How to live by yourself if you have CF and CFRD?

[anonymous]

Ive seen so many posts from people with cf that say they live alone.
I am a 27 yr old male and I still live with my parents.
My question is HOW can u possibly live by yourself and have cf, espesially if you have cfrd?

I dont have many problems with my lungs. My biggest problem with my cf over the last four years is my major decrease in energy. I just cant seem to do much at all without getting very tired.

And I am very depressed. I take one class a semester at college but I really cant work because of my energy level. Even If I could its been so long since ive worked I would not really be able to find a job where it would pay for my costs of living.
I really would like some advice. As I said before this had made me VERY depressed.
Basiclly all I do is stay at home, I only have one real friend besides my family and both my freind and family members are married and work and have families so I feel like a tag along when I do see them.
I would really like to start a life of my own where I can have purpose instead of being just a waste of space. It seems like all my life is, is me trying not to get sick ...
I want more than my life to be trying not to die.... whats the point of living when your not even REALLY living?
How can i get a life OF MY OWN?

 

[anonymous]

Your job in life is to stay healthy, it's a full time job. Fortunately, you have the means where you can focus all your energy to do so. Stop feeling sorry for yourself and get off your booty. If you can't hold a job, volunteer. Get out, do something, meet people. Good luck.

Oh', I'm in the same boat. 26 w/cf, at home.

 

[Diane]

Hi, I have cf / diabetes ( 24 years) / and b.cepacia ( 7 -1/2 years). I have lived alone for about 7 years now. I am on disability and also have a part time job ( always get paid in cash ). I can certainly understand your fears of living alone. I have those same fears also, but i also want to live the way i want to. Its scary to be out in the world on your own, but i am sure if you found a way to do it, your family would be there to help you. The lack of energy i can sympathize with..... and i found a solution for it. I started taking Glutathione last May ( 2003) and it has made a MAJOR difference in my energy level. When i first was diagnosed with b.cepacia, just taking a simple shower was totally exhausting. Walking out to the car was tiring. Then i read about the Glutathione and decided to give it a try and i am SOOOOO happy i did. I now have energy like i used to. I come home from work and instead of flop on the couch and rest like i used to, i go outside and work in the garden or go out shopping, anything but sit and veg on the couch due to lack of energy like in the past. You can email me if you want and ill send you some links to read more about glutathione. It has helped me tremendously and it may help you in your quest for some more energy that may lead to some more independence.
jinxnick@aol.com
~Diane 39 / cf / diabetes / b.cepacia

 

[anonymous]

the true meaning of this life is LOVE.THE BEST THING you can have is living with the people you love.Try to stay strong and give a positive boost to yourself.Smile and make the others happy. Live.
My wife has cf We live together 10 years now in our own house next to her's parents house.Every day we give a fight to live day by day the best way we can.She gets tired also (she is 46 kg only).Fighting every day for love is the way out.Smile and never give up for the people you love, and they love you.
The best thing for me is to make her happy,to live small magic moments everyday.Love is the cure for all.Dont't waste life.Love and live
Olympus Greece

 

[kybert]

i too dont know how people manage to live alone with cf. but, dont feel bad about living at home. although i dont live at home, i live with my partner, my mum is always around and i know i will eventually end up back at her place in years to come anyway. as long as im trying my best to be independent thats all i need to know, whether its something as small as managing to take a shower when im really sick or something bigger like cooking a 3 course roast for everyone lol. if you keep thinking that you should be able to live the life of a person without cf you will end up getting real down about it. if you set up unrealistic goals you will be disappointed. maybe you could try and find a job one day a week? that way you could chip in with food shopping for your family and buy yourself things and not feel so useless [even though youre far from useless in my eyes]. find a hobby of some sort? i dunno, what do 27 yr old males like to do?? you like cars eh?? just trying to give you ideas. dont worry about the 1 friend thing. i only have a couple of close friends. and to be honest i like it that way. sometimes i think 'oh gee why cant i have a zillion friends like normal people' but them im like 'cummon kylie. a. how many of them would be true friends? b. where would i get the time and energy from to keep these friendships going c. where would i get the energy from to do the things they want to do? [not everyone would be content with a relaxing afternoon with me]'. youre not a tag along either. i go everywhere with my family but i dont feel like a tag along. they are my family!! im suppose to 'bug' them whether i have cf or not.

all i can say is relaaaax. youre doing the best you can and thats all that matters. for alot of us the only purpose in life is to try and not get sicker and as second poster said, its a full time job in itself. so dont stress about what you cant do, focus on what you can do!

 

[anonymous]

I say get out and do something and take a risk. You are right, you cant spend your life trying not to get sick, plus, laying around all the time certainly isnt helping.

Get out, go on a vacation, do something. If it means you have to drink a lot of coffee to wake yourself up, do it. Try the glutathione! Just do something different, force yourself, and your mind will follow you with positive thinking. My advice is to go somewhere, yoiu dont need a lot of money, go anywhere different, see how many people there are in the world. Your life is not dire, and although we people with CF have a sh*tty disease, there are SO many worse off...all of a sudden when you consider that, it makes it seem like we have it good.

 

[ButtonNO1]

I AM VERY SIMILAR TO YOU I AM 20 AND I STILL LIVVE AT HOMWE WITH MY PARENTS I NEARLY MOVED OUT A COUPLE OF YEARS AGO BUT I FEEL MORE SECURE BEING AT HOME COS WHEN I DO GET ILL MY MUM IS THERE TO CARE FOR ME . I DO HAVE ALOT OF FRIENDS THOUGH THEY ALWAYS VISIT ME IN HOSPITAL AND BRING ME LOTS OF PREZZIES . I DO NOT WORK EITHER AS I DO NOT HAVE THE ENERGY TO DO SO . I DO LIKE TO GO OUT AND PARTY WITH MY FRIENDS IF I AM WELL ENOUGH ALTHOUGH I SUFFER THE NEXT DAY . I DO NOT HAVE CFRD YET I AM BEING TESTED FOR IT SO FINGERS CROSED. KEEP YA CHIN UP BEST WISHES FROM JO