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Thursday, August 27, 2009

Tough times

There are some tough days you will go through when you have CF, and I've had my fair share of them. But here lately its like i've been treading water unable to get anywhere.

It's my LEAST favorite thing to do, when I post a negative topic, but honestly this is the truth of CF. Sometimes you get tired of it and you just want it to go away. And the truth is, it wont. And you definitely can't help it by not doing anything at all! (I'm talking to myself here)

I've got a dilemma here...

I HAVE a disease, there's no doubt about that, It's Cystic Fibrosis. I have to do many things daily to TREAT it. There is NO cure. If I don't do the things to TREAT CF daily, It won't be good for me.(lets just put it that way) 1,000s of people go through the same exact problems as me DAILY. 100s of thousands have it, or something else, 1 billion times worse than me.

Here's my dilemma...

We live in a WORLD were we are supposed to be politically correct and aren't supposed to offend anyone. Sometimes my coughing is loud, offensive. Sometimes me saying "don't smoke around me I HAVE CF" is offensive.

So what do I do??

I ignore my disease, push it to the side, hide it away, only deal with it when I'm alone in my room. BAD

Here's another problem, I mix the WORLD's expectations with the CHURCH's expectations.

When your not of the CHURCH, you're of the WORLD. The world doesn't want us to offend people, and to be politically correct all the time. I try not to offend people at the church either.

1.) Good news and bad news

When people of the church hear a good report its a GOOD thing. But then if you go around spreading bad news its NOT GOOD. It's offensive.

2.) Claiming the disease

Your not supposed to claim your disease as "your" disease. But I say, "If you don't claim it how will you TREAT it?"
What are you doing treatments for? uhh... Nothing.

3.) Talking about the disease

It helps me to talk to people with CF about CF. I learn a lot on what I can do less, or what I can do better. I also like to talk to my family and friends about CF. But quite frankly, people get tired of hearing about you talk about CF all the time.

So what do I do??? Again I put it away like it's not there, I ignore it, neglect my own health to make people happy, to be politically correct.

No one likes to hear you talk about how much weight you've gained or what color your spit was. They're trying to LOSE weight not GAIN.

This is just how I've been feeling lately, I know it's bad and I should forget about what people think and just take care of myself no matter what.

Please feel free to comment or message me at caseyjones343@yahoo.com and PLEASE correct me if i'm wrong on ANY of this logic! This is just how it's been presented to me lately and I really don't like it and don't know what to do about it.


Cystic Gal MEP said...

I had a difficult day, too, Casey. I think that you are dealing with a lot of mixed up emotions all at once. The church and the world - their expectations of your feelings - do not control them. You are feeling what you are feeling and if ANYONE judges you for it, they shouldn't.

I want to think more about this, but I want you to know that you can share any and all of your opinions here and your CF readers will support you.

You can't pray or hope or speak CF away. And if people think that talking about the negative parts, is stopping you from praying and hoping and speaking, that's just silly. You can pray for good health, and hope for a bright future, and be a great CF advocate, and still have some negative feelings.

This disease is the enemy. Not you. You are the dragon.

Love, CG

Dan said...

My man, you have nothing to be ashamed of, nothing to hide, and if anyone is upset about it they can talk to me. And you can tell them that!

People in the church should be your first line of defense. They should be the go-to people. If they aren't, find a different church. If that church isn't either, keep looking.

I don't want to baby you. You're a man, so you have to be a man, but complaining (to use a non-sailor word) is part of life. Ever read Lamentations?

Don't forget that God gives trials. Your trial happens to really suck. Mine is a number of things, to include a daughter who is in your shoes. This isn't easy.

Listen, you can complain, argue, spit, and talk all you want as long as you are actively trying to beat CF. The day you give up on the disease or give in to those who would be offended is the day you lose your right to be upset. Until then...live bold.

Anonymous said...

Excellent blog! I'm a mom with 2 boys with CF (20 and 22) and one without CF (19). I'm also a writer and a Christian and I say keep writing and keep sharing, you may have a gift there!

Anonymous said...

Casey, you hit the nail right on the head (or whatever that saying is :) ) for me. Especially #3... I feel like people don't want to hear me talk about CF all the time. But what else is there to talk about when CF takes up so much of your life. It is funny to me too how people don't even ask about my sickness--I'm talking close people like famiy! And instead of addressing how much this upsets me, I have become bitter to these people. I sit and listen to them go on and on about their perfect lives and jobs and keep everything I have went through that day hidden away. In the end, I feel extremely lonely and secluded. That is why I am so thankful to have found fellow cfers that have been there and done that and when I do talk about CF, they want to talk about it too lol! Thanks for sharing--Awesome post!
gingerloveslife @ cf2chat