I'm really on the fence about reading other CF'ers stories, because it's really difficult to remain optimistic about the future, when you read how sick someone is and everything they and they're families are going through. We all need support from people who understand what we go through, but it's really tough to remain positive and strong, especially if they have little to no support otherwise. I've had Cystic Fibrosis all of my life, but until recently, I didn't know just how horribly bad this disease actually IS, because it doesn't just effect the lungs & pancreas, it essentially effects all of our organs, until the entire body become mutated. To see people die so young and so horrific, is sad and it's scary to think of all the pain we have to go through, especially if you have to get a double lung transplant and you can't help but to wonder... if that's gonna be you someday. So, I'm just wondering how people deal with the anxieties and hopelessness and not become defeated by this horrible disease.
Is knowing and reading other CF'ers stories better or worse?
- Thread starter Sonja35
- Start date
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Hi Sonja35,
I can understand your concerns.
I was brought up with a more positive view on dealing with CF, although I've had social challenges because I was "different" in comparison to my peers and therefore was given a hard time. I was still taught to dream, make plans and perhaps most important, know that I always had family for support.
I've pretty much been "proactive", came across it by mistake when I wanted to get into the martial arts at an early age of 18. I still find some ways to excercise, and visit doctors when I'm not feeling up to par.
I won't deny I've had my lows, where things felt hopeless sometimes, or that some things were showing how horrible the disease was, but again, I found support to help that pass in time.
Although I have good lung function for my age, I cannot relate to TX, so I won't say how to feel. I just know that if it were my lungs that would go, then I've lived a good enough life that I wouldn't take that risk, especially when someone else may want it worse than me...
I can understand your concerns.
I was brought up with a more positive view on dealing with CF, although I've had social challenges because I was "different" in comparison to my peers and therefore was given a hard time. I was still taught to dream, make plans and perhaps most important, know that I always had family for support.
I've pretty much been "proactive", came across it by mistake when I wanted to get into the martial arts at an early age of 18. I still find some ways to excercise, and visit doctors when I'm not feeling up to par.
I won't deny I've had my lows, where things felt hopeless sometimes, or that some things were showing how horrible the disease was, but again, I found support to help that pass in time.
Although I have good lung function for my age, I cannot relate to TX, so I won't say how to feel. I just know that if it were my lungs that would go, then I've lived a good enough life that I wouldn't take that risk, especially when someone else may want it worse than me...
beautifulsoul
Super Moderator
There are other people with CF that are in similar emotional stress. You are not alone. I understand exactly what you mean. I feel that way too sometimes. I try to find people with CF that are more optimistic with life in general even during their struggles. We live with tough situation's and it definitely becomes a challenge! I try to limit the amount of CF patients I communicate with regularly. That way I'm not so depressed & upset if there are multiple people that are all sick at the same period of time. If that makes any sense. I also take a break from the community every now & then. That also helps relive the overwhelming/ depressing feelings.
feel free to message me if you ever need to vent or simply need a friend.
hugs to you
(L)
feel free to message me if you ever need to vent or simply need a friend.
hugs to you
(L)
It's not all hopeless. I agree that a lot of the stories we hear about CF people tend to be on the negative side.
But there are lots of people living normal healthy lives with CF. I am 37 and was diagnosed at age 3.
I am lucky to lead a normal life and have devised some strategies to keep myself in excellent health. In fact most people I meet or work with don't know there is anything wrong with me.
I have a blog where I share some of my tips and recipes for healthy living at www.cfandhealthy.blogspot.com
Good luck and stay positive!
But there are lots of people living normal healthy lives with CF. I am 37 and was diagnosed at age 3.
I am lucky to lead a normal life and have devised some strategies to keep myself in excellent health. In fact most people I meet or work with don't know there is anything wrong with me.
I have a blog where I share some of my tips and recipes for healthy living at www.cfandhealthy.blogspot.com
Good luck and stay positive!
beautifulsoul;bt78 said:
You DO have a beautiful soul to extend your heart and thoughts to a complete stranger! It made me teary eyes when you replied the way you did, because I normally don't get that kind of support, not even from family. I'm really happy for people who have a boyfriend/husband/great family & friends to share their lives and struggles with - yet at the same time... I'm envious cuz I WISH I had the same. I REALLY feel "jipped" like Meg Mucus said in the documentary for 65 Red Roses. Did you see that? Quite compelling and informative and even though I made my family watch it, in hopes that they would gain some insight and empathy... it did nothing of the sort. I was hoping that maybe they would grasp the understanding of just HOW MUCH support I need NOW and in the future, as I get sicker. But, that too proved to be wishful thinking. I try to rationalize why they don't want to be around me and maybe cuz they're afraid of losing me or too afraid to see me get sicker, but families are supposed to be there no matter how bad things get and no matter what the circumstances are... they're just automatically supposed to be there to support you 100% no questions asked. At least that's what my family morals tell me. I would never ever question anything regarding my own kids needs and I would be there without a doubt! So, how could I be so different from my family and they're values? I will never understand, but like I said in my initial response... it makes me very fearful for the future and if I ever had to face getting a lung transplant, I would opt not to and I probably wouldn't qualify cuz in order to have such a seriously complicated surgery... a person would need LOTS of support - which I don't have. So without a doubt... I know I wouldn't make it through something like that and I would rather just die than to face something like that - alone! There are people who are far more deserving of having a second chance at living and loving life... way more than me and I would definitely let someone else have a chance, before me. Pretty sad huh? Thanks for listening to me
