Tag Archives: help

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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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.

Starting Over and Over and Over and Over. I am tired. I thought I wanted to give up.

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Starting Over and Over and Over and Over.  I am tired.  I thought I wanted to give up.

I barely remember what it was like before fibro.  I know that I could take a shower and not need a nap afterward.  I could keep up with my friends and my kids when we went out,.  I could ride a roller coaster.  I could run.  I could create, and I could find a job that suited me.  All of those things are gone.  You don’t appreciate what you can do, until it is all taken from you/

I compensated.  I started to attend university.  I even double majored in sociology and psychology.  I am 20 credits away and suddenly I don’t get to finish unless I give them $10,000.  Yeah, you heard me..  10,000..  Yeah, like I have that.  I have never in my life had that much money.

It was disheartening to say the least.  I was suicidal.  School is what made me feel like a human.  I figured I could graduate and help others with my knowledge and skills.  I won’t be graduating now, however I am finding more and more that the credits are all that I need.  That is the one piece of good news that came out of this.

The other bit of good news, for all warriors is that it is possible to lose something so big that it was your life and find your own way to your next thing.  We have to keep our brains working.  We have to stay as creative as possible.  Seriously, find some sticks and hot glue them together..  who cares what it looks like?  You had fun doing it.

I still fight the pain in my gut.  I gave the school 5 years of myself.  My family is supportive.  There have been many times that I have had to do school and missed some of their stuff.  I can get my transcripts and finish class by class (yes, at a totally different school).  I have a plan.  I am just waiting for the fire under my ass to get myself past this tragedy.

I laid in bed after I found out and I went back to my old ways..  fantasizing about how I would kill myself.  I know I am a wife and a mom but that doesn’t come into play when I go to these dark places.  I truly figure they are better off without me.  Shit, I worked my ass off and I can’t even make college happen.  I can’t stay in this place for long, it seems like an insult to the universe.  I would never do it..  but the fantasizing has gotten me through some dark places.

I have things to offer.  I help people.  I have been given insight and gifts that will help many.  I recently found out that I have more to give.  I am not worthless, I am simply being toughened up.  I am learning how to fight for what I want.  I am learning that I am worth it.

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So are you.  Right now, every time I start to think negative thoughts I find something to do.. There are a million things you can do.  Not for sale..  just for you.  One step at a time, one project at a time.  That is the other part.  Instead of looking through the mountain that is my craft stuff, I know what it is that I want and I get the stuff for the current project…  then I don’t leave piles of craft supplies all over the house, with no idea what the hell I was thinking anyway.

The whole point here?  You can’t give up.  Life is going to hit you hard, it just does when you are already down.  I don’t know why, but I do know that I have to take this time to grow and learn and make myself even stronger.  Yeah, it feels like “surely this is the last test and I shall rest and be ok for a while” but guess what?  It doesn’t.  However, it is all in how you handle it.

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I cried with the school thing..  I took a month worth of xanax in a week and a half.  I was wrecked.  I didn’t think I could come back from this one.  In some ways I think I haven’t.  I am more confused than before.

Water is healing, cleansing and amazing to meditate in…  this is me just the other day..  it was the bump I needed to get myself back in the game.

I can’t remember the day or really random things that I should know.  BUT I am back and I am painting a chair and I am. once again, working the baby steps technique.  Thanks for listening..  always remember you are not alone.

Friend me on Facebook…  PM me..  I am good at what I do and I am here to help if you need it.

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.

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.

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.

 

Pheonix Rose… First VLOG and some other stuff…

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Pheonix Rose… First VLOG and some other stuff…

So I did my first video.  It has taken days to get it on here.  I have no idea how to work most of the things that I have, so it takes a long time to figure it all out.  Click here to watch the video.

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Click here to watch my first VLOG

My husband saved my life last night.  Not in a metaphorical “oh my goodness you brought me chocolate” sort of way either.  He literally saved my life.  I choked.  He saved me.  I am very sore today but every time I twinge because of the pain I am not upset, like usual I am grateful to be here and alive.  On a much higher level than usual, in this case.

I tell you this because swallowing is difficult for some that suffer with FMS.  Be very careful how and what you are eating when there is no one around.  I don’t want to give you warriors something else to worry about, however it is vital that I warn you.

Now, in the video I talked about when we are speaking to someone, in person or on the phone.  If you find yourself getting lost in your words, apologize and tell them you have a neurological condition that makes words difficult.  DO NOT say fibromyalgia, people can’t help themselves, most of them stop listening at the mention of that word.  I have tried it several times, I was just on the phone with the police and used “please bear with me I have a neurological condition that makes words hard”..  it has worked without fail.  No one has been short with me on the phone, or in person.  Also, I can continue my rule for life, never say the F word.  Not fuck..  who cares about that..  but fibromyalgia..

I also talk about chest pain.  I have a link that talks about what we are really feeling.  It is not a heart attack.

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Click here to learn about FMS chest pain

I also mention a notebook as well as your phone.  If all words are hard for you, write down that you have a neurological condition, or have it handy on your phone.

When I think of ideas for what to write here I have to use a notebook, because by the time I have gotten to the proper place on my phone the idea is gone.  We have also made excellent use of a white board.

I Just Woke up, Why am I so Tired?

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I Just Woke up, Why am I so Tired?

Because fibromyalgia.  No matter how good I get at handling this disease, no matter how functional I try to make myself be; it never fails that I have impossible days.

Days where I wake up and want to go directly back to sleep.  Days when my first trip out with the dogs feels like my legs and lower back are crushing..

I have days where I am sure that there is more gravity, because I have never felt so heavy in all my life.

Days where my hands are so swollen I am glad that I took off my wedding rings over a year ago.  Days when all I want to do is crawl back in bed.

Days when I just KNOW that I will be having a whole pot of coffee before noon, just so that I can stay awake.

These days are not the ones for deep thought, or learning.. but I have to.  I have school to do, and my spiritual path to follow.  As I am sure you, the reader, have that much and more.

 I talk to ladies (I just haven’t spoken to a man who has this yet) who have a job.  An actual wake up and go to the job, job.  I quit mine years ago, and we have struggled financially since.  However, I cannot imagine holding down a regular job, even if I got to sit.  The only thing I find myself being good at is helping my teenage sons and their friends in emergencies and typing.  Oh, and I am learning, I am actually learning stuff in school.

Not math, I don’t remember a damn thing about that class.  I only cried once.  I remember statistics and I wrote down all the little symbols so that I could understand what the numbers say.  Yes, I still need my little chart of symbols..  no, I don’t care.

There is this huge mystery that surrounds this disorder… When awake my brain skips around and seems like it is going so fast..  and yet my body won’t move.  This is a disorder of contradictions if ever there was one.

I am so grateful, that even when my hands feel like they want to fly off my arms, like my arms are ketchup packets and someone is stomping on them, my hands feel like the bit that is about to let go and let all my “ketchup” fly out.

The pressure is intense and can be scary if you let it.  I just remember, no matter what, that this is not killing me, this isn’t even injuring me.  It is JUST PAIN, it can’t hurt me.

I have plans for these days, as part of my “FMS you can do it” plan.  I make plans for my day that include a lot of sitting.  If I know that I have something later in the evening, I will surely take a nap, it is one of the contingencies that allow a nap.  Also, when I feel like the ONLY thing I am able to do is sleep..  I sleep.

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The thing is, those times when I feel like I just want to sleep?  There are things, other than coffee that can keep you awake.  Not at nap level 10 of course..  but if you are sleepy and bored, go exploring.  Go outside.  It is so good for us to be outside.

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Click here to go to a site with guided meditation.  I swear..  I spent years thinking this was bullshit.  It isn’t.  It will help you.

Or you could find a game to play on your phone or your computer.  There are games out there for every person.  You will find that when you reach the end of your day and you have changed ONE thing, no matter how small, it makes you feel good and it makes it easier to do more the next day.

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Click here to go to a site that teaches you about grounding yourself

This is my process and I am doing okay.