Tag Archives: pain

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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D is for Disabled

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I have been remiss in my writing lately.  I attend school and it has been really tough lately.  I keep telling myself it’s because the classes are more difficult (which is true) but I also know that my thinking and logic are pretty broken.  For the new people reading this; know that I write from my fibromyalgia brain.  The sentences might run on, or not.  I may use the wrong word or seem really random.  I write for folks with fibro so I write FOR them by not trying to have perfect structure or grammar. I type what is in my brain and that seems to work.  I want to reach a large audience and I know how difficult it is for me to read long paragraphs. I very much want to get the the point, eventually.

Today I am talking about flare ups and disability.  <— there, a thesis.  Yes, I also try for the occasional giggle.

I am writing this today for two audiences.  I am teaming up with a new friend that has RA.  Her name is Allyssa Marie.  Fibro warriors have a lot in common with people that have RA.  Hell, we have a lot in common with anyone who is in pain all the time.  No one else can understand and for that I am glad, I wouldn’t wish this on anyone.

Now, I also like to keep my paragraphs short and to the point, this is a Fibro thing.  So once again, structure suffers a little bit, but I want everyone who reads this to find it easy and informative read.  I wanted to start this post with some information about fibromyalgia flares.  I know that warriors with RA also flare up.  What I don’t know is if it is like our flare ups, or if it is different.

See, last week I was having a huge flare.  I was miserable and I couldn’t think in a sentence, let alone speak in sentences.  That one is what I call my thinking flare, it is usually accompanied by some burning on my skin and a feeling like my hair is growing.

I have another flare up and this is the one I call my physical flare.  This is what I am suffering right now, since yesterday.  It took me several tries to get out of bed.  My hands feel like they are going to blow up at any second.  My head feels the same, my vision is blurry, and I am working up the energy to take a badly needed shower because, yes, I put them off because they make me so tired.

It sucks so bad to get out of bed when it hurts to move.  However, a bit of advice?  I learned that staying in bed unless I am sleeping or getting lucky is not a good idea, no matter how badly you want to stay. It is called sleep hygiene and you have to force yourself to stay out of bed.  I promise, it sounds like torture but it is not.  It takes a while, and some nights I don’t even try, but it does really work.  I break the rules at times and take a nap but only if I am falling asleep where I stand, which brings me to the third type of flare.

This flare up is so intense in involves every muscle, nerve ending, ache, pain, and a feeling like your skin is on fire.  Those flares are so intense the only thing to do is lay down, you are not capable of anything else.  Which brings me to my next topic…  disability.

I belong to a lot of groups on Facebook and every single day I see people getting really excited because they have been given disability.  I am happy for them, but I thought that I could do this.  I thought that I could accomplish something.  I wasn’t wrong, but I am disabled.

I was a heroin addict 15 years ago for about three months.  Luckily I stayed off opiates easily after that, even with fibro.  However, I had to come out to my mom and everyone else I loved.  I had to say, “I am a heroin addict”.  I thought those would be the worst thing I would ever have to admit about myself out loud.  I was so very wrong.

Having to say yes, I am disabled, I need help.  I need some income. That was the hardest thing I have ever admitted. Saying  “I am disabled” still makes my stomach hurt.  My family has suffered greatly because I was no longer able to work.  It still took 4 years to get a diagnosis.  I know that I will get it this time.  My heart is broken.  I was a dancer, a ballerina.  I was a cheerleader in high school.  Now I can barely get into the bleachers to watch my son be the drum major.

It is interesting on my paperwork for disability they asked me where I hurt.  I laughed and laughed.  Everywhere, is what I answered.  Then it asked me several more times, in different ways, and every single answer was everywhere and always.  So, I even got to laugh a bit while I was filling it out.  Knowing though, owning, the title of disabled is a crushing blow.  I know that I am.  I knew that I was a drug addict.  This does not make it easier to say.

I used to work at the PA Renaissance faire putting women into corsets.  I loved it.  I loved making women beautiful.  I also had to quit there.  I want to go and see all my friends that still work there and I am wondering if one can rent a hoverround.  I couldn’t even make it to the front gate without needing to rest.

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These things could all bring me down.  These things could all make me want to quit..  to give up. However, these things only make me want to work harder.  No one and I mean NO ONE and NOTHING can change the way that I live but I am the only one in charge of my brain.

I choose happiness over misery.  I choose to laugh when I know I need to.  I choose life, no matter that I have to crawl sometimes..  I choose to live my best life.  I also choose to be happy.  You have the power, in your brain, to control your own destiny.  It isn’t gone, nothing important is gone.  It’s simply different and we just have to learn to love ourselves when our settings are on “different”.

It is so damn hard to try and explain what it is like when your brain and mouth refuse to work together.  I have worked for years to make my sons and my husband understand.  They finally do.  Want to know how I made that miracle happen?  I stopped trying to explain myself.

I didn’t hide anything (except the pain, we all do that) I just existed.  I stopped trying to make them understand and I started to live my best life in a whole new way.  I interacted with them and if I struggled to find words, I didn’t explain, I just make up words.  They will eventually learn your language. This new method, the one where we exist and let them watch, works.  It takes a lot of patience and a long time, but you will get there.  If I can do it anyone can.

For my words, when I lose them, conversation goes something like this :”Are we going to the field thingy to watch Rudolpho Hans play running ball?”  Which translates to, “Are we going to the stadium to watch the Saints play football?”  I know that first one was mostly inane gibberish.  However, I got A sentence out.  They will start to learn your language, I promise.

This just happened…  an example of my speech issues: in a text to my husband, “Except smokes.  The shenanigans cigs.  No… Monrovia..  dammit.. Morgan…  Fuck it.  Those cheap ones” That was my text to my husband.

I know that I should quit…  that isn’t why I shared this.  I shared this because it is real life..  My life…  Maybe yours too.  The cigs are Mavericks, I finally thought of it.  I really have to laugh..  this is funny.  I should write children’s books, I am excellent at coming up with fun, meaningless, quirky words.  They are easier than regular language most people use to communicate.

Warriors and new friends with RA it has been a pleasure to write some words for you all, maybe I can help a couple people.  Remember, always, LIVE, LOVE, and FIGHT ..  We got this.

Never say You’re Sorry

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Never say You’re Sorry

The snow storm has hit.  I don’t feel much better than I did yesterday, but a little.  We got the card game Cards Against Humanity.  I played last night with my family.  It is a hilarious game.  Not politically correct, but hilarious.  At any rate, my pain got to the point that I was yelling out when a particularly hard pain hit me.

I kept yelling out then apologizing.  I realized there is no reason in the world that I should apologize.  Even guests in my home have to accept that this is part of what goes on in my home.  I tried to put it into words in the following video that I recorded, but I was having a hard time with words.

I am still having a hard time with words but the thing is, sometimes you can’t help it, and a sorry comes out.  I simply don’t want warriors feeling worse about an already horrible condition.  I would never suggest you be rude, but use apologies for when they are truly called for.  You should never apologize for being ill or needing breaks or yelling out when one of THOSE pains hits us.

I have made it clear with my family that if I yell HELP I need them.  Otherwise, the symphony of sound coming from me should be ignored.  I promised them that if I need it I will yell HELP.

Don’t apologize for your pain, just deal with it how you do.

Now, I saw a post on my page called Fibromyalgia can be Funny, in this post warriors are talking about how they wish that it was just the pain, that it is the rest of the shit that comes with fibro that makes it so horrible.

I have read every response and in my mind the whole time I am thinking about when this nasty shit started..  I would never have imagined thinking that the pain was the lesser of the evils that attack me with this disorder.

I am amazed that this is now the truth.  I want to remember things.  I want to feel like I slept when I wake up.  I want to be able to have a normal conversation on a telephone with the lady at my Dr.’s office.

I, like most of the warriors in my group, would take the constant pain over all the other shit.  Brain fog, forgetting, remembering to forget, lists, piles of shit that I mean to clean up every single day and I never manage to get to it.

All this is changing our entire life.  I am not the same person I was before this started.  I have worked hard to get where I am.  I am constantly working on myself.  I find the things I feel need worked on and that is my focus.  Little mini “me projects” that help me get to know this new version of myself and live the fullest life possible.

Remember, Live, Love, and fight..  or nap..  if that is what you need.

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.

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.