Tag Archives: fight

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.

 

 

 

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 ❤

Learn How to Start Over, Find the New You..

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Learn How to Start Over, Find the New You..

I see so many warriors struggling with fibro; fighting the fibro as though if they try hard enough they can be strong enough to make it stop.  Mind over matter, that is how we are trained in our lives.  As we grow, that is part of the schema that makes you who you are..  I did it.  I said, I can fix this.  I can concentrate hard enough and maybe I can make it go away.  If only I was strong enough I can overcome this.  I was a ballerina, I was a Marine, I was an athlete.  I am none of those things now.  I am someone who has had her life taken from her by this fucking menace called Fibromyalgia.

Thing is, I was doing it wrong.  I can’t fight this.  Have you ever heard the rule for if you step into quicksand?  If not, it goes like this..  the more you wiggle and try to get out, the faster you sink.  Don’t fight the quicksand, you will sink quickly.  Don’t fight against the fibro, you will sink.

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Now, I figured out, after years of laying in my bed thinking that today may not be so great but tomorrow I will surely feel better.  This can’t be happening to me.  What have I done to deserve this constant pain?

No one deserves this pain.  Period.  Karma has nothing to do with this.

I digress…

When things didn’t get better I laid for a long time in bed concentrating as hard as I could, thinking that I could stop my heart.  That way it wouldn’t be suicide.  I was a hot mess.  I did that for two years.  Apparently, you cannot concentrate hard enough to stop your heart, I had to figure out something else to concentrate on.

I had a light bulb moment one day.  I realized that this is my new reality.  This is it.  I have lost my life to this condition.  I must mourn the losses.  I still mourn the things I lost from my old life.  I used to be able to spin records.  I could dance, I could walk in the woods, I could cross a creek on a log..  Almost every single thing I took for-granted, including my ability to walk, shower, sleep.

It takes a while to get over being sad that you lost all the things that are out of your reach now.  I still have moments when I mourn what I used to be.

The thing is, you have to start back at zero.  Start your process.  You know what needs changed.

I realized that because I was so caught up in the condition for so long that I was literally equal with an elementary student emotionally.  I realized that it stole my brain, and the schemas I had all worked up in my life were different.  I had to step back, sit down in the desk from 2nd grade, and add my new life into new schemas that work with the person that I am now.

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A schema is a term I learned in psychology class.  A schema is a group of information that we learn.  For example, a baby will learn how to hold a bottle on their own, then they add to the schema and learn how to eat cereal, then they add to the same schema the ability to hold a sippy cup…  All these things are a schema.

We had our grown up schemas figured out, then WHAM it all changes.  You have to admit that these things are gone.  Mourn them.  mostly figure out where you are now.  Give up the struggle and start over.  Hold hands with your condition.  Start back at zero.  Yeah, it sucks ass.  A lot.  But the result is a happier life.

I have brought my grades up, I have learned how to focus on school.  I figured out that even though I can’t feel my fingers I can still wire wrap stuff.  It takes me longer, and it does hurt.  However, the satisfaction that you feel when you complete something cool is off the charts… amazing.

Remember, though, that even the losses are good.  When you are building a person, you need to know what you can’t do… That may be more important than the things you can do.

If you can find one or two things that you enjoy, take off, do it whenever you can.  If you fail, go ahead and cry if you want, this can be frustrating.  Throw things..  Not at breakable stuff, of course.  But in the end, you start to learn who you are with this disorder.

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Once I learned who I was, and went through the process of getting to know myself, I realized that I am a bad ass.  I realize how strong I can be.  I realize that I am a good person.  People saying fibro is fake don’t bother me.  People that are my blood and read my blog so they can make fun of me..  well they bother me a little, but not for long and never very much.

Point is, you can do this.  You can be a badass.  Follow along with me because I am writing a paper about fibromyalgia that will certainly contain information none of you have.  It will help, but learning the new you is the goal for this post.

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.

Drowning in Guilt… The Chaos That is FMS

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Drowning in Guilt… The Chaos That is FMS

I spend a lot of time on fibromyalgia boards.  I spend a lot of time researching this condition and what causes it.  My goal is to be a voice for the voiceless.  My goal is to help.  Try to put into words the things that I do to make life not only bearable, but pretty damn good.

Lately I have noticed a trend in the fibro groups I belong to.  Women, ready to give up.  Women saying, how can I do this for the rest of my life?  Women saying, won’t my kids just be better off without me?  Women saying they just don’t think they can hang on for another second.

This is nearly unbearable for me to see.  Unbearable, because I know exactly what that feels like and it is a nightmare.  I am here to tell all warriors out there that there is another way.  There is always a work around.

Guilt.  Guilt is the thing that is holding us back.  My kid, at one point, as well as my husband both told me that I ruined everything.  That was my rock bottom.  I knew that in a way, they were right.  Fibromyalgia messed everything up..  especially me.

See, it wasn’t me they were mad at, but it is how I was handling being sick.  I had to stop trying to make them understand and focus on myself.  I am still a work in progress, but it has certainly been a while since they hurt my feelings, or made me cry.

So what changed?  Did my FMS get better?  Absolutely not.  I changed.  I came out of my room.  I stopped being afraid of interaction, because through interaction with my family I was able to start realizing what, exactly, I am capable of.

I admitted to myself that FMS is a reason I cannot do certain things..  FMS cannot be the reason that we shut our families out.  Don’t make them understand, just take the time to hang with them and they will get to know version 2.0 while you work on finding it.

I know that I have a short fuse and I startle easily.  I know that when I am in public I might skip my words all around while I am trying to explain something to a gas station attendant, or a cashier.  When I say short fuse I am talking about interaction with my son.  My 18 year old and I have struggled the most.

We have normal mom stuff, then add a sick mom to the mix..  We have had a hard time.  I hid for so long that they grew up a bit and I missed a lot.  I didn’t let the guilt from that weigh me down, I just used those feelings to get out of bed and TRY.

I have had to take several breaks from school, as I started to fail at things that I was working really hard on.  School, sociology and psychology are generally easy for me to learn but I started to fail and I was giving it all I had at the time.

I owed it to everyone I love the most int he world to pick up the pieces and try.  I have really bad days still.  I have days where I cannot get out of bed, I have days when my memory resets every 30 seconds and I cannot finish conversations.  All this still happens.

Guess what I figured out one day?  It is predictable.  YOU are predictable.  FMS is predictable.  I am not saying that flares happen on a schedule, or that you will know whether or not you have the energy to make it through the store…  Predictable, though.  You have to let yourself get to know it, because it is not going away any time soon.

It changed something fundamental in me the day that I figured that out.  I even remember what happened.

We live in the country and there are often random gunshots.  We live in a valley, and depending on where the shooters are, it sounds really close, even if they are far away.  I heard a gunshot and knew that my oldest was outside.  I went tearing out of the house, I was halfway to my kid when he met me and said, “I am okay mom, I knew you would freak out so I was coming to tell you I am okay”

It was like someone flipped a switch.  I feel like a walking ball of chaos.  I still do.  But realizing that day that while I feel this..  no one can tell.  The only time anyone is going to understand how you feel inside is another FMS warrior, or another person with chronic pain.

Stop trying to make them understand, before you have even figured it out for yourself.  As I said, I am a work in progress but I am more now.  I didn’t get better, I won’t get better..  But I am okay.  I push myself every day to love myself and stay strong.  You don’t have to lie about how you are feeling..  tell them when you hurt, tell them when they are are too loud.  It’s okay.

Most important of all though, is not to let guilt bury you.  Guilt over not being able to go on roller coasters, or guilt because you have no money because mom is no longer making a living, guilt because you overslept..  All of it is pointless.. absolutely pointless.

We have a disease that changes our whole life, but if you do your best to embrace the changes those around you will find it much easier to follow suit.  WE understand how you feel.  You are not alone.  You are never alone, there are over a million warriors.

Don’t be a statistic.  Find your best life.  If I did it, anyone can do it.

Live, Love, Fight…  and fight hard.

Death Preferable Over Fibro Suffering?

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Death Preferable Over Fibro Suffering?

I have seen way too many posts this morning where women are talking about killing themselves in roundabout ways, but still..  Don’t let this condition be the reason you die.  You can live with this.  You just have to find your new path, like I did.

I know that some of you may be alone, and see no other way out..  Here’s the thing about that… What do you prove by giving up?  Also, you are going to let this shit make you give up?

Fucking fight..  we fight..  I fight.  I have to.  I have found a new path, it took me 6 years.  It is hard to step out of that misery ball and make a life for yourself, but you fucking damn well can do it.

All the warriors need to stick together.  I am writing papers, and soon I will start to get media attention to our cause, I just need to figure out how first.  But you can bet your ass that I will.

One last thing in this post… There are people who are dying who would gladly take a lifetime of pain if only they could live.

You absolutely have to remember that even though fibro isn’t caused by depression, our thoughts and our state of mind have a lot to do with how we feel.  If you feel like all is lost, it effects the fibro nerves and effects how you feel.  This is true..

Think about when you are laughing…  You can bring the severity of your symptoms  down just by changing your thoughts, dig yourself out of that bubble, no one is going to do it for you…  But you can do it, even alone..  maybe especially if you are alone..  I cannot count the number of times that my sons have triggered a flare…

Life is still what you make of it..  I started by not thinking about my pain in an inhibitory thing.  I started baby steps out of the bubble of misery that I was in.  I failed..  a lot..

You should really watch that if you haven’t…  it’s a FAIL….  It happens, those sneakers cost me 130 bucks, years ago..  but still, they were mint condition…  now they smell really bad..

Loss?  Shoes, pride..  Gained?  My first video for creating my VLOG here..  and a funny story as well as a funny video on Youtube…

Life is what you make it, even if you have to make it around this condition.  It is possible to get to a happy place, at least a place where you are OK..  just follow along, keep reading my blog because I am still working out a timeline and figuring the steps that I took to get here.

Don’t give up and don’t be selfish, because suicide when you aren’t dying?  Selfish..  period.

Join the fight, help others however you can..  it means everything.  Don’t give up, get up, don’t think about what hurts, just get up and do one thing today that you haven’t done in a very long time.