Tag Archives: chaos

The Storm

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The Storm

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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Fibromyalgia Makes me Hate Myself

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Fibromyalgia Makes me Hate Myself

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

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

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

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

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

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

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

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

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

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

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

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

So, stay tuned and I will see you soon.

 

 

 

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

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

Hello fellow warriors and friends.  I write this today as a result of the things that went on yesterday here at my house.  I live in the country, with grass and hills that make even a walk outside impossible.  I can go outside and sit on my porch (I am right now) but I can’t go anywhere else because I still don’t have my car.  I am miserable and getting worse by the day.  Yesterday I broke.

They are trying.  See, I live with men.  Two sons and a husband.  They are trying to get our other two vehicles on the road but because of how expensive that is in Pennsylvania it is taking months before we have the money.   So, I am stuck here.  I have been for years.

I don’t complain much.  According to my husband, I am some sort of crazy person who loses my shit all the time.  Same with my oldest son.  The things is, though, is that I do not.  Yesterday I cried because I am so sad and miserable and I have been trying to hide it from everyone, especially myself. The problem is that every time I have a feeling about something I am “crazy”.

I have been binge watching television.  That is about it.  I cruise around my laptop to facebook and reddit.  I have been desperately trying to distract myself, to no avail.  I still feel like a miserable lump.

Now, I know that there are a lot of women with fibro who have no one.  Or whose husbands are just horribly mean and abusive..  No way is my situation worse, or even as bad as that.  But the reality is, is that everyone has their own demons; they have their own struggle.  My struggle is that my husband has no compassion.

He admits that he has none.  When I was crying yesterday because I am so miserable, sore, and bored he got mad at me.  He gets angry when I cry.  He is never sweet, or caring.  In those dark moments I am on my own.  It would be easier if I didn’t know for a fact that he is capable of it.

This is not to say he doesn’t help in other ways.  He is wonderful.  Him and the boys do their own laundry, they help with dishes.  I know that for the most part I am blessed.  I make sure he knows I feel that way nearly every day.  I do NOT take that for granted.

But the dark times?  The really dark times, when I feel like I am slipping again.  When I am wondering if I still want to live at all?  In those moments I need him the most and he is just angry.  I told him he couldn’t understand what it is like to be housebound and that made him mad too.  He won’t help me because I said that.  That is the excuse this time.  Of course he can’t understand, he has NEVER been housebound.  I don’t understand what he does at work every day..  at all..  how can this be the reason your shutting me out and hurting me worse?

I don’t know if anyone will read this..  I just needed to get it out.  I am so sad and I want my husband to hug me when I cry..  how is that too much to ask?

So, right now I am broken.  I am desperately trying to pick up a craft or color, but then I just don’t..  I keep doing the same thing..  over and over.

I am really angry with myself.  I am angry at so many things.  I am pissed that I cannot walk around my own lawn.  I miss my old life sometimes.  These are the reasons that I am freaking out.  This is permanent and dammit, I am going to suffer and break and I need my partner to help me put myself back together again.

Do you Remember What Normal Felt Like?

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Do you Remember What Normal Felt Like?

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

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

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

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

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

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

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

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

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

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

 

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

Fibromyalgia: The Thing we Don’t Talk About

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Fibromyalgia:  The Thing we Don’t Talk About

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

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

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

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

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

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

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

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

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

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

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

 

 

Do Not Kill Yourself, Your Reasons are Stupid

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Do Not Kill Yourself, Your Reasons are Stupid

Recently I have been in a very dark place.  Not just thinking about suicide, but actually planning it..  and not because I was bored and sad either.  I scared myself.  Then I thought some more about the whole horrible mess and I realized that I would be killing myself because of school.  Not that there are any good reasons to off yourself, but school?  Something I can fix?  Fuck that, I want be alive because I am needed here.

I can talk about suicide with a blasé attitude because I have a chronic illness.  I am quite certain I am not alone by playing the Suicide Game in my head.  That has always been enough.  I would think of ways to do it.  I would think about places.  I never planned to do it.  Ever.  My chronic pain warriors can tell you the same, this is just yet another thing that most people do not talk about.

I will add here AND FUCKING PAY ATTENTION..  if you are really scared for yourself, check yourself into the psych ward for a couple of days.  It is not like you see in the movies, they take care of you and you get the help you need.

So, back to my thing.  I have woken up crying for 4 days.  School is out for now.  I need 10,000 bucks.  Old news, I know.  Today I woke up in a good mood.

The thing that bothers me the most is this; people have so much money.  I have seen them, we all have.  They earned it, I absolutely believe that they can do whatever they want with it.  That said, I am crying and screaming and pounding for 10 grand when some other person has that in their safe at home for emergencies.

Some of them help their communities, some of them are amazing, I just wish I had the means at my fingertips and I could pay for school and start to help.  I do not want to be rich.  Once the boys are out, I am all about having a tiny house.

So, the upside is that I am no longer staring at the bottle with stars in my eyes..  I am safe from myself.  This is a test.  Just how patient can I be?  Just how hard am I willing to work?  Only time will tell, except fuck that..  I got this.  I learned to live with a debilitating disorder, surely I can figure out my next step.

I Need an Adult!

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I Need an Adult!

I already typed this entire post..  but I hit the wrong button and lost the whole thing.  That is okay.  Maybe this one will be better.  First, I want to talk about fibro and how if I get worked up, no matter if it is happy, sad, mad, excited, or scared..  it all ends up in the same place, one of those flare ups where you can’t finish a sentence or even have a complete thought.

I know that I have a point of no return.  Emotionally, if I reach this point I know that if I don’t relax and ground myself immediately I am in trouble.  I never ground myself..  I can’t think clearly enough at the time to do so.  This is about as chaotic as my body gets.

You would think since we have to fight this all out war against our own bodies, that we should at least be able to feel things without ending up in a mumbling painful puddle on the floor.  Some of you warriors may be able to do this.  I cannot.  If I am excited or angry or mad it all goes to the same place..  drooling on the floor having spasms.

Okay, not that bad but I end up not being able to finish my sentences and being really jumpy and short with everyone.

We are leaving soon for holiday family time in Ohio.  I am very excited..  but I have to carefully govern that feeling..  if I don’t wham…  floor/pain/can’t think..  you get the picture.

It is patently unfair that we are not even allowed to feel much or it takes this downward spiral..

Our bodies are the epitome of chaos.  At least, that is what it feels like to us.  The reason that I have this blog is less about shoving platitudes down your throats and more about making all warriors feel less alone..  Feel less like they are chaos incarnate.

That said, though, we never know if we are going to lose our ability to walk while in a store..  or have one of those shooting pains that makes one yell out… or be able to wake up and walk tomorrow… showers are a special kind of hell..  I have almost forgotten what it is like to feel refreshed after taking a shower.  Now I am simply exhausted.  It is better to forget.

This is chaos.  However, we can try to figure out where our line is.  You know the one..  the point of no return; when you get so worked up that you end up in a flare.  I haven’t found mine yet.  It might be one of the many things that are out of our hands.

If so, I suppose I have to accept that no matter what I am feeling, if I am feeling a lot of it I am going to start to shake, my thoughts fuzz up, and I have to be in a quiet place where I can’t embarrass myself or those around me.

This is why I feel like I need an adult.  I am almost 40 years old, but I know enough about this disorder to know that “I need an adult” when I am in a certain state.

I am lucky to have one in the form of my husband and my boys (who are teens).  Now I can enjoy Walmart, and NOT come home with 5 dozen eggs because we were having a party.  Yeah, that happened..  for real.

I keep the size TEN shoes (I am an 8) to remind myself that I cannot be trusted to shop.  I get overwhelmed and since decisions are already nearly impossible, picking out a pair of shoes can be as impossible as starting to fly.

So, there you have it..  emotions can lead to a flare, even the good ones..  Warriors, remember you are never alone and always, always remember to Live, Love, and Fight…

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?

Obsessions, I Cannot Stop Obsessing

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Obsessions, I Cannot Stop Obsessing

Today, I am writing about obsessing.  I am not clear on whether or not we obsess because it is part and parcel of FMS, or if we obsess because we lose our ability to live the way we used to.  I spend a lot of time sitting and thinking.  I catch myself watching things out of my window, or staring into space.  I am sure that I am not the only one to experience this.

When every single thing, showers, driving, walking, etc; makes me tired I simply have too much time on my hands.  I don’t have television, but I make up for that with Netflix and Hulu.  I have school, and I spend as much time as possible working on assignments.  However, I have learned that after a certain amount of time that what I am reading or doing for school turns into sounding like the teacher from Charlie Brown in my head I am forced to take a break.

It could be, that because we have such a hard time remembering things, we obsess over the things that we know we must not forget, no matter what.  This still doesn’t work.  I still forget things all the time.  Thoughts are like the wind, you touch them for a moment and then they are gone.  I have found that if I stay quiet long enough, they will come back.  Not every time, mind you.  However, every once in a while when I hit the verbal speed bumps, if I take a moment the thought will come back.

Perfect example: As I was writing this, I was thinking about my music selection for the day.  By the time I got to google, I forgot what I was doing.  One button, well..  ok..  two..  and I forgot what it was I wanted when I got there.  That one JUST happened.

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Even if I don’t know where the thoughts are coming from I still know surely I am not the only one with this issue.  I know a few tips for helping.  A small hand held game, puzzle games are great.  They are distracting and they help exercise our brains.  Try not to binge watch television, if you can.  It is a wonderful distraction and you must save that pleasure for the days that you are truly spent.  The days that you have no choice.  Screw it..  lay down and rest.

I obsess over things because I am alone and I have no one to talk to, except the dogs.  Women need to talk about their stuff.  It is how we were built.  When we were gathering and having babies in the woods we needed empathy for one another, we needed to talk through our shit, we needed interaction and communication.

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I am battling my body in a war that no one can see, and only other warriors understand.  I think it is normal for us to obsess over our bodies which would then translate into obsessing over other things.  I am quite sure it is habitual.  I don’t know how to advise you all on how to stop because I haven’t figured that out yet myself.  I will share it the moment I figure it all out.

Tests have proven that social interaction is extremely important in a humans overall well being.  Cognitively it is important that we have interaction with other humans.  I made my FMS page for laughs, and for a spot where warriors can go to chat so they won’t be alone.