Category Archives: Fibromyalgia

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.

 

 

You Only Have 18 Years to Raise Your Children. Don’t Waste Those Precious Moments Worried About a Condition

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You Only Have 18 Years to Raise Your Children.  Don’t Waste Those Precious Moments Worried About a Condition

Please read this one…  I felt a bit odd when I wrote it, like it wasn’t just me writing it… My Muse was strong for me today.

I realize that I have written before about kids and how fibro effects them.  As a mother, the amount of guilt I felt at the fact that I wasn’t healthy like the other moms crushed me.  I constantly tried to be more involved.  I constantly tried to do more with them.  I wanted to be the healthy mom that I thought my kids deserved.  My boys are 17 and 19 now and they have told me they didn’t mind it that I was sick.  They wanted me with them.  They want me in their life just like I am.  I’m working real hard on believing it.

With fibromyalgia I still managed to raise two amazing, successful men.  Did I cast a spell?  No.  I figured out that time spent together is more precious than anything else I can imagine.  I bet that right now you are thinking “yeah right! How did she find the time?”

See, quality time with your kids is simply time with your kids.  You don’t need to take them places or do expensive things with them.  Stay home.  Watch a movie together.  As long as you are togehter you are accomplishing your goal.

I remember ruined trips to fairs and carnivals and malls and restaurants..  well you get the idea.  I thought that to prove I was okay I needed to pretend that I was ok.  This is not only false, it is dangerous to your relationships.

Pretending you are ok will most certainly make you worse.  I just attempted suicide because I pretended that I was ok.  Obviously I wasn’t.

Kids are not stupid.  They can tell that something is wrong.  Be honest.  The only thing scarier than having a sick mom is having one that won’t tell you what it is.

There is a fine line that we ride every minute of every day.  Always wondering how much we should let them know.  Are we failing as mothers because we can’t run?  Are we failing as mothers because it is difficult for us to make plans?

My youngest son is a senior this year.  He was the drum major.  He was the lead in the play Les Miserables.  Jean Valjean.  He is in 4 AP classes and has a 4.0 GPA.  He does model UN.  He made it into county chorus.

My other son is the opposite of Ian.  Shelby is 19 and he works on cars.  He is very good at what he does and could write a book with what he knows about cars.  His eye for design is unparalleled and he is going to accomplish amazing things.  He is driven and focused and all this while dealing with ADD with no medication.  Amazing.

SEE?  They are both just fine.  My opinion?  Better than fine.  Oh yeah, and Ian?  He gets his Eagle Scout soon and created the STEM program that the scout camp uses to teach the kids science and technology when they come to camp.

I had three child development classes.  Your kids need you.  They don’t need toys or computers or cars, they need you.  It Doesn’t matter that there is a version of you that hurts and needs to rest because ultimately YOU are there.  It is only scary if you don’t explain what is going on.  They understand a lot more than you think.

My youngest graduates high school this year.  He is a super brainy genius and a lot of the Ivory league schools are after him.  Obviously, having a sick mom didn’t ruin his life; matter of fact I was able to be here with him every second that I can because I know that my time with him is ticking down.

My other kid does body and mechanical work on cars.  His eye for design is stunning and I see big things for him.  Thank goodness he doesn’t mind staying at home.  I don’t think I could handle an empty nest.

I gave those examples because I have fibro.  I hid, I was insane, I yelled, I stopped going out, I stopped seeing friends.  I laid in my bed and wanted to die for 2 years.  I hate that I could have spent at least a little of that time with my kids.

One day though?  One day you will look back over your life with your kids.  My memories are glorious.  We did what I could handle, I didn’t have any pity parties for my pain, we picked things that we could do and what do ya know?  Firstly, I am much better at getting around.  I love time playing my drum when we play music.  I am gloriously happy in my life.

 

The most important nugget that I want to leave with you is this.

RULES

BE GENUINELY HAPPY

I am gloriously happy most of the time.  I didn’t used to be.  I have had to learn how to stay happy.  I figured, why waste time looking all pissed off and wrinkled?  Life is way too short not to smile all the time.  Even if your teeth are kind of bad.

GET OUT OF YOUR HEAD

you are not dying.  Yes it hurts.  Suck it up.  Your kid deserves the best you can give them

KEEP IT SMALL AND SIMPLE

Don’t go to Hershey park or a concert.  Stick with things that you can do

REMEMBER THE BRAIN FOG

There is no reason not to have a helper with you when you go out for the day.  I get do confused sometimes, a good road dawg is important

USE COMMON SENSE

I know that it sucks to have go think of all the extra crap you need when you are going somewhere because of the fibro.  I suggest you just deal and don’t let it upset you.  I have no solution for this, we need a lot of stuff because well, because fibro.

Important to note here that when you are getting your stuff ready to go and you find yourself getting confused, call your road dawg (friend).  When I call mine I tell her it is a Sanity Check

REMEMBER TO LIVE OUTSIDE YOUR OWN BODY

Our bodies can betray us and cause us to feel as though we are in a battle with our own soul.  The pain etc; that we have to endure is unthinkable to most people.  Yet here we are.

This is a constant battle for me.  Trying to live without thinking about my physical condition as all times.  It is a fight I actually win every single day because I beat it.  I am in charge of what and how I think.

I am happy to be with my kids in the time I have left with them.  No matter the ages of yours, spend the time.  Get to know them.  Learn how to play Halo.   You will regret it for the rest of your life if you do not.

This is NOT hard

The clock is ticking, one day they will be gone .  What will your memories look like?

You have the fight.. You can lift a mountain, if you needed to, to make sure that your kids are happy and feeling safe.

Suicide…? WTF?

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Suicide…?  WTF?

I have always thought that I was impervious to silly antics like suicide or shaving my head or..  I don’t know…  all that “crazy” shit that only insane, weak people do.  I always thought that people who committed suicide were selfish.  I could not have been more wrong.  They are in pain and out of touch, I barely recognized what I was doing.  There is no such thing as insane, and I have never met stronger people than those that I met in the pysch ward where I went after my attempt.

I took a pair of scissors to my wrist Friday…  in the deadly direction.  Luckily the scissors were dull and I only managed to barely open the skin. It was simply luck that the scissors were dull, if they wouldn’t have been, I would have been in real trouble.  As it was I scared myself enough to go to the hospital right away.

I certainly didn’t wake up and decide that I had lost all sense of myself and it was time to die.  It was a months long process of losing touch with myself.  Months of trying to come to terms with devastating information about fibromyalgia (My brain is aging 3.5 faster than healthy humans).  Months of feeling out of touch and like I was drowning.  Knowing you are going to lose your mind is a special kind of torture.

See, it is not abnormal to fantasize about killing yourself.  When I was depressed and I was first afflicted with fibro I fantasized constantly about how I would do it.  I never meant to do it.  At that time I never would have tried..  This time I tried.  Maybe I didn’t try very hard, but I tried and that was enough.

I couldn’t see a way past the excruciating nervous pain.  I resigned myself to feeling like shit because I do have fibromyalgia.  I thought I was doing the right thing by accepting the cards dealt to me by fibromyalgia; accepting that this was it.

I have fibro and that will never go away and I will never feel human again because I have this condition.  That said, I am damn sure not letting this bitch win.  I am not always stronger but dammit I will fight as hard as I can every single day.

I realized on Sunday morning when I woke up in the psych ward that I could do better; that I could be better.  It is up to me.  I know that there will be days that I feel like total shit.  That doesn’t matter nearly as much as I thought it did.

Every single day is a chance to try harder.  Every single day is a chance to practice skills that are complicated (plans, appointments. lunches with friends).  Every single damn day is a chance to make something beautiful happen.  I have to force myself sometimes but I have never once regretted keeping my plans or forcing myself to go out.

The people that want to see me don’t care that I cannot do anything physical.  They want to hang out with me.  So I have to sit or try to participate and look like a special kind of Broken Scarecrow Clumsy McFalldown.  Point is, the game has changed, you just need to learn the new rules.

The fight is what matters.  The harder I fall, the bigger the comeback..  I broke, I was done..  However, look out..  I found her and I am ready to live.  I hate that I wasted so much time.

The things that do matter?  Well, those are easy.  I have an amazing husband who would do anything in the world to keep me happy and healthy.  I have two amazing sons who are both so successful and amazing human beings that I can barely believe I was the one that raised them.  If I accomplish nothing else, I will have accomplished them, and that is enough.

The things that matter to me alone?  Well, those things I need back.  I need to create, I need to write.  I need to love myself.. big belly and all…    It is vital that I wake and give thanks for another day in this beautiful universe; connecting with amazing humans and loving every fucking second.

I am telling my story because it is important to note that you cannot always tell when someone is going to try to kill themselves.  You cannot always tell when you are going to try it.

When I cut myself I watched it form a line of blood on my arm and it was like I was watching someone else.  I was so far away that if it had been a better pair of scissors I may not be here to tell this story at all.

I bare my soul and I write this post because every day people are taking their own life.  No one can or should ever judge them, or think they have them figured out.  No one can judge those that need help in a psychiatric hospital.  They aren’t weak.  They aren’t selfish.  They aren’t at all what most people (even myself before) think.  They are fucking brave and scared and they simply need a hand.

Be a friend.  Love one another.  It was hard to love everyone in the hospital with me, but once I tried I came back to myself and I was able to come home.  Love is vital..  love is life..  breathing and love, and many beautiful hugs…  also music.  the important stuff.

 

 

 

 

 

Starting Over…

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This is the hardest thing I have had to do in my entire life.  A lot of these posts were made while I was in school.  Well, school fucked me over so I cannot finish my 20 credits it will take to graduate.  They are calling me wanting money and frankly that pisses me off.

Whatever you do, do NOT and I repeat NOT attend a for profit college, they will rip you off.  Not by hundreds of dollars, but by 10,000 dollars…  From nowhere.  All of a sudden I owed this money and no one at the school will speak to me.  Shocker.

This happened months ago, so my anger is nearly gone.  I am just sad and broken.
I have fibromyalgia and from what I just read, it won’t matter that I go to school because I am going to forget it all anyway.  When people have FMS their grey matter melts away.  I am looking at pissing my diaper by the time I am 60 and I won’t lie, that one is a bit more difficult to get over.

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It would be different if my partner in life (husband) would be supportive, but no such luck.  He refuses to do more research and insists that I am wrong.  Others just tell me that if I do brain exercises it will help.

The thing is, I read the articles, I did he research and I am screwed.  I wanted to leave my house.  I wanted to walk away so that they don’t have to watch me lose my fucking mind.  I got screamed at, that I was selfish.  I am not so sure that I cannot be selfish here..  I am losing my fucking mind.  How many hugs do you think my husband gave me?  One..  One fucking hug and I had to ask him for it.

I don’t have anyone to turn to.  No one wants to talk about a thing that is so terrifying.  No one wants to know that I am losing it, mostly because they are so scared that it might happen to them, I suppose.

I am close to suicide every minute of every day.  I don’t want to shit my pants.  I don’t want some stranger wiping my ass for me.  I can’t.  I won’t.  I don’t know what the answer is yet, but dammit, regardless of what it is, I will make this stop.  I refuse to live in a diaper.   When the very people screaming at me not to go, I wonder how they would feel if they were in my shit filled velcro shoes.

I am only 40 years old.  Fuck me…  I gave my life to my family and my kids and my husband and now I am mostly alone in the knowledge that I am losing it because no one wants to talk about it.

I am up in the air when it comes to making a decision.  I know that I am losing my shit now that I know the truth about FMS.  I have to try and calm, down and make a decent decision.  I love my family so much, but I know that all they want is the old Tammie back.  I wish she existed.

 

 

 

I Want to Start a Commune for People With Fibromyalgia as we are the Only ones that get it.

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I have several topics I wanted to cover today.  I have started taking my notebook with me everywhere so look out warriors…  I have a lot to talk about.  Today I want to talk about injuring yourself and your relationship with your family.  This is obviously two very different topics, but they run together in my mind.

First, injuries.  I fell last thursday and rolled my ankle really bad.  I stood up, added it to the mental pain that I ignore, and continued on my merry way.  See, as you warriors know, we live in such extreme pain all the time, the new stuff doesn’t even phase us.  (mostly)  This is dangerous and we need to be careful.

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I hate the doctor, I know you hate the doctor.  I LOVE my doctor, but I still hate going.  luckily I have a good one.  Now, my ankle kept swelling and wasn’t getting better at all.  I went to Xray and it isn’t broken but it is on of those sprains that are worse than a break.

If I had listened to the voice in my head, the one saying “Meh, add it to the list” I would have had another body part that hurts forever and warriors, dammit if we don’t have enough of those.  So, even if you feel like an ass hole, GO TO the DOCTOR..  You can prevent new pain if you just go.

FAMILY TIME

Now, I am giving advice that took me years of fights and pain and anger and hurt feelings.  Hopefully, you will listen to this advice and it will resonate enough with you to make a difference.

When you get fibromyalgia you are like a leaf blowing around down the street with absolutely no idea where it is going or what it is going.  All the medical texts in the world do not help.  Trust me, I have a bachelor degree in psychology and I can explain what goes on in your brain, but that doesn’t make it any easier to understand.

Thing is though, you can live with it.  You can learn that even though you feel like your body is a giant wrecking ball of anxiety you can find a way.  I did and if I did, anyone can.  I should add I have horrible days.  I am NOT better, I just handle it in a way that works for me.

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I cannot explain why in the beginning everything is fucking terrifying.  I remember my husband making me take my son places because he figured that if I drove I wouldn’t be scared any more.  He was so very very wrong.  Not being able to deal with arguments from your kids…  damn, that needs a new paragraph.

Before you reach a place of acceptance your kids are going to drive you crazy.  Deal the best way you know how.  I would try to talk, that is what always worked for me. But once the fibro was bad I couldn’t make the right words come out.  It felt like I was speaking Arabic and they were speaking english.

That was when I ran away and stayed in my room.  I was not effective as a mother and that made me die inside, but they were better off that I hid until I got my self back..  well the new self that is.

The same thing can happen with your husband.  It is impossible at times to make the words in your head come out of your mouth.  I type..  it is why I write.  I can write fast enough to keep up with my brain.  When I try to have a conversation I find myself stumbling over words and if I am angry it is even worse.

If you start having the conversation with your loved ones and you find yourself saying “I just don’t understand” a lot, walk away, nothing is going to get accomplished in that conversation..  Trust me I have tried..  bad idea..  walk away.  Explain, you are not turning your back forever, you just need some time to cool down.

When this is happening, walk away.  I know that we should not walk away from arguments, but they were not talking about fibro.  Take a minute, type out what you are trying to say.  I should add, this was the absolute hardest part of my journey.  Learning how to communicate with my loved ones was a long arduous process, but you can do it.

Now, to the pain and talking about fibro and what you can’t do..  do other things.  On your own. try things with your family, plan outings where you are going to be able to sit down or rest.  There are a million things you can still do.  I promise.

I went to Artscape in Baltimore on the hottest weekend we have had all summer.  I had my cane.  I sat a lot.  I was very hot, but I swore before we got out of the car that I WAS doing this.  I WAS going to have a good time. I had a blast.  3 miles that day, with a LOT of water, shade, and breaks..  but not only did I do it, I had a really good time.

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Live, love, and fight for your life, you can still have one.

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Do I Look Fat to You?

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Do I Look Fat to You?

I was just outside thinking and enjoying the weather.  It is my anniversary weekend with my amazing husband.  We have been married for 19 together for 20.  We have raised two amazing boys.  We love each other.  He loves me, even though I am sick and so many husbands/partners run for the hills when their mate becomes ill.  Not my husband, he works even harder because I have not been able to work.

I was thinking outside about selfies and that people make fun of selfies, but that for someone like me it is a really big deal to post a picture of yourself for everyone to see.

I figure they all three deserve the best version of myself that I can possibly give them.  Back to being outside thinking.  I was thinking about how much weight I have gained, but how lately I have been dieting pretty hard.  I don’t have scales, why upset yourself on purpose?

I know I gain weight by what I can get on..  Like when my underwear starting curling and falling down, I figure I am gaining and it is time for new panties.  That sounds very simple but it has been one of my greatest losses, my thin self.

I have gained around 80 pounds from medication.  My meds all say “will cause weight gain” so I figure that added to the fact that I can barely walk I would indeed gain weight.  I was not prepared for how it would make me feel.  I can’t STOP thinking about my fat chin.  Well, couldn’t..  until recently.

I was out at a bar with my hubby and friends and there was a fluffy lady sitting beside me on a bench outside.  Someone went to take a picture and she shied away and said, “please don’t take a picture of my double chin.” I realized I was sitting right there and didn’t think once about her double chin, even though I was obsessed about mine.  It’s in OUR heads, not others.  It’s about how we perceive things. I told her that.  That I think about mine constantly, but other people don’t look at me and think..  “ooh, double chin”…

Here is the magic part, we get what we put out into the universe.  Like the secret, only not bullshit.  It’s ancient, the thoughts that we have, even if we don’t say them out loud, are our reality.  It’s up to us if we want to change our own reality.

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The reason I talked about the selfie is because it may be shameless, but I like that word..  Shameless..  and I also like the fact that I am happy enough with myself to post pics on the internet.  It takes guts to put yourself out there.  So be shameless, post that pic of yourself.

Remember this one thing, it is in your head.  You are in charge.  People absolutely love you, no matter your size.  The people that you love?  They deserve someone who loves themselves.