would have tried..  This time I tried.  Maybe I didn’t try very hard, but I tried and that was enough.

I couldn’t see a way past the excruciating nervous pain.  I resigned myself to feeling like shit because I do have fibromyalgia.  I thought I was doing the right thing by accepting the cards dealt to me by fibromyalgia; accepting that this was it.

I have fibro and that will never go away and I will never feel human again because I have this condition.  That said, I am damn sure not letting this bitch win.  I am not always stronger but dammit I will fight as hard as I can every single day.

I realized on Sunday morning when I woke up in the psych ward that I could do better; that I could be better.  It is up to me.  I know that there will be days that I feel like total shit.  That doesn’t matter nearly as much as I thought it did.

Every single day is a chance to try harder.  Every single day is a chance to practice skills that are complicated (plans, appointments. lunches with friends).  Every single damn day is a chance to make something beautiful happen.  I have to force myself sometimes but I have never once regretted keeping my plans or forcing myself to go out.

The people that want to see me don’t care that I cannot do anything physical.  They want to hang out with me.  So I have to sit or try to participate and look like a special kind of Broken Scarecrow Clumsy McFalldown.  Point is, the game has changed, you just need to learn the new rules.

The fight is what matters.  The harder I fall, the bigger the comeback..  I broke, I was done..  However, look out..  I found her and I am ready to live.  I hate that I wasted so much time.

The things that do matter?  Well, those are easy.  I have an amazing husband who would do anything in the world to keep me happy and healthy.  I have two amazing sons who are both so successful and amazing human beings that I can barely believe I was the one that raised them.  If I accomplish nothing else, I will have accomplished them, and that is enough.

The things that matter to me alone?  Well, those things I need back.  I need to create, I need to write.  I need to love myself.. big belly and all…    It is vital that I wake and give thanks for another day in this beautiful universe; connecting with amazing humans and loving every fucking second.

I am telling my story because it is important to note that you cannot always tell when someone is going to try to kill themselves.  You cannot always tell when you are going to try it.

When I cut myself I watched it form a line of blood on my arm and it was like I was watching someone else.  I was so far away that if it had been a better pair of scissors I may not be here to tell this story at all.

I bare my soul and I write this post because every day people are taking their own life.  No one can or should ever judge them, or think they have them figured out.  No one can judge those that need help in a psychiatric hospital.  They aren’t weak.  They aren’t selfish.  They aren’t at all what most people (even myself before) think.  They are fucking brave and scared and they simply need a hand.

Be a friend.  Love one another.  It was hard to love everyone in the hospital with me, but once I tried I came back to myself and I was able to come home.  Love is vital..  love is life..  breathing and love, and many beautiful hugs…  also music.  the important stuff.

 

 

 

 

 

I have scared the shit out of myself lately.  I have no idea what is wrong.  I have gone from bring a positive person, looking for my next adventure, to attempting suicide.  Yeah, maybe I shouldn’t that but well, I did it.

I have a psych appointment this morning.  I wish I could think of words to describe how I feel.  Hopeless..

I told my mother that I am losing my mind.  Literally, my grey matter is going.  This is a fact.  She told me that she didn’t believe me and that there was no way that was happening to me.  She may as well as have told me that she didn’t give two shits that I am going through the roughest time in my life so far.

All I wanted was a fucking hug.  My kids hugged me.  My hubby didn’t hug me, until I asked for one.  I get that this is huge news and that it is hard for others to accept, but the thing is, it is real.  I am going to be shitting myself by the time I am 60

Suicide isn’t all that crazy if you think about it..  I will not be laid up with some person wiping my ass for me.  I am losing my mind.  Suicide seems the only answer..  it’s the only way that I can save myself from the humiliation that comes with Alzheimer.

This is not a cry for help, no one can help me.  This is a scream.  I am giving up.  This is an unfamiliar feeling here.  I need my brain.  I want to shit in a toilet.  I don’t want anyone wiping my ass.

What fucking choice do I have?

Since I found out I have woken up every morning and I am sad that I woke up..  I want to just stay asleep.

If you read this, it isn’t about my issues, those I am taking care of on my own.  That said, if you come across someone else that is struggling like I am please, for the love of all things you hold dear, HUG the person.  Our lives are ending and we just want a fucking hug,.

 

FUCK

The Pain Brain: Hippocampal Atrophy Found in Fibromyalgia – Health Rising

Hippocampal atrophy adds to another brain region implicated in fibromyalgia

Source: The Pain Brain: Hippocampal Atrophy Found in Fibromyalgia – Health Rising

 

Please check out this article.  Ask your doctor the next time you have an appointment.  This may be the most important thing you do for yourself.  There has to be a way to keep up somewhat functional until it is our time.