Tag Archives: FMS

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.

 

 

Friends, Please Read. I Remember, Then I Broke, I Miss My Life.. I Want You Back

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Friends, Please Read. I Remember, Then I Broke, I Miss My Life..  I Want You Back

I am 39 years old.  I have two sons, who I had when I was still young.  They are 17 and 18 years old.  I remember that feeling, when I was young and married to an Army guy..  I remember when the grocery store was my “get out of the house” card.  I always felt slighted because I wanted to do the fun stuff the other people my age were doing.

Now I am more than happy to only leave the house in a weeks time to go to Walmart.  With fibromyalgia everything is more difficult, going out nearly takes an act of congress.  Putting on a bra nearly does me in these days.

I have friends and I am afraid to hang out with them because I am afraid that they won’t like the new me.  I am so much different, I am scared to lose them as friends.  I miss them so much.  But the fear of losing them forever keeps me away.

They live far away, so it isn’t that difficult to maintain contact on the internet..  Because then I show them what I want them to see.  I don’t want to be dishonest, but I am fucking terrified that none of you will like me anymore.

I found occasional help with the boys and I have had a great life, but I remember…  I remember saying to my husband, “yeah you think that going to Walmart counts as an outing” and at the time I remember..  It didn’t count, I struggled for a long time.

Incredibly bored and lonely, this was before internet, this was before cell phones.  I remember that I was different and I could walk and I could think and I had friends; some of which are still my friends, from afar, because I am fucking terrified that they won’t like who I have become.

I could keep up with my boys.  I got lucky there.  I stayed healthy while they grew.  Healthy enough to really make up for how shitty I was in the beginning.  Then I was 30 and I had to re-evaluate.  I remember when I felt like I had it all.

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I remember getting a manager job at Walmart, where I literally walked miles every single day.  I remember thinking even though the job was sort of shitty, I had it all.  I was able to camp all weekend with my family.

I remember.   I remember having rough times, with drugs, with myself, with my marriage.  I fought and struggled and we fixed our marriage, I fixed how I was with my kids..  I still didn’t think it counted as a trip out when all I was doing was going to Walmart.  But I was happy.  I was happy and I didn’t take it for-granted..  thank the light for that.

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I spent many years content.

I couldn’t wait to hang out at the Happy Hippy Haven every single weekend.  During those parties I never had a bed, I was able to sleep on the floor, or not sleep, which was often the case.  However, I had the time of my life.

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I remember watching my kids grow and that will forever be the best accomplishment I am likely to make.  They are beautiful people who are going to make the world a better place and I am more proud of that achievement than anything else I can imagine for myself.

So, I worked..  I was there for three years.  They were pretty great.  We had money.  We finally found an awesome rental house.  Things were going our way.  I even went and I bought a brand new Kia.

Then I started feeling like my lower back was numb, and I would get horrible shooting pains.  Then I remember hanging some shirts above my head and holding my arm up seemed to be harder and harder every day, and this really scared me because it was summer, the stuff was not heavy.

I remember when a co-worker made a joke and tapped me on my arm and it HURT, and it hurt for a really long time.  I knew that day that something was seriously wrong.  I felt in my gut that this was the beginning of something.

I remember when I used to take comfort in a shower.  I remember when I could hang out with my friends.  I remember when I could dance and spin records.  I wish so very much that I could forget, because even as I type it brings tears to my eyes.  I miss my life.  I miss my friends.

I have spent the last few years figuring out who I am, with this life altering disorder.  My whole life is different.  Everything is different.  I love getting to go to Walmart once a week.  I am really good at being happy with what I have.

I fucking want more.  I want to see more of my friends.  I want to try more stuff.  I miss my life, but I will be damned if I lose another second of living to this fucked up monster that lives in my brain.

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Please text me friends.  I miss you.  I want you to decide for yourself if you still want to hang out.  Having a few left is so much better than closing myself off to all of you.  I get it if I am too much..  but I will not give up without trying.

Live, Love, and fight like a girl ❤

H is for HELP ME.. This Sucks

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H is for HELP ME.. This Sucks

I want to know why.  I want to know how it is possible for millions of people to suffer from fibrmyalgia and yet no one listens to them?  How is it that people around me literally think that I am insane and faking it for 6 years now?  I have gained 100 pounds, I have made my husband and my sons have to deal with a sick wife/mother, I never leave my house, I fall down in public, I can’t sleep some nights…  how in the hell can anyone think that I would fake something for so long?

Well, one theory of theirs is that I am faking it so I can stay home and smoke pot.  The funny part about that one is that when I was working at Walmart I was smoking MORE than I do now.  I was so baked all day when I worked there, just so I could continue to ignore how I really felt about that place.   Point being..  I was really high.

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Now I medicate.  It is a very different distinction.  I medicate with an herb and break the law because I am 14 years clean from all opiates and I intend to keep it that way.  Arrest me if you will officer, but I won’t be going down the opiate rabbit hole ever again.  Opiates steal your soul, not unlike some unholy demon we all see in scary movies.  Opiates didn’t make my head spin around, but it may as well have.

Yup, I smoke..  rather I vaporize…  I lost my life to this disorder.  I lost the ability to take walks.  I have lost the ability to touch ice or snow.  I have lost the ability to sew.  I cannot make the things I used to make and on days like this one I can’t even make jewelry.  I don’t even try because I know it won’t go well and I will be sad.

I am okay on these days because I have a heated throw that I lay under.  So, I am okay..  but this is no life.  I tell everyone to have a positive attitude..  and I still do..  but on days like today it is okay to look like a scarecrow and cry a couple of tears.  I allow myself some time to feel sorry for myself.  I don’t drag anyone else down, at least I try not to, but damn if I don’t wonder what the hell I ever did to make this happen.

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I tell warriors not to ask themselves that pointless question.  I think, though, that is impossible.  I try to catch myself before I actually have a full blown pity party but hell..  this sucks.. and I hate to use the F word, but this is NOT fair.

Fair..  the all important word here.  The F word that really matters to me today.  I see all these insane horrible people that run this country, or belong to ISIS or what have you and they are fine.  Their bodies work.  I watch videos online and I realize that I have forgotten.

I have forgotten what normal feels like.  I have forgotten the warm comfort that healthy people have when they get out of the shower.  I have forgotten what it was like when stepping outside, even when it is 2 degrees, wouldn’t shut my body down.  I looked forward to forgetting but now that I have it is even scarier.

My brain..  it won’t work.  It won’t work when I am trying to talk to someone.  I feel so stupid because I am skipping all over and the words take so long to make it from my brain to my mouth I end up talking nonsense.  I say things and within a minute or less I totally forget that I have said anything.

Point is, this is terrifying.  Sure, we aren’t dying..  but I have to admit that some days I wouldn’t mind so much if I were.  I don’t want to kill myself, but daily torture wasn’t anywhere in my five year plan either.

I will quote Will Ferrell in Talledega Nights..”  Help me Oprah Winfrey, Help me Tom Cruise, Help me Jewish God… ” Please, there are millions of us,. why are they still giving us depression medication?  Why can’t we get the help we need?  Why can’t we get the attention that we deserve?  We all deserve better than this.

Shut up I am Talking to you…

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Shut up I am Talking to you…

We all have those people in our lives.  People that we care about.  People that we want to be close to.  Yet, it is very hard to feel close to someone when they seem to be ignoring our extreme suffering.  When they dismiss you.  When they suggest you lose weight, when they blame it on the weight, or they send you links to helpful pages like this one:

Thing is,  doctors do know the cause and it is none of these things.

Thing is, doctors do know the cause and it is none of these things.

Now, I dearly love the person that sent me this link.  I appreciate that she thinks of me at all.  I have learned that we need to be happy with what they choose to give us.

It’s super easy to stay away from that person, and warriors are losing friends and possibilities at making life better.  The thing is, I have given this a lot of thought and I think there are four main types of friends when you have fibro:

1) The ones like my husband, he has seen me go through this process and start down the path I am on now.  He seems to get me, even when I don’t get myself.  He can keep up when I am speaking.  We have bends in progress, but we have adjusted so that we can communicate more effectively.

2) The people who think that it is real, like my mom.  She has seen me way too ill to deny that I have it, but just cannot believe that there isn’t ONE pill that can make me all better.  They have no idea.  When I hit the ground near my mother she reacts like, “there is no way a condition can do all those things” It doesn’t matter how many articles I have sent her..  she says she will pray and if I let Jesus in, it will take it all away.

3) The ones that think I have spent 6 years “making it up so I could stay home and smoke pot all day” grrrrrr I have nothing further to add to this except the following: you can bet your sweet little ass I would have pretended to get better a long time ago.  grrrrr

4) Like my mom, this last type also believes that you have fibro, but they send me links to articles like the one above on a web page dedicated to home grown foods, organic, etc.  I try to explain that having fibro causes a lot of those very things, listed in this article..  but it doesn’t seem to register and it is hard not to hurt their feelings because they truly care about you enough to post the article to you at all..

I know there are many more, but I don’t care about them, I care about us.  The warriors in the trenches, just dying for a day without pain, praying for someone to be able to understand what they are going through.  It is not our job to make them understand.

Find people who get it however you can, but don’t expect anyone that isn’t in chronic pain to understand how we feel.  On an even deeper level, Fibro is so much more than pain.  There are thousands of us on social media, making friends, growing a network of support.  So what if your support system is a digital one..  we get to live in a time where this is possible so mount up and join the technology revolution for what it can do to help us.

Love the people who try, no matter how frustrated you get, understand that the ones trying to help love you and have no idea what to do.  Tell them.  Let them know what makes you uncomfortable.  Show them one of the following63989_784118231626979_2964433165183062052_n

or this one

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Or this one

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As always, read around on my blog here, I talk about a lot of struggles like these and what works for me when I went through them.  I found that I could type the words and make a little bit of sense.  It is so hard when you have fibro to connect your out loud words with the ones you are thinking in your brain.  It gets all jumbled up and hard to express yourself.

Then you are in a fine pickle, because once your heart rate goes up (because you think you are insane), then everything becomes even harder to understand.  Even more difficult to express your words correctly.

Sometimes thinking.  I have been in fights already with my hubby and kids and I would say over and over that I didn’t understand, and they would get so pissed off at me.  I truly didn’t understand..  We are still working on that one, but we have all learned.

You won’t learn without fucking up.  Thing is, so fucking what?  So what that you seemed insane or drunk when you were out in public, especially if you cannot hold yourself up.  I laugh my ass off when I go down.  I make sure that I do.  I know that I am headed that way so watch the following clip from bridesmaids.  It’s a little gross, but HILARIOUS…

At the end, when she is crossing the street and going down she says “It’s happening”..  well that is what I say now.  Both me and my hubby.  It is like a secret joke.  However, the intended results are hilarity and laughing because I love the above scene.

So, screw it if you shit in a sink, or laugh when you fall down…  or if you seem drunk.  We suffer enough, other people can keep their own shit and just let me deal with mine.  I am full up with trying to live the best life I can and if someone can’t get on board, assign them a category and try to be understanding to those that mean well.

I Ripped my Soul Open and This Came Out…

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I Ripped my Soul Open and This Came Out…

On most of the boards that I follow concerning Fibromyalgia and other chronic pain syndromes there always seems to be that one or two warriors.  I speak here of a specific type of warrior…  the ones that have managed to come off of all the meds, they take all natural remedies, and they have their diet nailed down totally.

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I appreciate and applaud their ability to have overcome these afflictions in that way.  I try to imagine having that much self control and I fail utterly.  This makes me feel like I am failing at an epic level.

I write this blog and people read it.  I write about my journey and even if no one reads these words, they are my truth.  They are my soul.  I bare it in the hopes that it resonates with someone who suffers like this to make them feel less alone.

It is the loneliest thing on the planet to have your life ripped away to the point that you stay at home and do the same stuff everyday.  I feel like a piece of shit parasite, using resources and contributing nothing; I only feel like this occasionally now.. I do a lot of soul searching now.

Hell, I spent years running from this new reality, now I realize I missed out on a lot of time for introspection.  Getting to know myself.  It was like living my early 20’s again.  I clung to the hopes that the outcome would be different for me.  I waited for the day that I get better.  That day is never going to get here and it has taken a long time to be okay with that.  That is lost time, though, that would have been better spent riding these new waves in my brain and getting to know the new me.

I digress.  If I am not on the amazing diet, or taking the right supplements, or doing the right homeopathic thing for myself; does that mean that I have any right to share my soul to others that suffer like me?  Then I realized that is exactly what I should be doing.  Showing all my deepest/darkest.  It is my path.  This is what I am supposed to be doing, and every once in a while..  like today…  I realize why.

I am alive.  I am not dying.  I have this disorder.  I still exist.  It is up to me, at what level I want to exist. Just a couple of years ago I was getting black out drunk and hurting my friends and the people I love.  I needed to escape my reality, if only for a little while.

I realized that when the pill bottle says “do not drink while taking this medication” that it does not mean “WOO HOO, this is gonna be even more fun now”.  It says that for a very specific reason.  Drinking holds me back from the baby steps forward that I fight so hard to take.  It makes me depressed..

Judge if you must, I have never been very good at taking direction.

At any rate, I use cannabis for pain.  I am on a metric shit ton of pills, but not an opiate.  I stay off the opiate by using cannabis.  Heroin or a harmless plant?  To me that is a simple choice.  Harmless plant that is actually really good for me on many levels.  Okay, I will step down from my campaign for legal cannabis platform now.

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So, I am on a metric shit ton of pills, I smoke ciggarettes, I drink coffee, and right now I should be doing around 100 other chores, but all I can seem to manage is to stay warm under my blanket and type my guts out.  Granted, the fact that it is around 5 degrees outside makes a bit more sense.  Our house is very old and the insulation in the walls gave up that fight a decade or so ago…

I will say this:  We are all OK.  It is OK if your husband has to hide your pills from you (yes..  that happened to me).  It is okay if you aren’t in down facing dog because you would rather play that awesome game on your phone. As I posted yesterday, OK is good and considering how totally fucked I feel, at everything, right now..  OK and upright out of bed typing what might be total gibberish seems like OK to me, and that simply just has to be OK with everyone else.

If they can’t get on board, put them in a protection bubble titled “people that would die if they hurt this bad, they cannot be blamed for acting like an ass hole”. Their words and judgement don’t get to hurt you because holy fucking shit, we hurt enough already without your ignorant bullshit.  So, I am posting this as is..

sometimes I edit things later, but it will still have it’s own guts.  I simply like things to almost make sense, if it is better than that then I am doing….  everyone together now….  OK…  O…  FUCKING …. K and that is a good thing.

Family Love, Hate, Pain and Fibromyalgia..

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Family Love, Hate, Pain and Fibromyalgia..

Knowing that your blood relations think you are a giant ass hole is one thing.  Hearing from someone that I AM what they talk about, daily, is a whole other ball game.  My heart wants to break, but I am here with family that lives 15 hours away, but I get to spend a whole week surrounded by unconditional love.  One of them reminded me that it is most certainly their problem pointed out how much power I have because I am what they talk about.

So instead of a broken heart I have fingers to type with.  I have no contact with any of them.  I have blocked them from my Facebook.  I am a liberal hippy living in a republican, redneck, Amish area..  and the people that hurt me the most.  The people that have the most to say about me..  well they are the ones that are related.

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I have done nothing to earn their ire.  Apparently everything I post everywhere gets shown around and talked about.

This news has caused me to flare pretty spectacularly.  My mind though, that is calm.  If they would only not call my children little fuckers.  If only they just hated me.  We moved here so that my kids could grow up with extended family around and it has turned into a nightmare for my kids and my husband.

We moved a few years ago so that we literally live within a mile of them, yes, all of them.  I haven’t done a thing.  Years ago when the fibro started to get worse; I wrote a scathing post on facebook and I said some things that were not fair.  I apologized.  Since then, I have barely spoken to them, let alone done something so awful that I am what they talk about.  I am what they fill their days with..  Honestly, that is fucking hilarious.  It makes me sad for them that I am how they fill their hours.

That said, I have left them alone.  I talk about being hurt by my family..  I have been hurt..  so hurt.  I used to talk about them turning their backs when I needed them the most.  It hurt so much that they thought I was such a piece of shit that I was faking an disorder that has ruined my life and the lives of my children and my husband.

I don’t talk about them, except with my husband and those conversations go something like this..  “Blah Blah, they said this today”  “?????….?????” “that is just insane”..  I am not afraid to say the wrong thing in anything that I post, but as hard as I try I cannot escape the things that they say, people tell me what they say.

I ignore them because I know they make me flare.  Yet, no matter how I try things get back to me.  Horrible things about me and my kids.

As I write this I go back and forth from being hurt to not giving into what I feel.  I think about them calling my son a little fucker and I want to tear shit apart.  These are wasted emotions.  I must allow them to wash through me..  I have to feel them.  Holding that shit in will give you cancer (in my opinion).

I tell all my readers, warriors to let it go.  You are better than this.  You have so much worth, don’t let people who think nothing of hurting your soul do exactly that.  I have to let this go.  This is another one of those lessons that we are doomed to repeat.

When a child is developing, which is when all these family members were kind to me, it sticks in your schemas.  It makes you seek their approval, even when you are an adult and it is the last thing you want to do.

It is part of you..  part of your brain..  you love them..  you want their love, like you remember..  But they not only turn their backs, sometimes they continue to say horrible things about you and your family.  This can be so incredibly painful, one of the hardest things to deal with when the fibro monster hits.

Just know, once again, you are not alone.  When your disorder is invisible you find out who truly loves you and who is going to be a source of some of the worst pain you have ever felt.

We WILL continue to LIVE LOVE and FIGHT the pain…  Try to let it go…  don’t give in and let them get what every bully wants, and that is a reaction.