Saturday, January 25, 2014

This is me....

I am just another face.... Just another person living with chronic pain. Many people don't get it. Many people think it's bull shit. I'm here to tell you, it's real. This is my life. This is me.

What did I do today to be in so much pain tonight? Normal housework. I did the dishes, cleaned the bathroom and did 3 loads of laundry. Doesn't seem like much does it? Tell that to my body. This is my face tonight:

I am fighting back tears even as I sit here and type.

It hurts to sit, to stand, to walk, to cry....

There are people who think that fibromyalgia and chronic pain is a joke. That it's fake. That we are using it as an excuse to be lazy. I know this. I have been told it many times. 

Do I look like I am faking it? Do you think I enjoy knowing that simple tasks such as housework, or a game of catch with my boy, will leave me chair ridden for at least a day or two??? Do you think this is the life I chose????

It's the life I was given. I won't back down, and I won't give up. I'll do what I do every other day. I will suck it up. I will wipe my tears, and I will keep on keeping on.

Not for me really, but for my son. Because he deserves more. Because he doesn't understand why mommy cries so much.

Friday, January 10, 2014

I have to let go....

  This is really something that I, as a human first, and mother second, struggle with. I need control. I need to be in charge. I need to know what is happening and when, and DO NOT make plans with out telling me. Last minute things bother me.

  But it's more than that. I have an image in my head of how things are supposed to be,  how they are supposed to look, and how they are supposed to go. You know, in the grand scheme of things. Over the years, I was disappointed when the grand scheme didn't meet my expectations. It's cool, I am learning to let go.... mostly....

  Except where "art" is concerned. I am ANAL about how any art is supposed to look. Therefore teaching Liam art is so hard for me. He wants it his way, and I want it mine. I know, that's not right, but I can't help it. It's the way I am. I am learning to back off, I really am....

  Case in point: His current obsession is The Walking Dead. ALL THINGS WALKING DEAD!!! Oh and coloring. So, he is having me go online and locate/print coloring pages of the Walking Dead. We have been coloring, A LOT!

  He has been choosing the more open pics to color for himself, and leaves the more detailed ones for momma. I LOVE it. I have ALWAYS loved to color. I would rush my drawings in art, just so I could get to the coloring part. I digress.... Last night, he had a picture of Michonne. It was SUPER detailed and I wanted to color it, as did he.

  He started to color it, HIS way. When I looked up and saw that he had colored Michonne gray instead of a darker brown,  (she is a gorgeous African American woman) I got upset. "You made her look ashy! Her skin isn't gray, it's a nice dark brown Liam!" I said. I realized as soon as it came out that 1) it sounded mean and snotty, and 2) I broke his heart! 

  My heart sank. I felt horrible! I hurt my baby's feelings, and even worse, discouraged his interpretation of art. I stopped what I was doing, and told him how sorry I was. I explained that I was wrong. That everyone has their own way of viewing things,  and it was wrong of me to push my views and interpretations onto him. I then worked on encouraging him to finish the picture.

  He finished coloring Michonne HIS way.  It really is lovely. I will NEVER get rid of this picture. It will be my constant reminder that I can't control everything...

  I have to let him view the world through his own eyes. I have to let go....

Sunday, January 5, 2014

Rock and a hard place....

  Trigger warning: whiny mother who feels defeated, deflated, and discouraged.

Do you ever feel like no matter what you do, it's going to back fire in your face? Like you're caught between a rock and a hard place??? 

  As a special needs parent it's our job to prepare our kiddos for the world (to prepare the world for our kiddos) and to combat any issues that may arise in this process. Many of our autie kiddos are VERY dependent on a schedule, on their routine, and anything less really creates an issue for them. Which inadvertently creates one for us.

  So we all know that when schedules/routines need to be changed, it's our job to prep our kids. (yes, sometimes we can't, that is life, and we have become accustomed to dealing with that fall out.) But the times we do know in advance, we prepare.

  Lately, preparing Liam for any routine changes seems to cause MORE issues for him. Thus creating more for me. For some reason, when I tell him what is changing, he spends almost every waking moment ruminating on these changes. For instance, tomorrow I have an appointment in the am. When we get home his MT will come for 2 hours. Then the neighbor kids are getting off the bus here. After that an OT will be here to evaluate him for services from his cyber school.

  While this may not seem like much to us, to him this is huge. I told him this morning what was going to take place tomorrow. I knew a busy day, that is out of our "norm," warranted some preparations. Instead, all it has done is given me a head ache and him more things to worry about.

  His mind is thinking of every damn thing that could go wrong. Even things that won't go wrong. It's creating scenarios about tomorrow that will never happen, but in his mind, they will. I feel awful saying it's annoying me. I know how bad that sounds. I also know how badly it's affecting him. But I did what I have always done, which is prepare him for the changes in the day ahead. I am thinking that I made the wrong decision....

  So I am left with, next time, do I tell him and watch him ruminate all day? Or do I NOT tell him, and then deal with the fall out? See what I mean? Rock and a hard place.... Is there even a right answer???

I am by no means a perfect mom. I know this. I just want to do what's best for my son. Sometimes I'm not just sure what that is.....  

Thursday, January 2, 2014

I wish you understood me....

I wish you understood me. 

When you yell at me because I can't make phone calls, my heart shrivels a little.

When you nag me about getting my license back, my pride ebbs away.

When you get angry because I don't want people over, it embarrasses me.

When you tell me I'm lazy because I am too tired to get out of my chair, it angers me.

I wish you could understand why I am the way I am. I wish you "got it."

Let me help you try.    

 I don't like to leave the house because I feel safe here.

I don't like to go to other people's homes because I feel out of place, like I don't belong.

 I don't like to go out in public alone. It makes me very nervous. I feel a million eyes on me, and it makes my skin crawl.

 Answering the phone, and not knowing who is on the other end, makes my heart race and my palms sweat, and a sense of panic rolls over me. I am often at a loss as when to speak, and I fear I will cut someone off and make them angry. I sometimes take over the conversation and then I feel they think I am selfish and rude.

 Making phone calls is almost as bad. My brain gets wonky and I forget what I need to say. If I write it down before hand, I can often psyche myself up and make the call, but even that takes a toll on my nerves.

My mouth lacks a filter and sometimes I spew forth things that I shouldn't say. I can't help it. I don't mean it. I am honest to the point of hurting others and that makes me feel bad. I am often afraid to speak. Sometimes when I do, and I hear it coming out of my mouth, I shrink a little. I know that I just offended someone and I know I can't take that back.

 I don't want my license. I know when I get it back and you have a bad day, you will expect me to run errands on my own, and I know my nerves can't handle that.

Sometimes being social is like work. I know you don't get that because you are a social butterfly. I am a "hide in the corner and hope no one notices me" person. I would love to be invisible.

I don't want to move out of my comfort zone. I like it here. My bubble is safe.

My friends live in my computer because I don't have to face them. I can hide behind my screen, but be my real self, and I don't feel judged. If I type something wrong, I can edit it, or even delete it, and I feel safer that way. I don't have to look them in the face, and I don't have to feel their eyes on me.

I know this may sound ludicrous, but this is my struggle. Everyday. I wish you got it. I wish you knew. 

I wish my shoes fit you, so that for one day, you could experience the world, through my eyes.