That pretty much describes my life right now. It's a random mess. And I hate it. I hate what this disease has taken from me. Mostly, my independence. I am SO. SICK. AND. TIRED. of having to call other people ALL. THE. TIME. for help. I don't like asking for help. I do, mostly for Jacob's sake, but I hate it. So much is out of my control I want to punch something.
JUST. FOR. ONCE. could something go smoothly for like, oh, more than 15 minutes? Yes, I'm venting. Today, I don't care. The past few weeks have sucked. Just sucked. I'm tired of everything being hard. I tired of fighting my illness for control of my body. I'm sick to death of not being able to do things with my family. Yes, I'm having a tantrum. NO, I don't give a crap. There are days when I just need to let some of this crap out or I'll explode. And I'd rather do it here than at my son.
I want to be able to go where I want when I want. I want to just be able to get in the car with my son and go somewhere. Anywhere. To a friend's house. To the store. Just for a drive. But 95% of the time I'm too exhausted to drive after I get everything in the car.
Inside I am the SAME. PERSON. I'VE. ALWAYS. BEEN. I think some people don't get that. My mind is the same. My heart is the same. My desires and dreams and hopes are the same. Only now, my body is holding all of those things captive.
You know, people complain about the STUPIDEST things. I overheard someone in the grocery store complaining because they changed the color of the packaging on their store brand products.
I remember when Jacob was in the hospital, full of tubes and IV's and on the vent, the church we attended at the time was completely up at arms, and some people actually left over a softball game.
I overheard someone bitching about the price of cigarettes. I have a $#*&!%# hole in my neck and struggle to breathe, and you're not only poisoning yourself but also complaining about the cost?
Are you KIDDING me???
I'm just fed up. I'm not pointing any fingers at anyone who reads my blog, so I hope no one takes offense. But if it makes anyone stop and think, so be it. There really are people out there who have more to worry about than what their hair looks like that day, or what shoes to wear.
I hate MG.
I want to be healthy.
I hate having a trach.
I want to gulp huge breaths of air, and talk without having to cover a hole in my neck.
I hate being "disabled."
I want to be able to work, and CHOOSE whether I want to or not.
I hate being dependent on other people.
I want to be able to take care of myself, my home ad my family without the whole flippin' wold having to help.
I hate having to say no so much more than I can say yes.
I'm. just. so. sick. of. it.