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.

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 following

or this one

Or this one

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.

The Most Embarrassing Moment of my Life….

Since the past few days have been miserable for a lot of us, who are suffering right now because it got cold in one day.  WHAM..  it’s winter…  I know I can barely move and needed multiple rests while shopping last night.  I should have used a mobility scooter..

That said, I think that it is an excellent idea to tell you all a funny story…  Also yes, it is true

Years ago…  before I had figured out what was happening to me.  Before I figured out that I could not be trusted in certain social situations..  My husband and I attended one of his company Christmas Parties.  It is always a really strange energy in a room when you stuff a bunch of construction guys into suits and make them behave..  this is no excuse..  but just a point I wanted to make..

Maybe a warning for some of you warriors out there.

My husband of nearly 20 years and I were talking about motor-boating on the way to the party.  Not like literal motor-boating, but the kind where you blow a zerbert in someone’s cleavage.  It is one of my favorite things and my husband and I both think it’s hilarious when our friends get a little off their rockers and give me a nice motor-boating.

Maybe the idea seems strange to most people, and their partners might not find it funny if their friends were blowing fart noises into their loved one’s cleavage, but we love it.

We have our own way we do things and we have absolutely no desire to be “what we are supposed to be” but what we actually are.  Happily married with two successful kids.    We did that..  Whatever it is that we got, it works..  screw being like everyone else.

At any rate, we were at the party and at that time I was still trying the: “get a couple of drinks, that will make this easier, then you can have a decent conversation” mode.  So I am two to three glasses of wine in and we are sitting at the table, jovial and happy..  I was doing so well.

I was remembering who had babies, who was divorced, etc; so I hadn’t had a single FMS moment..  and we were already on dessert..  Holy shit, I literally thought at the time that I had this thing licked.  All I had to do was have a couple of drinks and I could “socialize” properly.

Then it happened, the thing that I didn’t even want to talk about for years because I would still hang my head in shame.

They were talking about one of their bosses.  I shall call him Bill for the sake of the story.

That is when I dropped the bomb…

Of course it was one of those rare moments when the whole table was quiet and I turned to my husband and I said, “see, this is what I meant when we were talking earlier, I would love to have Bill motor-boat me……”

Total silence at the table..  I was frozen, which almost never happens.. I had no idea what to say or do..  I was scanning through my brain for ways that I could get out of having just said that..  I could think of none.

I swear the uncomfortable silence lasted a full minute, a couple of women at the table literally dropped their mouths open.  The guys all looked SO confused, and my husband was hanging his head.

We left almost immediately, and that was the last company held event that we have ever gone to.

I can finally laugh at myself..  But holy shit..  easily one of the most embarrassing moments of my entire life and I do not embarrass easily.

Is that a giant spider on your face? YUP that happened.

Don’t fret, I was not bitten, the spider lived and I got some funny video of me losing my mind.  However, even though I was SO terrified I still did it.  Although I am now still working on getting over what it felt like on my face.  ALL OVER my face, literally…  both cheeks and chin…  until I figured out what it was when I knocked it off my chin.

Am I still totally freaked out?  YES.  Am I back to being scared of spiders?  Nope.  I am in a bit of shock and it sent me into a flare, but the point is.. I fucking did it.  I dealt with it.  I got a plate and a glass and I put it in the ivy out front.

Here is the video, RIGHT after it fell off and I realized that I had it on my face..  watch carefully, there is a spider… I don’t want to set anyone off.

Feel free to laugh, I think it is hilarious.

The main point here is that I did it.  If I can do that..  anyone can.  I feel like a fucking spider ninja.  I am really proud of myself.  Did I scream like a zombie was about to eat my face?  Yes..  Yes I did.  Did I pee a little?..  Yes..  Yes I did…  Did I get that sucker in a plate/glass trap?  Fuck yes I did.  I DID it.

No matter if you have fibro or not, push.  Push yourself every day to be better than you were yesterday.  Force growth and make yourself better.  Take every opportunity to expand your mind and see the world in a different way.  Yeah, some would say that a huge spider on my face for a solid minute was nothing… but to me it is like I became the President of the Brave.. or something.

No matter what it is that you have chosen…  push it.  Don’t step.  Don’t let a flare that puts you on the ground stop you, on the worst days breathe, you will make it.  I have.  I just did..  Push it..  baby steps..  patience.

Feeling Groovy, Then I was Quickly Reminded I am NOT 18 and a Ballerina Anymore.

I have been going through old stuff that I have written.  I thought at first that I would be able to make one of those numbered lists, like Oprah used to have. “10 steps to live your best life even though you want to crawl out of your skin constantly “ Like.. Step 1. Don’t think about your pain today.  If at all possible, dismiss it from your mind.  Okay, that is actually my number one.

The thing is, though, that a step program isn’t going to work.  This is fibromyalgia.  There are no such things as a numbered list because you know damn well you lost the list.

Now, not to worry; I have been thinking of another plan.  I am simply going to tell you my story.  The parts, at least, that are relevant to my journey since fibro stole my life, forcing me to make another one.

When I say that step one is don’t think about your pain, there is a addition to this step you aren’t allowed to say “fibro” or FMS or “fibromyalgia” today and tomorrow and forever and stop listening to your body.  I know that sounds insane, but block your reaction when you can.

It isn’t realistic to keep this up constantly, but you can have more good days.  I have a lot of good days.  I just busted my ass, I fell into a creek from a log..  I am hurting, but I watch the aftermath video and it makes me laugh, shit I am laughing in the video when I was trying to get out of the creek.

Do not think for one minute that I am not still in pain every day..  I am.

We lived in a different house when I first got worse and had to quit my job.  Our bedroom was in the basement.  I spent nearly 3 years down there.  I didn’t interact with my kids because they would overwhelm me immediately and I didn’t know how to handle that energy, so I would run.  Since we have moved I have forced myself to stay in the chaos (also, I have nowhere to hide).  I have teenagers, it is a much different than a toddler.  The similarity is that cannabis will help you keep from vibrating in most cases when your child’s energy makes you feel like you want to roll up like a stunned armadillo.

I have had to work out how I felt and in turn I finally got their cooperation, for the most part.  This took me years..  This is not an easy process.  Baby steps.  You are going to learn an incredible amount of patience with yourself, but you will also learn a lot about yourself.  These are the things that I have done to get my life back, and I am getting so much more than I thought in return.  More on that later.

The point is, you set goals for yourself.  One of mine is to slow down and vibrate at the level that is healthy for me.  Another is to stop cussing SO much.  Another is to do “fibro scheduling”, because it takes me on average about twice or three times as long as it would a healthy person, take more showers, work on my pile of shit, Just to name a few…  Make more crafts, but that requires time, and I have to forgive myself, at the end of the day, if I didn’t get it all done.  The point is, there is no way that I can do everything I want and I have to know when to pull back.  Luckily I have a sister love who calls me out when I need to slow down.

I did go outside on a walk in the woods today.  I had a lovely time.  I knew that I needed to connect with the earth and ground myself.  I did that.  I did a small ritual to help cleanse me of all that “hurry, run, it has to be now” energy that I tend to get.  The difference is that I steer that energy at a purpose now.  I simply have to keep looking for that line between going slow enough and getting everything done.

It is a constant job, running my body and trying to make a new life for myself.  I get knocked down, I have days where I don’t get out of bed.  I have moments when my kids make me want to pull my hair out..  That still happens, but I also have a tool belt full of metaphorical battle implements in which to handle myself properly, trying to keep my voice down because the ringing in my ears makes me talk really loud.

So yesterday I went for a walk in the woods, back a trail that The Best Husband in the Whole World is making.  It follows our creek…  We are allowed to play there, just no fires or motor vehicles, which is fine.

Here are some photos I took along the way..  because pretty Mother Earth

I walked slowly, reconnecting with the important stuff before coming back in here to work on homework, blog, family…  I slowed down.  I saw what is going to be an amazing picture..  On the other side of this log that fell across the creek.  I was reminded of times in dance class and gymnastics when I would be graceful like a swan and balanced like….  things that balance… So I got the idea that I would simply walk across the log..  Easy Peasy right?  Well, please watch my video…  because this is the aftermath of my “Great Log Adventure”

Now, this is the perfect metaphor.  You get knocked down, you laugh your ass off at yourself, and you pick yourself right back up and keep going.  Well, it’s a version of going, of course I am sore today, totally worth it.  Oh, and I made my husband film me.  I figure if I can make someone laugh, even at me…  it was worth every pokey thing in that devils bush that I landed in.  I am not sure they are called devil’s bush for real..  but that is what I shall call them forever and ever.