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Feeling Low

AlexisWillow

AlexisWillow

Active member
Joined
Jan 6, 2015
Messages
30
Location
Cheshire
Today is the worst I've been in a while. I woke up and everything was fine, but then my chest pains started again. It's getting harder and harder to breathe, and I feel like my life has no purpose anymore.

If I do have Cystic Fibrosis, I'm not going to be alive long anyway, since I've had no treatment for all these years.

I'm SO ANGRY at my mum for not getting me checked out. I hate her for telling me these chest infections were nothing serious. Then she find out recently that my chances of CF extremely high and says "Oh yeah I did actually notice the symptoms."

I feel the urge so bad. It's been over three months, I thought I was okay. I was happy, I was living my own life. Any time she contacts me or I find out about how bad my lungs are I go back to square one. I hate her but I love her, she's my mum...Am I a horrible person for hating my own mum? Even after what she did to me?

It's so hard, I'm not coping well at all. I want to cry but the tears just wont come. I'll try to fight these urges, but I'm not sure how long I can hold off for.

I hope this feeling passes. Might need to find things to do to take my mind off it.
 
V

volnash

Well-known member
Joined
Oct 16, 2014
Messages
566
Just in to say im sorry for your situation, which i can not understand but what i can only imagine is how tough it must be for you.

Have you considered a lung transplant or is it too late for that? or not a chance to get it done? how old are you now if i may ask, and how long have you gone undiagnosed?

Id say try to distract yourself, and if the doctor gives you bad news then try to keep your mind occupied, if indeed you have a short life expectancy the only adwice i can really give you is to make the best out of the remaining time you have, even though this must be hard to hear.

Im genuinely sorry for your situation, and i am hopeful that there is a chance for you to atleast live as long as possible, if you have CF and that your quality of life will be good.

On another note, if you are not sure whether or not you have it, do not worry before you have been checked completely by a doctor.
 
AlexisWillow

AlexisWillow

Active member
Joined
Jan 6, 2015
Messages
30
Location
Cheshire
I've been told a lung transplant is probably needed in the near future, they're deteriorating a lot quicker than I thought they would. I'm 19 now, been showing symptoms since I was a baby but I'd never heard of CF until I met my fiance's friend who has it. I was told I had something as a kid which started with muco, which I think may have been Mucoviscidosis, another name for CF. But she refused treatment, saying I just had "the flu" or a "cold".

They said if I test positive for it once more, it's a definite yes. My salt content in my sweat has always been abnormally high, so I'm bracing myself for the absolute worse.

Thank you so much for your reply.

I'm sorry to be so depressing, I feel horrible when this really isn't a big problem compared to what other people go through.
 
T

Topcat

Guest
I'm so sorry to read this :hug:
My son has CF, and I use the CFTrust forum for advice and information Cystic Fibrosis Trust
There are some amazing people on there (if you haven't been already) who will be able to help you out with any questions or concerns.
If you do have CF, there are some treatments now for certain mutations which alleviate symptoms. If your mutation is not one of those, or it turns out to be another lung condition, with the right treatment starting (at last) things may improve to get your health back on track somewhat.
When are you going to know for sure? Are you seeing a specialist?
Xxx
 
V

volnash

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Joined
Oct 16, 2014
Messages
566
Dont apologise, this is not a small problem at all and if true has serious impact on your life, and never compare yourself to others we all face hardships and all are equally worthy of help.

Just wanted to say that it's natural for you to direct your anger towards family, when you feel like you have been dealt a bad hand in life, this is understandable but mothers tend to fear the worst, yet deny that anything bad is actually going on with their child.

Take care of yourself, and if you need to talk privately about whatever then you can pm me.

Until then let's await the final results before you take any further steps, i really wish you the best with this.
 
AlexisWillow

AlexisWillow

Active member
Joined
Jan 6, 2015
Messages
30
Location
Cheshire
@TopCat I've been asked to come back in March, seems like such a long wait. My doctors haven't been helpful so I'm hoping speaking to the specialist in March will help a lot more. I just wish this had all been done sooner. I can't stop crying over how little my mum must care to not get this checked out, despite me showing all of these symptoms when I was younger too. She couldn't care about me if she does this, there's no way a caring and loving parent would let their child do this alone. :low:

I'll definitely start looking into the forums, they sound really helpful, thank you so much! I hope my health will be okay, I'm scared that due to lack of treatment, that I won't benefit but I'm just hoping that I'm wrong about that. Thank you for your reply :hug1: xxx

@volnash Thank you so much, it's so nice to have support on here that I never got before. I do feel better now, thank you :hug1:
 
T

Topcat

Guest
:hug:
I think sometimes, as a parent, fear switches to denial and is stubborn.
It's maybe because you love your child that you just don't want to accept there's something possibly serious wrong. But, yes, it's a f**ked up way of dealing (or not dealing) with things.
I have had real trouble dealing with my son's daily care (he's 4) and the whole thing has affected me quite badly. There's a lot of guilt.

I would definitely go on the cf forum and ask for advice in speeding things up. You should find other people who are under the same specialist centre you are going to, who know the doctors and the system and they can advise better than me. I don't know much about late diagnosis (I know there are some adults on there who were diagnosed late) as my boy's was picked up at newborn screening.
I hope things get moving for you soon and you get the answers you need. Take care
Xxxx
 
AlexisWillow

AlexisWillow

Active member
Joined
Jan 6, 2015
Messages
30
Location
Cheshire
Even now though, she's still saying things like my depression is all an act and things like that. I feel that maybe cutting contact with my family might be the best option...but I feel like I'd be a horrible person for doing so. The times I've ended up in hospital on oxygen support and an IV drip, she never even came to see me, not once. That still makes me cry my eyes out. It was when I needed her most :low:

I'm going to check out the forum now, thanks for that!
 
SomersetScorpio

SomersetScorpio

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Joined
Aug 17, 2012
Messages
13,529
Location
The West Country
Oh, i'm reading this and just want to give you a big hug.:hug1:

I can't say i'm very knowledgeable about CF, but it must be extremely difficult to cope with and the talk of a possible lung transplant can't exactly be filling you with joy. :sorry:
Also, i'm really upset on your behalf at the way your mother has been with you.

I always find it incredibly touchy when I feel anger towards my parents.
I think perhaps it's not just me who feels a sense of guilt or disloyalty whenever I feel resentful towards my Mum.
But I think you need to do what's right for you, in terms of distancing yourself or not.
If her actions are upsetting to you and you don't think a) you can talk to her and b) she wouldn't change anyway, then perhaps accepting that might ultimately help you make the decision to seek support elsewhere.

Also, don't apologise for being depressing. You aren't being depressing and even if you were, this is a mental health support forum - you're in the right place. ;)
 
AlexisWillow

AlexisWillow

Active member
Joined
Jan 6, 2015
Messages
30
Location
Cheshire
Thank you so much for your kind words, Somerset. That was so nice of you. :) :hug1:

I really appreciate everyone's kind words and advice, it's made me feel so much better. You're all so amazing, thank you all, sincerely. I'm already feeling so at home here, everyone's been fantastic! :hug1:
 
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