Tag Archives: better

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.

 

 

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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.

Shut up I am Talking to you…

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Shut up I am Talking to you…

We all have those people in our lives.  People that we care about.  People that we want to be close to.  Yet, it is very hard to feel close to someone when they seem to be ignoring our extreme suffering.  When they dismiss you.  When they suggest you lose weight, when they blame it on the weight, or they send you links to helpful pages like this one:

Thing is,  doctors do know the cause and it is none of these things.

Thing is, doctors do know the cause and it is none of these things.

Now, I dearly love the person that sent me this link.  I appreciate that she thinks of me at all.  I have learned that we need to be happy with what they choose to give us.

It’s super easy to stay away from that person, and warriors are losing friends and possibilities at making life better.  The thing is, I have given this a lot of thought and I think there are four main types of friends when you have fibro:

1) The ones like my husband, he has seen me go through this process and start down the path I am on now.  He seems to get me, even when I don’t get myself.  He can keep up when I am speaking.  We have bends in progress, but we have adjusted so that we can communicate more effectively.

2) The people who think that it is real, like my mom.  She has seen me way too ill to deny that I have it, but just cannot believe that there isn’t ONE pill that can make me all better.  They have no idea.  When I hit the ground near my mother she reacts like, “there is no way a condition can do all those things” It doesn’t matter how many articles I have sent her..  she says she will pray and if I let Jesus in, it will take it all away.

3) The ones that think I have spent 6 years “making it up so I could stay home and smoke pot all day” grrrrrr I have nothing further to add to this except the following: you can bet your sweet little ass I would have pretended to get better a long time ago.  grrrrr

4) Like my mom, this last type also believes that you have fibro, but they send me links to articles like the one above on a web page dedicated to home grown foods, organic, etc.  I try to explain that having fibro causes a lot of those very things, listed in this article..  but it doesn’t seem to register and it is hard not to hurt their feelings because they truly care about you enough to post the article to you at all..

I know there are many more, but I don’t care about them, I care about us.  The warriors in the trenches, just dying for a day without pain, praying for someone to be able to understand what they are going through.  It is not our job to make them understand.

Find people who get it however you can, but don’t expect anyone that isn’t in chronic pain to understand how we feel.  On an even deeper level, Fibro is so much more than pain.  There are thousands of us on social media, making friends, growing a network of support.  So what if your support system is a digital one..  we get to live in a time where this is possible so mount up and join the technology revolution for what it can do to help us.

Love the people who try, no matter how frustrated you get, understand that the ones trying to help love you and have no idea what to do.  Tell them.  Let them know what makes you uncomfortable.  Show them one of the following63989_784118231626979_2964433165183062052_n

or this one

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Or this one

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As always, read around on my blog here, I talk about a lot of struggles like these and what works for me when I went through them.  I found that I could type the words and make a little bit of sense.  It is so hard when you have fibro to connect your out loud words with the ones you are thinking in your brain.  It gets all jumbled up and hard to express yourself.

Then you are in a fine pickle, because once your heart rate goes up (because you think you are insane), then everything becomes even harder to understand.  Even more difficult to express your words correctly.

Sometimes thinking.  I have been in fights already with my hubby and kids and I would say over and over that I didn’t understand, and they would get so pissed off at me.  I truly didn’t understand..  We are still working on that one, but we have all learned.

You won’t learn without fucking up.  Thing is, so fucking what?  So what that you seemed insane or drunk when you were out in public, especially if you cannot hold yourself up.  I laugh my ass off when I go down.  I make sure that I do.  I know that I am headed that way so watch the following clip from bridesmaids.  It’s a little gross, but HILARIOUS…

At the end, when she is crossing the street and going down she says “It’s happening”..  well that is what I say now.  Both me and my hubby.  It is like a secret joke.  However, the intended results are hilarity and laughing because I love the above scene.

So, screw it if you shit in a sink, or laugh when you fall down…  or if you seem drunk.  We suffer enough, other people can keep their own shit and just let me deal with mine.  I am full up with trying to live the best life I can and if someone can’t get on board, assign them a category and try to be understanding to those that mean well.

I am not a Suicide Bomber, I am a Mother

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I am not a Suicide Bomber, I am a Mother

I am not a suicide bomber..  but I am a mother.  It is kind of the same thing.  In one, you strap a bomb to yourself and you die for a cause, you give all of yourself to the cause and you lose everything including your life.  Being a full time stay at home mother who has given nearly 18 full years to two humans has taken me away from myself.  I have been blown to bits in the wind, because now they don’t need me and without that job, what else is there?

To be fair, I have had severe fibromyalgia for 6 years.  It is tough overcoming having a sick mom.  I am digging myself out of a hole they can’t even see is there.  They know that I seem better, but of course they may never see the work I am doing on myself.  They might not even notice because they aren’t in a war with their own bodies every single day.

Much like a bomb would, they sometimes rip my heart out.  I literally threw myself on a gun to protect them.  This wasn’t even a week ago.  I am so used to putting everyone ahead of myself.  I was to be the only one shot that night because meh…  who cares about me?

I was just talking to my best friends, in a chat we have had for months and months on Facebook.  They reminded me that while it was what every mother would have done; it was a matter of myself feeling like the one with no worth, the one the world could do without.

I was upset, I am very scatter brained.  Then I realized that I had done it.  I had lost myself, because of guilt over an illness that is not my fault.  That doesn’t make any damn sense does it?  I did nothing to get Fibromyalgia, doctors don’t even know where it comes from.  Yet the guilt I feel has driven me below ground, feeling like my life is unimportant.  No…  no way, we gotta work on that one… IMMEDIATELY

I have worked hard to overcome this condition, I don’t care who notices, I don’t care that they don’t notice the work I have done on myself.  I simply have to remember that I do count.  That I am someone.

I need to create my own self worth again.  I need to find it.  I blog for fibromyalgia because I have figured stuff out..  I help people.  Every single day.  That is worth.

I say I hate money, yet because I bring none in, I let it steal my sense of self-worth.  I hate money and I don’t care if I never make another dime. It certainly should have nothing to do with my value.

Self-worth is knowing that you have an important mission in your life and maybe all mothers feel this ripping feeling when their kids are 18 and acting like ass holes.  Maybe all moms feel like, “holy shit, I gave my life to that human and they are hurting me and breaking my heart, I must have done something wrong”.

I am not a suicide bomber and I am not a pushover.  It may take a while to feel like I am worth something, but work on it I shall.  Watch out world, this bitch is just getting started.

Every mother needs to keep a locked box in her head, where she keeps herself.  Don’t lose yourself to your job, or your kids, or your partner..  It is really hard to get that self back once you let go.

 

Death Preferable Over Fibro Suffering?

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Death Preferable Over Fibro Suffering?

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

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

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

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

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

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

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

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

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

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

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

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

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

Live Your Best Life, Learn who you are now…

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Live Your Best Life, Learn who you are now…

Hello warriors.  I think this is a post that I have been waiting a long time to write.  I have a lot of things to say that are pertinent whether or not you have Fibromyalgia (FMS).

First of all I have a story to tell.  My whole life I have been worried what people thought.  Even when I said I didn’t care, I was able to hide the fact that I cared, but I still cared very much, so much that it would almost be the only thing I would think about for a while.

After the FMS got so bad I was so fucking hurt because everyone who was supposed to love me thought I was insane, or faking, or just being lazy.  It killed me that people thought that.  I would spend days wondering why.

Why won’t my mom help me get to the doctor?  Why are they saying all these awful things about me?

I found that this is a total waste of time, and you are going to be sad because of what someone else thinks?

NOPE…  WRONG, you have a disorder that has stolen your life.  It cannot be understated how devastating it is to lose your ability to do nearly everything you loved.

No one will understand this, except for someone who has been through it.  FMS is a special case because there are so many things that people simply cannot understand, hell I can’t make any sense of it.

Whether you are sick or not it does absolutely NO good at all to worry what others think.  It is a process to get to a place where you truly don’t care, but I am 38..  it took me this long..  I had an amazing experience yesterday that taught me better.

We went shopping at Walmart, which is a trial when you have FMS.  I had a great time.  I thought I would have to use the auto-cart that you ride around, but I made it.

When I speak about the zombie couple at Walmart that just look like they are miserable nearly everyone should know what I mean.  It is chaos in the store and they were with two small children.  Their little girl still had her Hallows Eve costume on.  She was wearing a bright blue wig.  I should post a picture of me here…

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This is what I look like from the back.  Of course, yesterday I was a bit less….  fluffy….  however, I have baby dreads and they are a mess most of the time.  I have some wrapped and it is a colorful mess and I love it.

This pertains to the couple in Walmart because when I walked by I said “I want blue hair”.  They turned to look at me, I could see out of the corner of my eye.  They were miserable.

 I passed them and they turned to look at me and saw MY hair.  They started laughing at me,  really loudly.  Not giggling, laughing and leaning on each other and having a beautiful, unexpected moment together because they were making fun of me.

I waited for the pain.  That pain that I used to push way back, yet still obsess over.  I waited and it never happened.  I smiled.  I thought it was amazing that they were laughing together.  I didn’t care one whit, for the first time in 38 years, that they were making fun of me.

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They were making fun.. those are the words I took from it.  They were laughing with one another.  Sharing a moment.  I am so happy that I was the catalyst for that.  Oh yeah, and by that time I was doing the FMS shuffle walk…  I will have that video posted here later, my version of the “shuffle”.

One of the first things I learned about FMS was that it changes how you interact with people.  It changes the way that you speak, because words can be so hard.

If this happens, simply say bear with me, I have a neurological condition.  (1) it isn’t a lie and (2) if you say fibromyalgia people automatically ignore your issues, they just do; it is a shitty word.  I have tried this several times and it works like a charm.

Now, love who you are.  Replace words if you feel like it, with other similar ones.  Just become yourself.  Stop hiding behind FMS..  start to live..  get to know yourself again.

The new self..  The one that you are now.  So, you lost the ability to do some shit..  there are a million other things that you can do..  you push yourself.  If you fail.. that wasn’t your thing.  Simple as that.. Move on to the next thing.

Cry whenever you want.  Not every day, but during this process you are going to fail and you are going to be sad and you are maybe going to cry because it is frustrating as all hell..  But you can do it.

Don’t think about what hurts, unless it is knocking you to the floor. If you do go down, do it slowly and laugh at yourself.

Don’t wonder “is that the fibro or am I dying?” because YES it is the FMS and that isn’t your focus anymore..  your focus is you..  stepping out of the box you have yourself in.

You will still have things you cannot do.  My goal is not to cure you, that is impossible.  My goal is to help you understand you don’t need that box.

I have told my family that I am no longer going to be the pushover I was.  I was allowing my son to run roughshod over me because I didn’t want to fight and get upset.  Unfortunately for him, those days are done.  That is my most recent step up.

I have made some stuff.  Earrings..  Necklace.  I thought that was gone, The ability to make them, and even though it takes me 3 times as long as it used to and it hurts like hell..  I do it because I have pain anyway and it makes me happy.

Now, I shall have to speak of the cost of becoming yourself.  Most people develop their sense of self in relation to what others think.  It is science, it is how we form our schemas of ourselves and those are hard to take apart.

That said, that isn’t even the cost.  For me the cost was extended family turning away from me, refusing to speak to me.  I don’t miss them.  I never really did.  However, that can be too steep a price for some people.

I do wish that they would come see my son be the drum major for his whole band at high school.  Or come see the amazing mechanical work that my other son is able to do.  Or maybe come to the Sherlock play, where my kid is cast as Moriarty.  I am the one they don’t like, they should never take that out on my boys.

Yeah, the one in charge?  That is my kid.

Yeah, the one in charge? That is my kid.

Don’t let FMS make you scared to be yourself.  I have dread locks and I openly act in the marijuana reform movement.  I am broke most of the time, and I have this shit that makes it so I walk fine for a few minutes, then everything goes all to hell.

This reminds me of the “stop-watch” thing I do.  If I am going somewhere I have to time my meds of course.  I also have to TRY and figure how much time I have before my legs give out completely.

This is impossible.  I have tried for years.  There is no set time.  There is no watch and there is no way to know when everything is going to go all to shit.  What really sucks is when my legs and arms go at the same time, it makes it tough to get back up.

One last FMS thing that I thought about.. Words are as exhausting as running up a hill.  I think this might be on the hardest things for people to understand.  If you have an argument with me, it is as bad..  or worse… than if I was doing a marathon.

When I go to plays and music things, while I wait in my seat I listen to music on my phone, clearly ignoring everyone.  That way I am not done in before my kid even gets on stage.  Don’t ever be afraid to live your best life, no matter what your new version is, don’t be afraid to live it.

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FMS takes your life.  It steals it.  You are forced to forge a new one.  It will be one of the hardest things you have ever done.  You don’t need the haters to understand, you just work on you.  Live your life, love your life, it can still be a great one.