Wednesday, February 1, 2012

It's Been Awhile. I Play Like It Don't Exist It Doesn't Right?

It's been awhile since I have wrote a blog. I have been in a rough spot. Not much to say. Oh well I have had allot to say. Just not allot to write. Or the know how to write it on paper, or screen. I guess the point of the blog is to blog the suck, and reality of my life right? All the ups, and downs. I have to ask myself. Am I really ready for that? To put myself out there as such? To have all my business out there? Doing so would let people into my brain, my emotions, and they would know that I'm not always a tough girl. I don't know if I like that or not? When I'm in my non tough girl mode I prefer to hide. To not let others see. I don't like weakness. I don't want other to know my weaknesses. Yet weakness makes us human. Normal.

This illness really takes a toll on me sometimes. It takes a toll on my family sometimes. If people only knew what it was like. Yet you will never know you are not me. I would never ask to take it back or change my life. Nope. Just makes my life so very complicated. However I don't like what this illness does to my family. They shouldn't have to worry about me. My husband should not have to spend his days at work worrying if I'm okay. I was always the strong one. The one that got shit done. I took names, and asked questions later. Now I do good to remember my kids names. 

I don't like the fact in my extended family my illnesses is just something we don't talk about. Kinda like when someone gets the clap, or  crabs. You know they got it, and it sucks. You want  to know the how, the when, and they where? Yet it's like a train wreck. You want to know. To see, but you are to grossed out to look. To ask. That is how I feel most of the time. I feel I have to be fake. I have to play "well" in front of most of them. I'm not allowed to be unwell. Maybe its because I was always so hyper, and full of energy before? I don't know? So it has caused me (and my family) to be very distant from allot of people. They just don't get it. They don't get what I go through. They don't try. Nor do they see what my husband go through. Or my kids. I'm not unique in my story. I can tell you many the same as mine. It happens often in chronic illness. Especially in Invisible Illness. You see because I'm not walking around tinged green, with oxygen, in a wheel chair all the time. I'm not sick right? Or because I'm not 85. I can't be fragile. I'm young. I'm a Mama. I have a husband, a house, and kids. I have blue hair, and wear makeup (sometimes). How could I be sick?

Well look at it like this. Concealer hides nasty blue bags from only sleeping 4 hours. Or allergies. Or hives. Foundation can falsely create some color that most time I don't have anymore. Blue hair well that is just fun. Plus it does distract you from seeing my pale face, my non plucked eyebrows, and how sick I do look. If you really look. Most days. Sure I have good days. Great days, and shit days. Stretch pants are a must because most days I retain about 5 extra pounds of water. Most days I don't wear tie shoes. Two reasons. People with POTS don't bend over, and and my feet are always so swollen most days I can't get them on. So Crocs it is. I also gave my son my tennis shoes. My good pair because his came apart. I can't afford to replace them. No problem can't wear them tie ones most times anyways. 

I have a wheelchair in my room. It took me so much to ask my doctor for this. Why? It meant defeat. Yet when I get a Hemiplegic Migraine, and can't walk a few days I have to have it. Another thing most didn't know about me. Yet I still cook. I still get my stuff done. Just at a whole another level. I have modified so many things because of my fucked up body. Lighter knives. Plastic dishes. Plastic cups. A food processor. A Kitchen Aid mixer. A very light wooden rolling pin. Tiny little forks. Very light hair dryer, and tiny flat iron. I wear my hair short. Down to the clothes I wear. No buttons. No shoes laces hardly ever. I use a grabber to clean. Like the thing you see city workers picking up trash on the freeway. Yep I have one. I pickup laundry. Trash, toys, and anything else. POTS people don't bend down. 

So as you cook, clean, sleep, bathe, dress, eat, or whatever, take a minute to think. What does someone like me have to go through? It's never simple? Yet we troop on. All we ask for is to be acknowledged. That what we do is hard. That we are strong. That we kick ass. That you realize everyday is a fight. Non sick people take so much for granted. So please just TRY to understand what it's like to be me. Or what it's like to live with me.

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