Thursday, June 6, 2013

My mind says I'm in my 20's. My body says yeah, you wish!

I got the idea for this blog post about 3 or 4 days ago talking to my friend at most likely 1-2 in the morning (I know it was late, just don't remember when). This friend and I talk almost every night in the wee hours of the morning because I can't sleep because I have my disease, and she can't sleep because she has an 11 year old with my disease that she has to take care of. Well, a couple of days ago we were talking about people and things. I wanna say not in a mean way, but seriously it was, sort of.

Well, here is how it went a little bit. We were talking about how certain people with chronic illnesses (we weren't naming names, just personality types) are the type of people that can't forget they are sick. They post about it every 5 seconds, they complain about everything, the post pictures of their piles of pills, their blood pressure cuffs, etc., they are so draining, they are so annoying. Then there are the people that don't care either way and are so lackadaisical and they almost act like they are not even sick at all, like they have no pride in who they are. Then there are the people who post all the time about their illness, but it is for advocacy sake, and they are always striving to beat POTS/Fibro/whatever just one more day. We have drive, we have passion, we have tenacity (DISCLAIMER: NONE OF THESE PERSONALITIES ARE RIGHT OR WRONG, WE ARE ALL IMPORTANT!!)...well, we decided this was me...and then the conversation continued this way:

Me: "It (this personality type) gets me in trouble a lot too. People think because I do so much or try to accomplish so much that I'm not as sick as I am and they don't realize how incredibly tired this drive makes me."

Friend: "Yep, I can see that. Same with my daughter. I really got to put the brakes on her sometimes."

Me: "Example: those valences I just made...I made 3 for the small windows, people will see that on facebook and be like damn, she just made 3 valences she must be fine...they don't know I threw up from the pain afterwards."

Friend: "I know, they totally don't have a clue, she tries to be normal with friends and they have no idea it's killing her."

Me: "It's like they (normals) think we have to stop living because we are dying or chronically ill. Wake up, we're all dying, from the moment we're born, it doesn't stop the normals from living."

So why is it that we (chronically ill people) are expected to sit at home all day and not move at all and basically act like we are dead already and if we deviate from the plan at all, if we go out and have some fun, we aren't sick anymore. I didn't realize when I signed on to this set of illnesses at 24 that I was sentencing myself to a life of staying at home and watching Price is Right for the rest of my life.

I hate, hate, hate with a passion the comment, oh you did ______ you must be all better now, right?

The people that say that to me don't realize that the one thing I did, the one appearance I made, took all of my energy for that day. People don't realize that the doctor's visits, treatments, infusions, meds, etc. are my full time job.

People say, you're so lucky you get to stay at home all day. I can't remember a day when I "spent at home all day" Yesterday, a day where I had planned to spend at home all day, I had to go fight with the Medicaid office because they discontinued my health insurance since I didn't "send in my bank records" well, I did, just not the way they wanted them. For me to do this task I had to get up, get dressed, go to the car, get in the car, drive to the medicaid office, get out, talk to the people, get in the car, drive to the bank, get in the car, drive back to the medicaid office, get out of the car, go back in talk to them again, get back in the car, and drive home. By the time I got home...from my around 1.5 hour task...I was in so much pain and in so much emotional trauma that all I could do is curl up in a ball and cry, and try to sleep. This "one" simple task to a normal person took me upwards of 15-20 spoons...and I already had about negative 10 from the day before. But I needed health insurance, so I did it anyway. And then I for real had someone say to me in a private message, for real, it's so good you felt good enough to leave your house today, I was livid! If it were up to feelings I would never leave my bed again, but life isn't about feelings. Life is about putting on your big girl panties and moving on.

Anyways, I don't even remember what my point was when I started writing this blog post. Besides the fact that just because I can't do something, doesn't mean that I don't want to. I want to, so bad. I am always thinking about what I'm gonna do, but then realize it's not possible anymore. Last week, I realized I couldn't read the music fast enough to play it at the right tempo on the keyboard. This week I've had it in my head that I was gonna work on my thesis every day this week and then my brain never cooperates. Tomorrow I'm going for my 4 hour saline infusion. Monday, I'm asking my neurologist for a wheelchair so I can go to the grocery store. Seriously. I'm 27 and I am going to beg for a wheelchair so that I can go to the grocery store. I bet you dread going to the grocery store, don't you? I cannot stress to you guys enough how annoying it is to have the mentality of "go, go, go all the time" and wanting to be a normal 20 something year old (or younger) and being in reality the body of a seemingly geriatric (seriously the people in the nursing homes get around better than me). I really just wanna be able to do normal things, even if that means I do it differently than normal people.

I'm just gonna leave you with this one thought. Never, ever, ever wish your health away. One of my professors for adaptive PE (before I was sick) always told us we should never use the term able bodied person, we should use the term temporarily able bodied because we never know when we are going to not be able bodied again. Boy, ain't that the truth. At that point, I was sitting in class, literally saying in my head, yeah, but that will never be me. Well, surprise, it was. And it could be you too, tomorrow! Also remember "the things you take for granted, someone else is praying for."

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