Tag Archives: flare

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.

 

 

But I am Terrified to Answer the Phone..

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How do you explain to someone that you are terrified to answer your phone?  This could be a number we don’t know, or one that we do.  I know for me, sometimes even if I know the person, love the person, and want nothing more than to talk to them, I get railroaded by this terror that stops me from answering as well as calling them back.

It doesn’t take a genius to figure out that I know if I am not typing I often lose track of the conversation and it has gotten bad enough that I don’t like talking on the phone at all.  In person is different, you can see me trying to find my words.  On the phone however, I just sound like I need a rubber room.

This is why I type, because I can generally keep up with my brain that way.  My brain races so fast that the only way for me to effectively communicate is by typing.  Even then I do what I call “running out of words” or “being broken”.  This occurs when I have been straining pretty hard mentally.  It’s like BAM out of order.

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I am a proponent for reaching outside of your boundaries and trying new things.  This is where I draw a line.  You are allowed to have those.  Boundaries that you know will remain difficult for you.

I hate loud noises and they make me fall down..  slowly…

I hate bright light, again, I fall down.

Crowds, NOPE

I suppose if we were doing 50 shades of grey this would be the hard limits.  Don’t get too rigid, this is a bouncy list..  There is no way that you can avoid being triggered, the best that we can do is our best and that is it.

If you are surrounded by people that care about you they will see you trying.  I didn’t think mine would, but they did.  That by itself soothed a lot of bad memories and feelings and we are all closer than ever.

For the people who still think that we are weak, or lying, making this up, need to lose weight, you name it..  for all those people we need to fight to be the best version of ourselves.  I love all the ladies on my page Fibromyalgia can be funny group on facebook.  We share our lives and help each other.  All these groups are wonderful.  In my post about screw the Facebook is Fake group I included links to the other groups.  I may have missed a couple..

Click here to check out that other post

Always remember, warriors…  live, love, and fight like you mean it.  Don’t let this crap get you down.  Do something that makes you laugh.  Hug someone you love, even if it hurts a little.  I hate the mental box..  let’s kick it down and run, well okay, walk…  slowly… looking a little bit funny… and discover what we are capable of now.

How to Christmas When you Have Fibromyalgia…

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How to Christmas When you Have Fibromyalgia…

Yesterday I lost one of my best friends in the whole world.  We had to put Puppy, my little dog, to sleep.  He was crying a lot and he was cold and he gave me 13 years of happiness and joy.  I will miss him forever.  I managed to type that without crying..  Good sign.

Christmas is coming this week.  Just a couple days away.  I usually don’t talk about it or think much about it because every year I was going to places where I didn’t want to be and I was surrounded by people who I don’t like all that much.  This year I am making Christmas suit me and I encourage all you warriors to do the same.  I am seeing the family I want to see, and I am actually excited..  all that because I designed my own ideal Christmas.  I strongly encourage all of you to do the same.

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I have seen some horrible news on the boards, people dying..  One ladies house was broken into and all her gifts were stolen as well as all the food she had ready to cook on Christmas day.  This is the thing of nightmares.  I cannot watch people suffer so gruesomely and allow my day to be ruined by people that I don’t give a shit about.

Warriors!  We are messed up.  Our brains are a bit broken, and we get all the wrong signals, all the time.  I refuse to suffer all year long, then, on what is supposed to be the happiest day of the year, spending it doing things I don’t want to do.

I know that for some of you simply not going isn’t really an option.  However, make a mental list, or even write it down.  What are the things that you worry will set you off?  Walk away..  go to a different room.  Go outside and connect with the earth.  Breath slowly and picture white light entering the top of your head, traveling down through your body and into the ground.  Do this for at least three minutes.  Breath and connect..  breath and connect..  Then try and deal again.

If this isn’t working, leave early.  Claim an upset stomach.  whatever you do DO NOT let those around you make you feel guilty for being ill.  They have no idea what it is like and they can kiss your ass if they want to make you feel small for what is a HUGE issue that stole your life.

Yes, fibro steals your life as you knew it.  Most days I talk about how to help mourn those losses and have a happy life, this post is about having a good Christmas.  People are dying, getting robbed, getting arrested…  this means if your day starts normally you are already having a better day than a lot of warriors.

Protect yourself.  If you have a shit day everyone in your immediate family will too.  They are the most important.  If you have to lock the doors and stay home, do that.  Make Christmas a good day, no matter the steps you must take.

I Need an Adult!

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I Need an Adult!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Doctors and Fibromyalgia is a bad Word

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Doctors and Fibromyalgia is a bad Word

My Aunt thinks she has fibro because she has a sore back, and since her doctor cannot find a real reason for the pain, he says that it is FMS.  She is a dentist assistant and spends her days bent over patients..  Two things:  ONE, I don’t wonder where her back pain comes from and TWO no way could I do that work, even for one day because I DO have FMS and it is raining today.

My fingers look like hot dogs.  They have passed right by sausages and they look like hot dogs.  My arms and legs feel like I have entered a different atmosphere and they are heavy, like lead weights, like there is more gravity.  I have pain in my belly, I don’t know if I am about to shit my pants or start my period.

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I remember when it was new and I would try to find words to tell my husband what I was feeling.  What it felt like when my body would really flare and it felt like my skin wanted to catch fire and fizzle off.  One of the reasons I keep this blog, husbands, partners, kids…  this is not made up..  I know you can’t see a thing, but inside is chaos.  It is in our brain, so if that is what you mean by “all in your mind” then you are right.  However, I know that is not what you mean and so does your loved one.

There is nothing harder to hear than the people you love most in the whole world telling you that this thing, these things, that are taking your life from you are “all in your head”..  I am still working on getting over my anger at being told that by my husband for years.

NONE of the pain with FMS makes any sense.  Only someone else with FMS would understand that during a conversation with me I might skip out and forget words.. or totally forget what I was saying in the middle of a sentence, they tell themselves that I am high on “the pot”..  What they don’t know is that if I want to complete a sentence I have to be on that medication.

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Besides all the issues that we have with our doctors, I also think they are the problem and they have made our suffering easy to dismiss and ignore.

Every single person who truly has FMS knows that I advise against telling ANYONE that you have fibro.  You tell them you have a “neurological condition” and this is because when you say fibromyalgia to someone their eyes glaze over.

They think they have heard it all before.  They don’t understand that once your symptoms are bad enough, it takes your whole life from you.  They think about people like my Aunt, who’s Doc says “Meh, I can’t figure it out, must be FMS”  NO, NO it isn’t….  it took me four years to get diagnosed by a rheumatologist.

I insisted to him that I was not depressed.  I know depression well…  and even though I tried to stop my heart with my mind every day for years, I wasn’t fucking depressed.

I used to dance.  I used to make jewelry and sew.  I used to be a DJ, spinning real records..  I cried for the loss of these things.  I cried because I was losing the ability to do every single thing that I love.  I cried because my family thinks that I am a lazy pothead.

They don’t care that I use cannabis because it is better for me and for my pain than losing my soul to any opiate, that won’t work anyway.  FMS patients have broken opiate receptors, which is why such medicine might make you not care, but it isn’t helping your pain at all, nor is it helping you sleep.  It is simply stealing your life and your soul.

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Don’t despair warriors, you are not alone and I attend university online to get some letters behind my name because if you reference back to Fibromyalgia 101 I have studied tests that are being run, not in this country, but in other countries where they aren’t worried about hurting Cymbalta sales.

By the way, beware the anti-depressant.  FMS is NOT caused by depression.  Again, please reference back to Fibro 101.

I have to end this here, just my thought of the morning..  I have those every once in a while..  Hang in there warriors and be amazing to yourself today.