I Need You to Understand

I’ve been neglecting this poor blog for a couple of days. It teases me as I contemplate sleep or writing. Neither of which I’ve accomplished much of in days. I wrote a post on my Autoimmune Facebook Page a few months ago. I asked for some input from other spoonies. I wanted to know what their thoughts were as well. The NUMBER 1 thing that kept repeating was how alone each and everyone of us feel. (Note:the page is no longer up and running)

Take this list into consideration when talking to a spoonie.

I know I “don’t look sick” but I am. That’s why it’s called an invisible illness

Yes, I tend to be unreliable. And yes, I feel guilty about it. I often bail on plans or avoid making them because I’m in pain or I’ve forgotten. I’ll avoid your calls because I feel so lousy.

I know that I have changed. Pain and suffering does that to a person. I may not be as fun to hang out with, but I am still a human being with feelings

I am not lazy. It takes every ounce of energy I have to make sure my house is clean and there’s dinner on the table. I’d much rather curl up in bed for days. And sometimes I do.

I feel guilty. Maybe because I haven’t seen you in weeks. Maybe because I’m to embarrassed to text you. I have nothing new to say. I’m still not physically well. I know you get tired of hearing that things are worse or there’s no change So do I.

If you ask me how I am doing, I’ll either lie to you and tell you I’m great or you’ll get every new ache and pain in lengthy detail. Be prepared. When you tell me “your looking better” or “your walking better” it’s because I’m able to fake it just a bit better that day. Who knew I was gonna be a great actress.

Yes, I know you experience pain. No, it’s nothing like what I go through. Take the worst flu you’ve ever had and multiply it by ten. Now imagine that it never goes away. There are no meds that help and you still have to go to work or take care of your children.

I lose the use of my hands. They get numb, tingly and when my brain tells them to pick something up they malfunction and I drop it.

I also lose my vision.

Noise causes pain. The bass from music, the buzzing on a tv, YOUR VOICE. It can put me in physical pain.

Showers cause pain. It feels like thousands of bee stings on top of sun burn. No, I can’t relax in a hot bath. Hot water puts me into a flare. Then there’s the possibility I’d be stuck in the tub.

Aspartame did not cause my disease. Diet soda did not either. Changing my diet won’t help. Ive done the detox and elimination diets. Exercising wont help either. I have a hard time walking. Don’t expect me to run or lift weights. I’ve tried.

Lastly, all I want is your friendship. I don’t want to be judged or told I’m not trying hard enough. I don’t expect you to understand my issues, I expect you to love me anyway. I want you to accept me. That’s what I ask of you.

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Take for Granted

Lost in this cloudy haze/
Wondering if its just a phase/
Moments pass me by/
Leave me only asking why/

What’s the point of all this mess?/
Why am I in all this stress?/
Is there more to my life?/
I can hardly find the drive /

To push on through/
Like you all do/
Takes more from me/
Than you’ll ever see/

A simple task you take for granted/
A healthy life you were handed/
Nothing is the way it seems/
My inhibitions haunt my dreams/

That Sinking Feeling

You know that feeling you get in the pit of your stomach? You know, the one that instantly washes a wave of dread over you? You might sweat a little, hold back tears or look around to see if anyone else notices…it’s that feeling you got when your high school sweetheart was in the midst of trying to break up with you. The feeling right before a car crash or even when you hear, “we need to talk”. Have I made my point?

Well, I got that feeling today. It happened when I dropped my 4 year old daughter off at preschool. Waiting to go inside, another boy showed up. Normally, this is great, another kid for mine to talk to. The problem was what this sweet little 4 year old boy held in his hand….a puppet.

How, do you ask, did I manage to feel like I was going to vomit over a hand puppet Well, I’ll tell you.

It was puppet day at school, all the kids were supposed to bring their own hand puppets and I forgot. All I could picture was the look on my precious girls face when every one brought out their puppets and she was left without one. How that must feel.

I wanted to cry for her. I wanted to drive the 40 minute round trip drive to get her puppet. I wanted to ask the teacher to change puppet day to tomorrow. (Cause that’s logical, right?) Instead, I hugged her tight and told her that the teacher would have a spare one for her. She kissed me and skipped happily into class. Not phased at all.

Sometimes I forget that my lovely little princess is only 4. Not yet burdened with feeling “unpopular” or like she doesn’t measure up if she doesn’t have the coolest toys and gadgets you can buy. Let me get my therapist voice ready. I’m assuming I get this feeling from the things that happened to me growing up. The need to fit in still buried inside me waiting to unleash its ugly head. Waiting, to make sure my baby girl gets the best so that she never gets that feeling in her stomach.

Here’s the thing, if I can instill in her NOW that what matters most is her family and the love we have for her, then maybe I can stop what I so often witness in others. Stop the amount
of value we often put in material things. Stop the bullying and feelings of insecurity because we don’t have the best of the best. I want my daughter to know that she doesn’t need the iPhone 3000 just because everyone else does. That if times are hard, no matter what she has me.

It may take a while for this ugly, sinking feeling to get out of my system. But I vow to keep it out of my baby girls as much as I have control over.

I also vow to try and forgive myself. I do have fibromyalgia and I do have a ton of other medical issues. I can’t always be perfect. I will forget hand puppets, picture money and permission slips. It’s inevitable. I still love my girl and would do anything for her. Even if its as illogical as asking her teacher to switch a project date. 😉

In Light of Celebration

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It’s May 12th which means two things to me this year; Mothers Day and Fibromyalgia Awareness Day. Both of these have played a huge part in my life. One a little ok a lot longer than the other.

My mother and I have had a relationship that goes beyond words. Like any good, great rather, mom she has been there to lift me when when I’ve fallen. She has wiped away my tears, she’s encouraged me to try new things and given me the occasional “cowgirl up” speech.

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Things have changed drastically for both my mom and I in the last year. I won’t go into detail, mostly to respect her privacy but also to save myself (and maybe you) the tears. Our relationship has even changed, I believe for the better. My mom has been the one person I can depend on through life. Whether it be a breakup, losing a job, dropping out of college, another break up, becoming a mother myself, yet more breakups and now my health, she has yet to leave my side.

I pray that I’m half the mom she is. My daughter’s father and I had separated when she was about a year old. I never really did get to celebrate Mother’s Day. No flowers or cards, breakfast in bed or thank yous. Nonetheless I was grateful to have my lil princess just call me mommy.

With all of that being said, I’m brought to the fibromyalgia part of all this. I was diagnosed with FM a year ago. However, I believe I’ve had it since around age 14. (I’ll save that for another post). It makes life and motherhood extremely difficult.

There isn’t much literature on FM. There’s a monster list of symptoms and no cure. Doctors don’t know what causes it (though there are theories) and there’s no definitive tests. Some doctors and family members and friends don’t believe it even exists.

I’m here to tell you FIBROMYALGIA EXISTS. We need to raise awareness and find a cure. People, just like me, suffer every single day of their lives. It’s time to put an end to the judgmental looks, hurtful comments and physical pain.

We have voices that need to be heard and faces that belong to this invisible illness. It’s time to fix this!

LETS CELEBRATE LIFE TODAY

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Finding the New You

I’m choked up on my words before I even begin to write. I find I’m still emotional from my post earlier today. It had been 6 years since I had written something other than poetry or a song.

My post about dealing with chronic illness seemed to be received well. I’ve sat for hours contemplating what to write next. My hands aching to pick up a pen. My mind racing with ideas that never form a single complete thought.

Now, I’m a Gemini so I’m used to having scattered thoughts. But as my illness take over I’m finding more of them scattered farther out. I had a conversation with a dear friend of mine who said she thinks of her brain as a large room filled with files of everything she’s ever learned. (I believe similar to a Stephen King book). However, there’s no rhyme or reason to her filing system. I told her, I think a tornado hit mine.

Being scattered brained and inconsistent makes writing difficult. If you can’t follow your own train of thought, how can you expect your reader to? It’s like jumping tracks and leaving your passenger without a memo. They’ll be more lost than you. Ok so…where was I?

Oh yeah, completing a thought. Seems to me, I’m learning, I’ve always struggled with completing one thing….figuring out what to do with my life. Now, don’t get me wrong, I do complete projects and I CAN stick with some things.

I showed dogs (in 4-H and professionally) for 10 years and I was dedicated to graduating High School with honors (which I did). But then I turned 18, which meant graduating high school as well as the end of my showing days. So what’s every honors graduates next move? College right? wrong

I changed my major three times. I started out as an English major but I got bored hated my professor. So I dropped out, moved out of state and got accepted to Le Cordon Blu in Portland. I hated it too actually, I got homesick and dropped out, moved home and changed my major to Spanish. You seeI have a passion for food and language.

So here I am, 6 years later. I constantly lose my vision, can barely walk on my own and lose the use of my hands. I started my own business two years ago take a look . But I can no longer do this with ease or certainty that I can complete a project. I mentioned before, about finding the new you. So now, I am FINDING THE NEW ME. I’m writing again. Which is where I was in 2006. So is this the new old me. It has taken me a lot of time and it will probably take me more.

Don’t be afraid to try new things. Don’t be left thinking what if?. Find the new you. It’s OK to drop what’s not working to pick up something that might.

FIND OUT WHO YOU ARE and what your meant to do. Im signing off for now.

Xx

Broken

Been beat down and broken inside/
Filled with emotions I just can’t hide/
Tears pour from tortured eyes/
Hiding behind a stream of lies/

Trying so hard to break me down/
Have me so low I won’t be found/
Lost in a world unknown/
Knowing only that I am alone/

Words spew from broken lips/
Reading from unwanted scripts/
Hatred seen amongst their eyes/
Left asking a train of whys/

True colors being shown/
If only I had always known/
Bringing myself back from dead/
Keeping their lies out of my head/

Finding my grip on reality/
Finding ways to set me free/
A love so strong and true/
Known to just a few/

If you dare to see/
The person I aim to be/
Take a look into my eyes/
Staring back through all those lies/

By Lena May

Hidden behind Fame

I ran across a Facebook post by Cindy over at FibroColors mentioning that Morgan Freeman had been living with Fibromyalgia. Now I’m a huge fan of Mr. Freeman and almost every movie I’ve ever seen him in. So I have to google it. The first link that pops up is an awe inspiring article by Tom Chiarella. “This Earth That Holds Me Fast Will Find Me Breath” The Morgan Freeman Story absolutely gave me chills. It even brought a tear to my eye.

If I’d have been alone, no doubt I’d have cried hard upon reading the descriptive words about how Freeman’s life had been changed. How he could no longer do the things that had once brought him so much joy. What hit me even harder, was how he simply took the same pleasure in just walking his land in Mississippi.

Here is a man that rode horses every single day, used to sail himself out to the Caribbean for two to three weeks at a time and took up piloting jets at age 65. And he is ok has accepted just living in his body and doing what he’s able.

I have met quite a few people in the last month via twitter and Facebook that are becoming family to me. Spoonies, if you will. (If you haven’t read the spoon theory please take a minute and read The Spoon Theory written by Christine Miserandino). The term spoonie has become a nationwide term for those of us living with a chronic illness. I see their stories, share their pain and live with them.

So often we feel helpless and alone. We can no longer take pleasure in doing the things we once loved. We are all in different stages of our lives. A grieving or mourning process takes place. We lose family and friends who are judgmental because they simply have no way of understanding what we go through.

I don’t blame them, how could you possibly understand? I still do not. I myself have trouble accepting that I can no longer ride my horse, run around chasing my 4 year old or even fold laundry without putting myself into a flare of pain that could last days or even weeks. I can no longer pursue my own career as a cake decorator. (Visit Lena’s CCC to see what I used to do [shameless plug]). My hands and eyes just don’t work so well anymore.

So what I offer you is this; mourn, grieve, be angry about the loss of your old self. Its OK but embrace the new. Find out what you can take pleasure in doing. Whether its reading to your kids, walking on a trail, stargazing, singing, or talking to others who KNOW and understand. Do something for yourself.

If you happen to be reading this and know a spoonie, try to be open. Listen to them talk. Even if you can not relate, just be thoughtful and let them know you still care. We understand you need to mourn the loss of the person you once knew. Yes, we have changed. We are trying to learn to love ourselves but we STILL love you.

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