Tag Archives: hurt

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: 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.

 

 

Screw ‘Fibromyalgia is Fake’ I wish it was fake, then I could stop doing it

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Screw ‘Fibromyalgia is Fake’  I wish it was fake, then I could stop doing it

Today I have noticed that in every single group I belong to on Facebook is talking about this new group that is up.  This new group is called, Fibromyalgia is Fake.  Here is their picture..  click on either to visit the page if you want to.

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Now…  I sat here and I have been driving myself crazy.  I don’t want to give these ass holes another second of my time or attention.  However, a bunch of warriors are getting upset and that can trigger a flare so I am compelled to write a blog on this topic.

First of all I want to give a whole bunch of links here to incredibly helpful Fibro/chronic pain support groups

Now, all those exist to support warriors.  Tons of information and people ready to be there for you, because we all feel so alone.

There is widespread anger, rage, and hurt as a result of that idiotic page popping up.  We are paying attention to them.  They only have power if we talk about it.  Turn your backs, report them if you want (if it makes you feel better), but the thing is..  they are ass hole internet trolls and to take from Katt Williams, they is haters and just go ahead and let the haters do their job.

Turn your back, don’t get upset.  They only have the power that you give them.  I think they are stupid internet trolls, however, there is a deeper reason behind the rage and the hurt..  we all want so fucking badly for people to see us.  We all want so fucking badly for someone to understand.

Part of having this condition is knowing that most people think you are full of shit.  Fuck every single thing about that.  I am suffering way too much to allow them to upset me with their hateful ignorance.

If nothing else, maybe this will bring us closer together.  Sometimes things can get ugly in the larger boards and that makes me want to cry because we only have each other.  It may be a digital connection, but a connection it is.

We MUST connect with each other.  Compassion should exist in all these groups.  Love, support, and understanding.  Shit will go down.  People will be ass holes, but damn..  we are fighting a stereotype, the least we can do is come together in a sisterhood that is too large to ignore.

Fuck that stupid page.  People like making others hurt or angry.  I study people and I know this is because there is something vital missing in their development.  They aren’t even really grown ups because they are bullying you on the playground, another example…  the people on that page are the ass hole at the bar that gets thrown out the door because they are being a ridiculous ass hole.

If you want the truth, the scientific proof of fibromyalgia all you have to do is read the following, I wrote it:  FIBRO 101

I hope that I leave you with a feeling of peace..  they have the power right now because we are all talking about them.  Stop it, and they have no more power to hurt you.  This is officially the last thing I will say about “Fibromyalgia is Fake”..  let them sit in their own miserable shit, let’s go have some fun and support.

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.

Family and Pain and Fibromyalgia.. Lessons I Learned

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Family and Pain and Fibromyalgia..  Lessons I Learned

There are so many facets of relationsips with your family, it’s almost endless.  I am with the other side of the family today.  The one’s that we only get to see at Christmas.  I wish I could be with family like this instead of the judgmental mess I currently have.

I have one brother, at home, whom I love with all my heart.  His kids are amazing and I love them so much.  My mom is pretty great.  She is there for us, no matter what.

If not for my mother I would be strung out on heroin, lost my children, and never been able to fix my marriage in a time of crisis for us.  My mother is the most angelic person I know, and with her it isn’t an act, it is her true nature.  I know that I get my drive to do the right thing from my mom.  She is the most selfless person I know and I am so proud that she is my mama.

That said, being around this side of the family half of me feels so much sadness that it feels like it might wash me under.

The other half of me feels so loved and accepted that I never want to leave.

I cannot be myself around any of the people at home.  They don’t really know, they cannot know me, they will never understand me.  I can’t let my mother know me, she would be heartbroken that I am certainly (in her world) going to her hell.  I love my mother too much for her to worry that I may go to hell.  No matter that I don’t agree with her views on religion, I can deal with that quietly enough…  I simply don’t want to worry my mom.

It is so refreshing that yesterday I went with everyone to go see the new building that my sister in law bought to use as an exercise studio.  She does Zumba, and has hip hop classes and yoga.  It is wonderfully done.  It is beautiful.  I walked in with her and her mama.  I watched her mama have a very dignified SQUEEEE proud of my baby moment and I loved it with every fiber of my being.

Then I remembered telling my mother about the warriors when they send me thank you notes, or when one says to me
“I felt alone until now”.  She acknowledges it, however, with nary a nod of the head.  I wanted so badly, when I told her I was published on Wild Woman, for her to have a squee moment.

I woke up today determined not to compare one with the other.  Things are how they are, and instead of feeling sad because we are so far away from the people that would never consider missing my kid in a play, or missing him at a football game when he is the Drum Major…. I must be happy to have this time now.  Fill up my love meter.  Remember throughout the year that these people exist and hope with all my heart to move closer so we can see more of the people that are simply too far away.

I see so many warriors whom have been hurt by those they love.  Don’t allow that sort of behavior.  We have to work so hard to walk, talk, make sense, etc..  the least they can do is join with you in that journey.  If they don’t, walk away.  It hurts and it sucks for a while, but once you heal a bit you realize that they were simply holding you back from healing your heart.

Concerning my brother..  he works very hard and he and I are inseparable.  I love him and his wife and his kids so much.  They are wonderful and I am so thankful for them because they do show for my kid.  I don’t get to see him much because he and his friends are very different from me.  We are like oil and water, and as much as I want more time with him I am grateful for the time that I have.

I suppose the purpose of writing this is to point out that we  all have those that we should never take for-granted.  We know the dark side of those we thought loved us.  We have been so fucking hurt by people who are supposed to care.  Always remember, that even if your loved ones are on the internet..  they still exist.  We exist.  I fight for all of us.

You are NOT ALONE…

Fibromyalgia and Abuse.. Please Don’t Hurt me Anymore

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Fibromyalgia and Abuse..  Please Don’t Hurt me Anymore

Once again, I am inspired by what I have read on the boards today.  A lot of warriors are talking about their loved ones treating them horribly.  I am not talking about the post I did about extended family not understanding.  I am talking about your partner, the person that is supposed to love you no matter what.

I have seen several ladies talking about everything from their partner acting like an ass hole all the time, to straight up abuse with severe violence.

I can go back to the post I did about having this horrible shit and feeling so guilty for putting your loved ones through having a sick wife/mother/father, what have you.  Guilt will get you nowhere and if you plan on making a new path for yourself, that includes fibro you have to forgive yourself first, for being sick.  It’s incredibly difficult and I still battle with feeling inferior and like I owe them something because I got sick.

You didn’t sign up for this..  You did not make any deals with the devil..  you GOT sick, it is out of your hands.  Instead of feeling shitty for feeling like this hold something beautiful in your hands.  Something positive.  I know that some days that is impossible..  but like I said, guilt will get you nowhere…

If you are being abused, physically or emotionally, you DO NOT deserve it.  I know that my words can’t convince you if you are in the deep pit of despair that fibro wants us to live in.  However, we all know what pit of despair I speak of..  If you are fighting your body every single day it is hard not to tip into the pit.

So take a day.  Feel sorry for yourself.  You deserve it.  Get it out of your system..  Pick yourself up..  and keep going.

Most importantly is this:  DO NOT STAY if you are being hit, or screamed at by your loved ones.  Yeah, one of my boys and my hubby struggled with it and treated me bad and said horrible things, but it wasn’t abuse..  those were fights.  Most of the time they are wonderful and supportive..  we all have to mourn the life we used to have, and so do the people closest to you.

I will repeat, fights are one thing.  You know if you are being abused, no matter how far in the pit you are.  There is a voice in the back of your head telling you that this is wrong.

If you are scared of your partner, get the fuck out NOW.  If you have kids and your partner is hitting you, get the fuck out NOW.  If you don’t think you have anywhere to go call the United Way number for your area if you are in the United States.  They will be able to help you find a shelter, or help, depending on what you need.

Remember this, over everything else I have said…  You did not ask for this.  I am proof that your life can get better.  Mine did.  However, if you are being abused remember, you did not ask to be sick.  It’s like you just got a foot of snow..  you didn’t fucking do that, any more than you made yourself sick.

Live, Laugh, and Love my wonderful warriors.  Stay strong, and sorry for the F bombs but I feel very strongly about this one.

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.