D is for Disabled

This week I’m going to step back from my role as the voice of this blog. My goal as a writer has always been to inform, inspire, and to give others a chance to tell their stories. So this week, blogger and Fibro warrior Tammie Birdwell will be your voice. I met Tammie through my husband and have been corresponding with her for a few weeks. Even though she has Fibromyalgia and not RA, I asked her to write a post for me because we share the common bond of the autoimmune disease. While I am fortunate enough to not be totally disabled, I understand all too well the struggle she describes below. So now, I’m going to pass the mic to her. I hope you enjoy her entry as much as I did.

 

I have been remiss in my writing lately.  I attend school and it has been really tough lately.  I keep telling myself it’s because the classes are more difficult (which is true) but I also know that my thinking and logic are pretty broken.  For the new people reading this; know that I write from my Fibromyalgia brain.  The sentences might run on, or not.  I may use the wrong word or seem really random.  I write for folks with Fibro so I write FOR them by not trying to have perfect structure or grammar. I type what is in my brain and that seems to work.  I want to reach a large audience and I know how difficult it is for me to read long paragraphs. I very much want to get the the point, eventually.

Today I am talking about flare ups and disability.  <— there, a thesis.  Yes, I also try for the occasional giggle.

I am writing this today for two audiences.  I am teaming up with Alyssa Pierce, a new friend that has RA.  Fibro warriors have a lot in common with people that have RA.  Hell, we have a lot in common with anyone who is in pain all the time.  No one else can understand and for that I am glad, I wouldn’t wish this on anyone.

Now, I also like to keep my paragraphs short and to the point, this is a Fibro thing.  So once again, structure suffers a little bit, but I want everyone who reads this to find it easy and informative read.  I wanted to start this post with some information about Fibromyalgia flares.  I know that warriors with RA also flare up.  What I don’t know is if it is like our flare ups, or if it is different.

See, last week I was having a huge flare.  I was miserable and I couldn’t think in a sentence, let alone speak in sentences.  That one is what I call my thinking flare, it is usually accompanied by some burning on my skin and a feeling like my hair is growing.

I have another flare up and this is the one I call my physical flare.  This is what I am suffering right now, since yesterday.  It took me several tries to get out of bed.  My hands feel like they are going to blow up at any second.  My head feels the same, my vision is blurry, and I am working up the energy to take a badly needed shower because, yes, I put them off because they make me so tired.

It sucks so bad to get out of bed when it hurts to move.  However, a bit of advice?  I learned that staying in bed unless I am sleeping or getting lucky is not a good idea, no matter how badly you want to stay. It is called sleep hygiene and you have to force yourself to stay out of bed.  It sounds like torture but it is not.  It takes a while, and some nights I don’t even try, but it does really work.  I break the rules at times and take a nap but only if I am falling asleep where I stand, which brings me to the third type of flare.

This flare up is so intense in involves every muscle, nerve ending, ache, pain, and a feeling like your skin is on fire.  Those flares are so intense the only thing to do is lay down, you are not capable of anything else.  Which brings me to my next topic…  disability.

I belong to a lot of groups on Facebook and every single day I see people getting really excited because they have been given disability [benefits].  I am happy for them, but I thought that I could do this.  I thought that I could accomplish something.  I wasn’t wrong, but I am disabled.

I was a heroin addict 15 years ago for about three months.  Luckily I stayed off opiates easily after that, even with Fibro.  However, I had to come out to my mom and everyone else I loved.  I had to say, “I am a heroin addict”.  I thought those would be the worst thing I would ever have to admit about myself out loud.  I was so very wrong.

Having to say yes, I am disabled, I need help.  I need some income. That was the hardest thing I have ever admitted. Saying  “I am disabled” still makes my stomach hurt.  My family has suffered greatly because I am no longer able to work.  It took 4 years to get a diagnosis.  I know that I will get disability this time.  My heart is broken.  I was a dancer, a ballerina.  I was a cheerleader in high school.  Now I can barely get into the bleachers to watch my son be the drum major.

It is interesting; on my paperwork for disability they asked me where I hurt.  I laughed and laughed.  Everywhere, I answered.  Then it asked me several more times, in different ways, and every single answer was everywhere and always.  So, I even got to laugh a bit while I was filling it out.  Knowing though, owning, the title of disabled is a crushing blow.  I know that I am.  I knew that I was a drug addict.  This does not make it easier to say.

I used to work at the PA Renaissance faire putting women into corsets.  I loved it.  I loved making women beautiful.  I also had to quit there.  I want to go and see all my friends that still work there and I am wondering if one can rent a HoverRound.  I couldn’t even make it to the front gate without needing to rest.

These things could all bring me down.  These things could all make me want to quit, to give up. However, these things only make me want to work harder.  No one, and I mean NO ONE and NOTHING, can change the way that I live, but I am the only one in charge of my brain.

I choose happiness over misery.  I choose to laugh when I know I need to.  I choose life, no matter that I have to crawl sometimes.  I choose to live my best life.  I also choose to be happy.  You have the power, in your brain, to control your own destiny.  It isn’t gone, nothing important is gone.  It’s simply different and we just have to learn to love ourselves when our settings are on “different”.

It is so damn hard to try and explain what it is like when your brain and mouth refuse to work together.  I have worked for years to make my sons and my husband understand.  They finally do.  Want to know how I made that miracle happen?  I stopped trying to explain myself.

I didn’t hide anything (except the pain, we all do that) I just existed.  I stopped trying to make them understand and I started to live my best life in a whole new way.  I interacted with them and if I struggled to find words, I didn’t explain, I just make up words.  They will eventually learn your language. This new method, the one where we exist and let them watch, works.  It takes a lot of patience and a long time, but you will get there.  If I can do it anyone can.

For my words, when I lose them, conversation goes something like this :”Are we going to the field thingy to watch Rudolpho Hans play running ball?”  Which translates to, “Are we going to the stadium to watch the Saints play football?”  I know that first one was mostly inane gibberish.  However, I got A sentence out.  They will start to learn your language, I promise.

This just happened…  an example of my speech issues: in a text to my husband, “Except smokes.  The shenanigans cigs.  No… Monrovia..  dammit.. Morgan…  Fuck it.  Those cheap ones” That was my text to my husband.

I know that I should quit…  that isn’t why I shared this.  I shared this because it is real life..  My life…  Maybe yours too.  The cigs are Mavericks, I finally thought of it.  I really have to laugh..  this is funny.  I should write children’s books, I am excellent at coming up with fun, meaningless, quirky words.  They are easier than regular language most people use to communicate.

Warriors and new friends with RA, it has been a pleasure to write some words for you all, maybe I can help a couple people.  Remember, always, LIVE, LOVE, and FIGHT.  We got this.

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