Message Boards for the CF Trust

Replies: 13 Pages: 1

Tina

Posts: 9
From: Carlisle
Registered: 16-Nov-2006

Scared of future
Posted: 16-Nov-2006 23:54

Reply

Hi im new to the site and have a few worries so if you have any advice id really appreciate it.

Im 21 and have been with my boyfriend who has cf for a year and a bit. I love him very much and we often have the discussion of what happens when he gets to the age of what i call retirement of life. But at the moment it is really hard to think of a life where he no longer exists. I can't bear the thought of losing him in a few years i just wish i had the money to fund the research to find a cure before that time arrives it's so unfair i feel useless not being able to do anything that can help. Is there anything i can do to stop worrying or help if you know anything please let me know. Thanks.

Tina

young mummy1

Posts: 39
From: Burnley
Registered: 05-Nov-2006

Re: Scared of future
Posted: 17-Nov-2006 00:57

Reply

hi Tina,
I don't understand why your worried, you have so much time together yet your only 21 and its lovely that you can see yourself together at that age is your boyfriend worried like you? Don't spend your life worrying my little boy has cf and i wonder in to the future like you but sometimes its best to take it one step at a time and enjoy what you've got now and not what you might not have in the future.

hope this helps love Lisa x

Tina

Posts: 9
From: Carlisle
Registered: 16-Nov-2006

Re: Scared of future
Posted: 17-Nov-2006 10:41

Reply

Thanks for the lovely message back. He doesn't worry about it and normally neither do i. I recently lost three friends to were suicides and one was a blood clot in the lungs and it just hit me and i thought oh my god in ten years i might not have my boyfriend and a year flies by especially as we are both at uni but thanks for the kind positive words it put a smile on my face. I hope your little boy is ok and if he is anything like my boyfriend he'll be enthusiastic and fulfil as many of his dreams possible take care

Tina

AmyS

Posts: 6
From: Suffolk
Registered: 15-Nov-2006

Re: Scared of future
Posted: 17-Nov-2006 10:41

Reply

Hi Tina,

Welcome!
I also have a partner wcf. I think it's completely normal to have those feelings. I often worry about the future and am scared of a life without my partner. I always try to remind myself to enjoy my life with him now rather than spend my days worrying about what might be. It is difficult to do at times!

I count myself lucky to have my partner as we have a great relationship and I love him loads- I want to enjoy that rather than focus on the future and what course it might take.

Sorry I have waffled on and not been much help. But just want you to know your not alone!!

Amy x

Tina

Posts: 9
From: Carlisle
Registered: 16-Nov-2006

Re: Scared of future
Posted: 17-Nov-2006 10:45

Reply

Thanks Amy.

Ilove my boyfriend to bits too we have so much fun. Its hard sometimes when you get on a bit of a low and no one else around that you talk to really understands. I know im not alone but seeing it in black and white makes me feel mush better cos then i know im not misunderstood.

Tina

Matthew

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

Re: Scared of future
Posted: 17-Nov-2006 15:14

Reply

Hi Tina
Im Matt 24 born with CF. As you may know the faulty gene that causes CF was identified in 1989. Since then I have taken part in many experiments and trials for different bits of medical kit and medicines. And there is a hell of a lot of work being done to improve treatment methods and there are some fantastic bits of equipment which makes the treatment of CF a lot easier.Every time I go for check ups the doctors or physio's throw bits of kit at me saying take this home and tell us what you think. The other thing is there is now a database that holds information on treatments for CF so a doctor in Canada can find out how doctors in London help treat xy and z. So the treatment and life expectency for people with CF is getting better and better and having been used as a human crah test dummy (Sorry about my humour) things are getting better and we WILL find a cure one day we're so close.
There are scientists working flat out on the gene therapy programme cos Ive met some of them.

I know it is difficult and sometimes CF does get worrying Im not ashamed to say I get worried but I now it sounds cliche but I just dont think about the negative.

Ive got my own house a full time job. Ive been working since I was 16 and have a boxer dog called Mutley and got my motorbike. I see CF as an extra in life its something that I was born with.

However I do understand that everyones cercumstances are different and I hope this info has helped reasure you that things are getting better for children and adults born with CF. Hope this helps
If you have any further questions just ask cos this is what these boards are for. And there is always some1 on here with an answer.
Take care and all the best
Matt

Tina

Posts: 9
From: Carlisle
Registered: 16-Nov-2006

Re: Scared of future
Posted: 18-Nov-2006 01:32

Reply

Thank you so much for the info. You seem to have done pretty well for your self which is good to hear

I just worry sometimes as i nearly lost him last year hes pretty bad with it for his age he only 19 and can bearly go out cos he tires so easily and losing 3 friends recently just hit home. Its so nice to know there are so many people who care Thank you

Matthew

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

Re: Scared of future
Posted: 18-Nov-2006 16:05

Reply

No problem Tina as I say I know everyone deals with things like CF in different ways. I hope that info helped. As I say there's always some1 on these boards with answers to any questions.
I hope your partner is keeping well and all the best ok.
Take Care
Matt

Kim (summerdays)

Posts: 301
From: south wales
Registered: 15-Nov-2006

Re: Scared of future
Posted: 18-Nov-2006 16:40

Reply

HI Tina
My name is kim im 38 and have CF, i've had a rocky life but i seem to keep bouncing back , i belive the mind plays a part in how we are with CF its a powerfull thing and our spirit to. i can totaly understand why you feel this way , we all do at times, i get really low some times and dont want to live , but hay we all get low days CF or not

what i want to say is nobody knows when your times up CF or not, take life and live it , enjoy what you have together now, yes its a worry, but new things are been brought out for us every week , things are looking up for CF and we are living longer now.

i hope ive helped you.

send him for faith healing, it makes you stronger, did with me,

kim xx

lol

Posts: 1
From: south east
Registered: 23-Nov-2006

Re: Scared of future
Posted: 23-Nov-2006 22:30

Reply

Mr OK for 25 years or Mr. Right for 5 to 15 years, that's the way I look at things hun and it's helped me. I thimk we all as partners will always go through short periods of getting scared about the future but try to put it to the back of your mind because when you're trying to hold back feelings of hurt or fear, you can also accidentally supres other things too such as love, warmth and affection. I fell into that trap once and started to distance myself from my partner without even realising it, all problems rectified now but if you keep thinking about it it wont do the relationship any favours in the end. You'll be ok, take care of yourself x

Tina

Posts: 9
From: Carlisle
Registered: 16-Nov-2006

Re: Scared of future
Posted: 24-Nov-2006 01:23

Reply

thanks i feel much better thinking biut things in perspective i love my other half more than anything and wouldnt swap him for the world Thank you all for your kind advice

Dawn

Posts: 29
From: Worcestershire
Registered: 06-Nov-2006

Re: Scared of future
Posted: 25-Nov-2006 22:51

Reply

Just being nosey and having a look on the other boards. Im a mum of 2 PWCF Kris 21 and Kayleigh 19. Im scared of the future. My daughter is talking about having a baby in 3 years. Im scared that if anything happened to her who would look after the baby/child (my grandchild) She is buying a house with her fella but he has his own business, he cant give up work as they have a mortgage. My daughter cant get life insurance, so if anything happened to her regarding her CF her fella would be left with a horrendous mortgage. My son Kris 21 works full time, but he does not look after himself as he should. He has not had his neb for months! (he has peudomonus) he rarely takes antibiotics and refuses to go to clinic more than once a year! Im sure he is shorteing his life just by doing what he is doing!

Tina

Posts: 9
From: Carlisle
Registered: 16-Nov-2006

Re: Scared of future
Posted: 27-Nov-2006 12:38

Reply

Thers a msg for you dawn on your msg board hope it makes u feel better xx

Bill H

Posts: 11
From: Scotland
Registered: 30-Nov-2006

Re: Scared of future
Posted: 01-Dec-2006 01:49

Reply

Hi

I agree with Amy.

None of us knows when our health will become more problematic, CF or no CF. Try to live for today. It's the only way even though it can be very difficult and depressing at times.

Keep visiting this forum and others like it. I'm sure it will help a little.