Saturday, April 18, 2009

Things You Probably Don't Know

Tonight was a fun-filled evening, and I had a pretty good day, but I thought I'd take the opportunity to fill in my thoughts on certain aspects of my Friday.

10:30 am: Wake up
"Shit, I have to leave in an hour for my appointment."

10:45 am: Nurse calls
"Shit, I don't have time to eat breakfast."

12:15 pm: In with therapist
"Shit, I have nothing I want to talk about."

12:30 pm: Complaining about a person I'm not getting along with to therapist
"I can't believe he just suggested that I 'teabag' her... but the idea of her receiving random tea bags in the mail everyday is amusing."

1 pm: Arrive home
"Shit, breakfast time and then nap."

4:30 pm: Wake up
"Shit, I don't think I can get out of bed. Shit. Must take shower, get dressed and be downtown in 1.5 hours. Shit. I really don't think I can get out of bed. Must take Tylenol. Must get out of bed. Ow."

6:10 pm: arrive late, walk from Union to cafe.
"Shit. This walk is longer than I thought. Fuck off, I'm not in mood to deal with you people and your healthy lungs. Fuck you for picking a restaurant that is on the 2nd floor and far away."

6:15 pm: Arrive at cafe
"Shit. I can't breathe. Shit. I'm not hungry."

6:55 pm: Suggestion made that we run to the union to make it to the dance lesson on time.
"Shit. Well, fuck you, I don't run. I barely walk. Fuck you and your healthy lungs."

7:01 pm: Walking down the stairs - two persons complaining about legs being sore from working out.
"Shit. There is no fucking way you are in as much pain as I am and I'm never going to say anything about it. Because that's not what I do. I feel like I've been hit by a truck."

7:10 pm: At Union - showcase for the dance team I got kicked off of last year.
"Shit. I don't want to be here. God Damn It. They still use the donation box I made. I don't want to be here. God Damn It. I can't believe this. I don't want to be here."

7:59 pm: Watching the few attendees of the dance mingle and interact.
"Hahahahahahaha. There is absolutely no one here. Karma's a bitch. I love that the team that kicked me out can't get people to come to their showcase. Schadenfreude, bitches."

8 pm: Standing around doing a lot of useless nothing.
"Shit. They want to take their car and I want to take mine. I hate riding by myself. I feel left out."

...We arrive at the place where we're going to watch the dueling pianos show, and this show is probably one of my favorite things to do EVER. I LOVE it. I know all the songs and sing along and it's a crazy good time. I'm in a much better mood, and yet, I still can't help these thoughts:

11:24 pm We're discussing when we should leave - they want to go, I don't. I call them party poopers, and one of my friends says, "Well some of us don't get to sleep all day."
"Shit. I'm going to cry. Breathe in. Breathe out. Breathe in. Breathe out. I don't think he meant it that way, but FUCK, all I've ever wanted was a career and enough energy to do anything but sleep through a gorgeous day like today. Focus on the music, Carla. No crying. No crying. No crying."

11:35 pm My friends across the table are falling asleep and I want to stay until 2am.
"Shit. The one night I have energy to last the whole time and I want to stay and just be normal, and my friends poop out on me. Are you kidding me? This is my favorite outing, I'm having a fabulous time, and you want to make me leave. Really? You can't let me feel normal for an evening? I'm going to have to give in and be a nice human being and take them home. Shit."

Today I slept all day except for the hour I was at the therapist. I wanted to be outside in the fabulous weather. I finally got out of bed and showered. I made it to dinner out of breath, but I made it. I forced myself to eat. I forced myself to be civil for the hour we were at the dance when I really just wanted to destroy everything. I got to go to the event I truly love - all my favorite music and singing along and it doesn't take a ton of energy.

I'm really glad I found the energy to go, despite how awful I feel. Awful in the every part of my body hurts kind of way, not in the my lungs are so bad I need IVs kind of way.

And apparently, the dialogue in my head really enjoys swearing.



Kyra S. said...

To whoever made the "Well some of us don't get to sleep all day" comment:
I don't get angry enough to swear often but F***. YOU. Seriously. Trade lungs with Carla for a day and see how well you do. To Carla: that comment totally deserves an ass kicking. Although they seem so completely insensitive they might not even feel it, so I wouldn't waste your energy.

gahitstoni said...

I understand it gets difficult, but you really need to try and push through it. Talk to some of the people in "My Parents Beated Me". They are getting by with shit for lungs and I think you can too. I understand that when you don't have a lot of oxygen, that it's easy to get tired a lot, but if you get up and do things you will find it gets easier as the day progresses. My lungs are shitting out on me too right now and I'm still pushing through it when I should probably be in the hospital, but I'm still doing my school and an internship and I'm probably getting down to the lowest lung capacity/function I have ever had. Sometimes you just need to try and suck it up, no matter how hard it seems. And those are my words of advice. Sorry if they seem offensive.

Tabitha said...

As another fellow CF'er, I understand where youre coming from. You have some killer bacteria in those already crapped out lungs and guess what! Its damn hard to fight it...

One time this "friend" of mine said "Cf is your excuse for everything" as I was explaining why I didnt do a homework assignment or why I didnt go to class a certain day. And I said to him, your right b/c if you had to fight an infection FOREVER you would be damn tired too. I told him, you know when you get a cold in the winter and you cough up green stuff, well, thats how I feel 24/7.

I do understand the importance of trying to do exercise when you do have energy.. its kinda of a double edged sword for me... I cant breath but on those few occasions when i do keep up with something it does increase my capacity by a bit, but is sooo hard.

And as for "My parents Beated Me" most of them on there are clueless, sorry, thats my opinion and its why I left the group on facebook. Half of them dont even do their treatments anyways.

Sorry so long. I just feel like I understand a lot of how you feel.

Jen said...

I have thought about commenting a few times and decided not to because I didn't want to offend you or make you mad. I don't know if you read my blog but I am 27 I am on O2 most of the day I am on the tx waiting list and I get up every morning at 8:30 (on weekends I sleep in till 9:30.) I get up do my treatments/vest eat breakfast and then I work (my job lets me work from home till after my tx) and that's all with an FEV1 I can almost guarantee is lower than yours. I am not saying these things to make you mad but when I read your posts about you sleeping all day I just know that isn't beneficial for you. Also, I am sure you don't want to hear this either but has your doctor ever recommended sleeping with O2? If your lungs are as crappy as you say (I don't know) then you might benefit from that. You would get a better night sleep which will have you feeling more refreshed when you wake up and not feel so tired through out the day because you aren't working so hard to breath. I know its a crappy thing to have to do but maybe at this point you have to put aside things that you don't want to do to start feeling better and being able to do more fun things during the day. Again I hope you don't get mad about this I really just wanted to help.

anonymous said...

I don't care if I offend people. I have cf and lungs filled with cepacia and MRSA, but the idea that I should begrudge people who are healthy has never crossed my mind. They have invisible problems too, making it out of line to try and make comparisons. I think that despite being hard, only focusing on ones own problems prevents one from seeing the joy in life and so they never live.
Additionally I am a member of "My parents beated me" and will defend it. I take offense to previous comments about this group. I do my treatments everyday and take health so seriously that I refuse even a simple beer. I wake up at 4:30AM (vs 10AM) to have all my treatments and exercise to be ready by 8AM. I also manage to force myself to swim 1.5 hours every day to clear my lungs. If this is being clueless and not caring I guess I need a new definition.
The difference comes because the people in this group are positive and love to live life instead of complain and make things worse on themselves. They deal with it. What makes them great is they are both honest and positive. It is no one's responsibility but your own to live life and enjoy it because the world doesn't owe anyone anything. People who get a lot from life are those that work for it and realize that no one owes them anything for the simple fact they exist.

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