Message Boards for the CF Trust

Replies: 10 Pages: 1

-x-SaRaH-x-

Posts: 37
From: Northampton
Registered: 29-Nov-2006

Arrghhh! Im sick of feeling like this

Posted: 30-Nov-2006 18:15

Reply

Arrghh! I think i've posted two of these topics in the past and i'm posting another - I just cannot stand feeling like this! I hate CF, I hate what it does to me! I read a stroy in The Sun todays about a little boy who has been diagnosed with CF

and it's just made me feel crap again! The one line which I hate "Those with CF have a life expectancy of just 31" Just 31! JUST 31!!! Gah that ****** me off! I'm sick of hearing/reading that phrase! I'm 16 now so technically half of my life has gone! And what have I got to show for it?! Aboslutely nothing! I have so many goals etc. and I can't help feeling that theres on way of being able to achieve them with a life expectancy of that!

It just pisss me off hearing that phrase! I am determined to live long after 31, but the chances of that happneing? slim! I hate how I have (we have) to work x2 as hard to stay half as well. I'd love to be able to live into my 60's and have to worry about my pension lol and all other stuff that old people tend to worry about but no, again chances of that happening? Slim!!!!

Arrghhh!!!!!!

DimBloke

Posts: 102
Registered: 11-Nov-2006

Re: Arrghhh! Im sick of feeling like this

Posted: 30-Nov-2006 18:26

Reply

When I was born the average life expectancy was 16 years. Now it's 31 - and it will keep moving upwards as treatments improve. Try and focus on enjoying your life and achieving your goals

tracie

Posts: 148
From: west midlands
Registered: 06-Nov-2006

Re: Arrghhh! Im sick of feeling like this

Posted: 30-Nov-2006 18:35

Reply

when Dave my son was diagnosed one dr told us his life expectance was 21, well he will be 21 in Jan and is still going strong, try not to worry about it and just enjoy life to the full you never know what's around the corner

fool

Posts: 16
Registered: 06-Nov-2006

Re: Arrghhh! Im sick of feeling like this

Posted: 30-Nov-2006 18:49

Reply

try not to let things get you down - take each day as it comes and dont be too hard on yourself

my mum was told when i was 3 that i wouldnt likely reach 5 -
but i am now 26 and refusing to go away!

- i know a lot of people will have similar stories/been told similar things.

i know what you mean though about the 'average life expectancy is 31 years ..' - i hate it, as i assume most CF people do, as its just a reminder what a f--ker this disease is!

Tim Davies-Moss

Posts: 145
From: Shropshire
Registered: 06-Nov-2006

Re: Arrghhh! Im sick of feeling like this

Posted: 30-Nov-2006 18:51

Reply

be optemistic.. the way i look at it is like this..

we are lucky to know we are ill, so many people dont get the chance to tell there family they love them.. they dont get the chance to do things right before its too late

we have the opertunity to make the most of our time.

fair enough.. we have to work twice as hard to get half the result but.. when i help family they appreciate it more.. because they know how hard it is for me to do what i can .. when i can

when i was diagnosed .. i was told id reach early twenties.. im nearly 27.. its my mission to prove them wrong.. and i am

i honestly believe that your state of mind is 50% of your health.. dont let the negatives in life hold you back.. and if they do.. tell your GP, they are fully understanding and always willing to help

take care

tim x

nobodys child

Posts: 8
From: Darlington
Registered: 13-Nov-2006

Re: Arrghhh! Im sick of feeling like this

Posted: 30-Nov-2006 20:01

Reply

When I'm feeling low because of my CF, and there has been a lot of times as I'm 46, I say to myself "Don't think of what you can't do, think of what you CAN do". Try not to beat yourself up about your CF but try and see the positive things you can do, like see, hear, talk, I am sure you can think of more.

I had to give up work 2 years ago and thought my world would end but slowly I have learnt to do things that don't need physical energy or that will tire me (usually things sitting down, like now, chatting to people in the same boat)and sometimes doing things that I never used to have time to do when I worked.

I don't always feel like this but my good days are far outweighing my bad days since I started thinking positive. Hope this helps.

-x-SaRaH-x-

Posts: 37
From: Northampton
Registered: 29-Nov-2006

Re: Arrghhh! Im sick of feeling like this

Posted: 01-Dec-2006 18:17

Reply

Thanks everyone! I really do appreicate you all replying so quickly but I just ... I don't know, I know I should think positive, and most of the time I am a generally happy smiley person but then I suddenly think 'No, I've got CF' and I feel crap again. I just feel so jealous. To me, life is so precous, and I am absolutely petrified of death - absolutely petrified! And I don't ever wanna die

I know that is ridiculous, b/c obviously knowbody can avoid that, but atleast if I didn't have CF I would only worry about it as much as regular people. Does that make sense? I want to live way into my 60's but the chances are extremly slim

ros

Posts: 31
From: Cambridge
Registered: 06-Nov-2006

Re: Arrghhh! Im sick of feeling like this

Posted: 01-Dec-2006 18:36

Reply

I know just how you feel sweetheart. I try and remain positive and upbeat but then I see my friends geting married, having kids doing all the things everyone else takes forgranted but that I know it'll be a struggle for me to have, and yes I feel totally crap and can't be bothered to try and force myself to be cheerful and go out and live my life. Just remember we all feel like this at times and it is only natural considering all the sh*t we have to put up with. I sometimes find that it actually does me good to write it all down, every little annoying thing that gets me down and then tear it up into little pieces! Also lots of choclate and howling very loudly at the moon, sometimes helps too...

I know its tough and cr*p, but there are so many things that we can do that it would be a shame to waste time being miserable.

Huge hugs to you

loopylou

Posts: 90
From: wales
Registered: 06-Nov-2006

Re: Arrghhh! Im sick of feeling like this

Posted: 01-Dec-2006 18:36

Reply

HI SARAH MY BOYFRIEND WHO HAS CF IS 37 EVEN THOUGH HE HAS CF HE JUST LIVES LIFE HAS NORMALLY HAS POSS HAS I SHOULD IMAGINE MOST OTHER CF SUFFERS DO SARAH YOUR ONLY 16 PLEASE DONT LET IT RULE YOUR LIFE THINK POSITIVE AND LIVE LIFE TO THE FULL I KNOW IT CANT BE EASY SOMTIMES WHEN YOU FEEL DOWN BUT ALWAYS THINK POSITIVE I SEE MY BOYFRIEND HAVE HIS DOWN DAYS BECAUSE OF HIS CF BUT HE DOESNT LET IT GET HIM DOWN TRY AND GET YOUR SELF A HOBBY IF YOU ALREDY DONT HAVE ONE TO TAKE YOUR MIND OF THINGS CARL DOES ALOT OF POWER KITETING IT GETS HIM OUT AND TAKES HIS MIND OF THINGS NEVER MIND SARAH ITS CHRISTMAS SOON THATS SOMTHING TO LOOK FORWARD TO ALL THE BEST TAKE CARE AND KEEP YOUR CHIN UP LOVE LOUISEXXX

Shortty 01

Posts: 8
From: London
Registered: 12-Nov-2006

Re: Arrghhh! Im sick of feeling like this

Posted: 01-Dec-2006 18:55

Reply

Hi mate.

The thing to focus on here is that the AVERAGE life expectancy is 31. We know there are kids who do not survive past 4-8 yrs but this means that for everyone of them there is now someone who has made it to 54-58 years old.

You are not going to get to 31 and give up the ghost and what you do with your life now may well ensure you are one of the lucky ones who live to get in to theis sixties.

I am 35 and have no plans to miss the World Cup in 2038 as we may have a good team by then!!!

Jason.

pinkgirl

Posts: 77
From: Ireland
Registered: 06-Nov-2006

Re: Arrghhh! Im sick of feeling like this

Posted: 01-Dec-2006 19:10

Reply

I used to feel like that when I saw CF portrayed in the media, but keep in mind that media will always exaggerate and sensationalise things. It makes a good story. Sure people may die before they reach 31, but many live long after that. As far as I know 31 is the median age and not the average. (correct me if i'm wrong on that though

)

I guess we all get moments when we think like this. If its any consolation at all, you're not alone! x