Again and Again...Cant seem to accept this darn cf!!!

[anonymous]

Every month or so I get really depressed. Im on a good road to actually accepting myself and my life and doing what i need to do and then BOOM....i start getting depressed and hating my life and my family for having me and this stupid disease. I cant seem to really accept myself and this disease. I find it stops me from doing things a normal 21 yr old girl would do and i just cant let that go. I lost my best friend 4 months ago from this stupid disease and it hasnt really gotten better for me from there. I cant seem to stop thinking about the age im gonna die at and how my life wasnt really spent doing the things i want to do. I feel like a loser who cant move on and who cant get over the fact that i have this stupid disease which im gonna die from which ruins my lifeeeeeeeeeee!!!
Depression pills dont help me much, i still feel the pain. I see a psychiatrist and that doesnt help at all. My doctor tells me i have to realize im 21 years old and that life is gonna go on and i cant stop that and i have to move on with it and do what i gotta do BUT im not happy with that answer. WHEN CAN I EXPECT A CURE FOR THIS BULLSHIT?? Im sick and tired of hearing about commercials for cancer and aids and blah blah blah and although those are important too i feel CF is just as important. When will we ever see a brighter side?
Please, give me some light and understanding because im just dumbfounded right now.
Ashley 21 yr old female from canada

 

[pedalup]

DEAR ASHLEY, I JUST READ UR POST AND IT SADDENS ME..... MY BRO WHO IS 23 HAS C/F AND HE REFUSES TO TALK TO ME.... HE HATES ME FOR WHATEVER REASON AND I CALL HIM ALL THE TIME BUT 9 TIMES OUT OF 10 HE DOESN'T ANSWER THE PHONE.... I THINK HE IS DEPRESSED TOO, AND HE DOESN'T HAVE MANY FRIENDS... I LOVE HIM SO MUCH AND I WISH HE WOULD TALK TO ME BUT FOR WHATEVER REASON HE DOESNT WANT TOO . BUT NO MATTER WHAT I WILL ABSOLUTELY NOT GIVE UP ON HIM!!! ARE YOU CLOSE TO YOUR FAMILY? ANY SIBLINGS? IF YOU HAVE NOONE TO TALK TO YOU CAN TALK TO ME..... MY EMAIL IS JOYBCKR@YAHOO.COM................KEEP YOU HEAD UP FOR TOMORROW IS ANOTHER DAY...... JOY

 

[anonymous]

Ashley, glad you posted that message. Sometimes I feel the same way. Lately though it has been worse. I am not sick or anything, but I wake up and stay tired all day long. I've been oversleeping and late for work, and I dont feel like doing much. Your doctors dont seem very encouraging to you, and that is something that frustrates me about CF docs. I had one tell me one time that "you are going to die from this disease". That just ran all over me!! My life is not in a doctors hands; never has been, and never will be. We don't need to be told by anyone, let alone a CF doctor, that we are going to die from CF. What I have to do is surround myself with positive people who have positive attitudes and focus on what I can do with my life to have a positive impact on others. Right now, I have began talking to a young 13 yr old girl w/cf. She has a feeding tube, 35% pft's, been in hospital 35 times, and her name is on "make a wish foundation". Thats just to name a few things she is experiencing. I can tell her what the doctors tell her or I can talk to her, make her laugh, encourage her to exercise, and just be there to talk to her when she needs encouragement and motivation. I have to remind myself thats it's not all about ME and MY struggles and probs with CF.

Personally, I seek guidance from God. I believe He has a purpose for me, and I will be here until that purpose is fulfilled. Whether it be ten days from now, or thirty years from now. That would make me 56 by the way. I dont know if you are a believer or not, but that is what helps get me through each day. God has been there for me when doctors couldnt. Doctors couldnt make my parents stop smoking during the eighteen years I lived in it, but somehow my PFT's are always in the upper ninety's. I could go on and on. I hope you can find purpose soon. I know it would be harder for me as well if I didnt know I was put here with CF for a reason. If you don't believe in God and have no desire to, I hope you will find some positive people to have as friends who will encourage and lift you up , and help you to not focus on CF, but the other good things life has to offer, whether or not we have CF.

sincerely,

ccflewallen

 

[anonymous]

My Dear Ashley
How I wish that I could come over to you and give you one hell of a hug and take all your problems away. I wish I could bring Matt back and the two of you could carry on your wonderful friendship, I wish I could take CF away from you and everyone else, I wish I could take away the worry that you carry with you all the time. I wish I had the answers you are looking for but I don't. Just remember Ashley, Matt wouldn't want you to feel this way and I'm sure he is looking over you at all times just wishing for nothing but the best for you and trying to tell you to keep you chin up. Life seems so unfair at times but I guess we have no choice at times to accept it.
Remember I'm only a phone call away anytime.

Love ya sweetie

 

[Ender]

Ugh Ashley,
I know exactly how you feel, and i find myself there a lot as well. I think a big factor in my depression is the fact that i don't take great care of myself, and so when i feel crappy or whatever, i get depressed. I think that if i did more for myself, then the times i do feel down, well man, what can i do, I've done everything i could for myself.

Regardless, this disease sucks, and we have a lot of weight on our shoulders. That we cannot change. It's how we deal with them that matters. I guess at the end of the day you just have to ask yourself how strong you are, and how far you are willing to go. You're 21 now. Can you see yourself getting to 40, 50? Do you want to get that far? I can, and I'm not gonna give up now, not to something that's taken so many away. At least not without a fight...

 

[anonymous]

ccflewallen,
I couldn't agree with you more. I don't have CF But I have two loving girls 17 & 18 yrs who do. I wish more than anything God gave it to me, 100 times worst. For 18 yrs. or lives has always been taking care of them. I don't understand why at time, except he has a reason for everything. I know we have this disease in our family, and he knows that we have to beat this. I know in all my heart WE WILL BEAT THIS DAM DISEASE. AND WE WILL IN OUR TIME. Don't every give up. I know he will not let us down.It is so hard at times I know, and you can't imagine how a parent feels, and how much it hurts. I been so hard on my girls with treatments, and at times I know thay hate me, but I give all I can.Just keep the possitive attitude, we will beat this.
FT

 

[Lilith]

Ashley,

I understand completely. I have my spells of depression, too. Matter of fact, I've recently been trying to pull myself out of another one. I, too, find it funny how you see stuff all over the place for cancer and athesma and AIDS, but nothing for CF. I also find it annyoing that they can't find a cure for any of these diseases, but they sure can come up with things like Viagra... -_-; That just makes me sick...shows you people's real priorities, doesn't it?

I'm sorry that you lost someone close you to because of this damn disease. I wish I could say something to comfort you, but I don't think there's anything anyone can say. I've stayed up long nights crying, thinking about how bleak my future is, wondering if I'll be happy with what I've done in my life at the end. And my worst fear is that I'll die alone. Sometimes I just get so tired of fighting it that I wish it would just take me down and get it over with...

But then I think of my family, and how much they need me. My sister, though she doesn't have CF, has been through a lot in her life, and though I don't think anything of the things I have to do every day, she sees me as her inspiration to keep going, herself. I also have two other people in my life that keep me going; my boyfriend, who would never get along without me, and my best friend Sarah, who always keeps on the positive side. I agree with ccflewallen that you have to surround yourself with positive people. Sometimes when I get upset, I watch a funny movie and try to forget about it for a while, or I call up Sarah and explain my depression. She usually helps me to feel a little better.

I personally don't believe in God, but I do find comfort in some type of spirituality on my own part. Maybe that would help you as an alternative. I meditate regularly to clear my head, which calms me down and gets my mind off of the bad. You could try something like that.

I wish I could be more helpful. But like Ender said, if you want to get through this, you have to pull up your boot straps and tell yourself that you can fight the monster for as long as it takes. I strongly believe that your overall health not only depends on the physical, but your mental state as well. If you believe that you can kick this thing's a**, then you will. I think we all have to keep believing that...

 

[Mockingbird]

Expecting a cure? ha ha! Screw the cure! =-) I can sense so much rage and power in your post, CF doesn't even stand a chance against someone like you. =-) You know the saying... When life gives you lemons, chuck 'em right back at life's big fat ugly head! ha ha ha ha!

Seriously, though, life can suck so much... especially when friends fail you. There's so much pain and frustration and everything else, it's like a bomb sitting right in your chest. At least, I know that's how it is for me. And of course there's really no use getting over it, because it always cames back. All I can suggest is use that frustration and direct it at something you can control. It might be something violent, like beating the crap out of a punching bag, or something calming, like making pottery, or something. That's what I did, anyway. Of course, I think I went through about a thousand little hobbies before i really found my outlet. So, try something and see if it works. Then, if it stops working, move on to something else. I guess what I'm getting at is it helps just to be able to forget everything for a while. No matter what, life is always gonna keep coming back and putting a dark cloud over everything, so it helps if you have something that life can't possibly touch. =-)

 

[anonymous]

Hi Ashley,

I'm 33 and at times can relate to your despair that we have to bounce back from. I had a turbulent time with my parents up until I left school with uncontrolled anger and aggression which as well as from adolescence was compounded by my CF. Since then I haven't had any resentment towards my family. I resent CF and the sadness that my family have had to endure and what my family and friends will have to go through when my time is up. I consider myself lucky that I have kept fairly healthy all things considered and always had a positive mental attitude with good family and friends around me. I was highly into the gym from the age of 18 to 25 and was healthier and fitter than most people I knew. I've lived a fast paced life and done things in my life that many people free of disease haven't done. I've always pushed myself more and in some ways punished myself because of it. My health has paid the price for this at times, and it has been on a decline for about the last 8 years. At some points I have previously been guilty of burying my head in the sand. Death isn't the thing that scares me. The demon for me is decline in health and through that loss of my independence and mobility. I have started to enter this area on a couple of occasions and hated what was unravelling in front of me. I love life and don't mind dying its just the thought of the in between stage I have real problems. I really sympathise with anyone that has reached that stage because I am a strong person and that is the point at which I don't know how I will cope.

When I was 16 I was turned down for a job which looking back actually helped me because it just made my resolve all the stronger. It also had the effect, rightly or wrongly, of not telling anyone that I have the disease as I didn't want to be judged by anyone as anything but a normal person and have the same expectations put on me. It is hard having the motivation to get up in the morning doing physio and treatment, working 10 hours a day, getting home at night doing physio and treatment + holding down a relationship. I hate routines and this is a routine that I know I can never break - day in, day out. Having an understanding partner helps and she is the best thing that happened to me and I'm so lucky to have her. I met her just before I came to Australia and she took the gamble and came with me which has paid off for both of us.

I'm from the UK, and decided I wanted to live in Australia so got a job here, got sponsorship, and moved to Australia 2 years ago. I wanted to experience life in a different country in a different environment without the foundations and pillars that supported me in my home town of London. I was stupid enough to get carried away with life here and ignore my illness by neglecting my care and I taking too much time to arrange my outpatient hospital care when I arrived. When I got to the hospital my capacity had gone down to 20%. I asked how long I had got and was told with my declining health I'd be lucky to live another 5 years and they wanted me to start speaking to the transplant team. Since then with treatment from the hospital and increasing my exercise and maintenance time my capacity got to 33% over a 3 month period while I have have still been working. Last time I was at the hospital it was at about 29%. Since then I feel like I have made a small improvement again as I have been increasing my exercise and now get to the gym 3 to 4 times a week and brisk walk for 30mins - 60mins a day. From my own personal experience the best way to improve quality of life is to exercise. It improves my mobility without question and the endorphins it releases really help to fight any depression. I go to the hospital again in 3 days so guess I will find out how well I have done then and what ever my results I will try and improve on for next time. I still haven't been admitted into hospital yet for IV's so guess I still hold a joker to use. I can't express my thanks and admiration enough for the CF clinic here and the way I was welcomed into it. I feel I'm in the best possible hands.

In the few years preceding my move from the UK to Australia I have had extra unrelated health issues that have had a negative impact consisting of non CF related hospital admissions included being misdiagnosed with a blocked intestine when I actually had a ruptured appendix. At this point I used up one of my lives, and to cut a long story short ended up requiring a 10 hour operation that I was lucky to recover from and put into Intensive Care. I went from 70kg to about 48kg over the three months I was in hospital, and not being able to do any physio combined with essential general anaesthetics really had a negative impact.

What am I trying to say? I know its as hard as hell sometimes. I am also fully aware I have been blessed with good parents and good friends and basic strong immune system. I am also lucky that my brain chemistry and wiring makes me a optimistic and happy go lucky person. I know my time is running out although how quickly I don't know. I'm not a religious person. I've researched it - Christianity, Islam, Hindi, Buddhism, but I don't need the strength of a particular religion to get through each day. I am a spiritual person however and I do believe there is much more to our life and this universe than we will find out during our time on earth. I just made the unconscious decision from when I was about 18/19 to live my life how I wanted to and not to let it stop me do anything within my capability and what ever my capabilty stretch it a bit further. That's all I can do. I don't loose site that everyone is going to die, its just a matter of when and making the most of the life on this earth that we have. If I died in ten years or two years from now I want to look back and say yes I made the most of that time. I know there are healthy young people dying of worse, man made reasons than I am, just look at the loss of life in Iraq or the genocide that has taken place in Africa. I'm just fortunate to have had a better quality of life and standard of living on the way to death than these people have never known.

This is the first time I have really expressed my views to anyone on life and CF. I don't know whether my own personal experience or opinions has been of any help to you, but I hope in some way they have.

Good luck and stay strong

Rick