i feel so alone

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hazer
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 8/2/2008 9:23 PM (GMT -7)   
im finding it so hard to cope i need some help,nobody around here understands whats going on. i think im on the furge of a brake down. what will i do?gypsy is well takin care of but im in depression and nobody nows im always the 1 to be bubbley(but its a frount) if i start talkin about her condition,i think people r just thinking i am just luckin 4 pity cause she looks so normal.i have no 1 to talk 2 in this backwards town.if i keep feelin this way how am i going to be any help to her when she needs it.the way i look at it,i need to be strong if shes ever going to be.

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/3/2008 12:44 PM (GMT -7)   
Hazer, my heart goes out too you, it really does.

I suffer with clinical depression along with CF, and get the same feeling of thinking everyone must think I'm seeking pity. Yesterday, I had yet another panic attack, when my sister-in-law joked that I must hate her, as I haven't been there in a while. I nearly burst into tears right there and then. She doesn't understand how things feel, she doesn't understand anything with her normal health and her normal job, and her normal life.

It's hard to get up in a morning and plant that smile firmly on your face, without sinking back into bed remembering how hard things are right now, and also how much you just don't want too deal with it today.

My advice is too speak to your GP, or even gypsy's CF nurse (obviously when gypsy isn't about). Mention that you are finding it difficult. There is a lot of support for CF mum's, and they will understand. Another thing I suggest is, if you haven't already, look at www.cftrust.org.uk. They are the people who run the CF centers in UK and Ireland, and they have a seperate forum, just for parents of little people with CF. They may also be able too advise you of help the have had, and how too go about getting it.

There is no shame in how you are feeling right now and you aren't letting gypsy down, as it's hard being a parent, let alone one of a child with an illness. At least your there and not running away from her, like a lot of parents do (my dad for one).

I am of course here, to give any support you may need. If you just need too vent, talk, anything. I'll be here to listen/read.

Normal looking, is one of the best, but most annoying features of CF. I once had someone stood behind me, say I must only be on crutches to claim benefits like lots of other young people are these days, because I looked fine.

It took all my effort not too turn round and yell at her. The second on the list-is looking young for your age. I still cannot pass as being over 16, at aged 22, and know a lot of other people with CF like this!!!

I hope sharing these little stories of mine, are showing you that you are not alone, and that you can get through all the narrow minded people out there.
You do just learn too bite your tongue (very hard!) and ignore it.

*huge hugs!*
Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


hazer
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 8/6/2008 1:53 AM (GMT -7)   
Thank you so much 4 that xx. i know. i walk down the street and gypsy will start coughing and people will stare at me and say things like you need to bring that child to the doctuir i used to answer them back but now i don't feel theres any point. I dont know about you,but do you go on ups and downs cause i'm constantly like that. One minute i'm happy the next i'm in depression. but 1 thing i have to say when i am depressed the only one who can bring me out of it is gypsy. she's so funny sometimes. if i feel sad at night time i go into her room and watch her sleep for a while it makes me feel better. I'm a single mother and i am scared to tell anyone the way i feel cause im scared people will start trying to judge my parenting skills. When gypsy was 1 years old i had to bring her to mullingar hospital i was 18,me and gypsy where already after spending 6 months in 1 of the main childrens hospitals,2 week in,2 weeks out.that sort of way for the year. i bought her in to mullingar and a old hag of a nurse came in and asked me did i know what my options where? she had never meet me before in her life and she had the gaul to come in to the room and ask me did i want to give up my baby.I couldnt believe it after all we had been through already.its reasons like that i feel alone . I wonder why cf makes you look younger than you are? I dont realy know cause, this might sound stupid, but i've never meet an adult (well i dont think i have) with cf.your the first adult i ever even talked to with it. serously you should see where i live theres 2 shops 3 pubs and a chinise :) thanks for this chat. as you can tell im not the best at writing on this computer ,but hopefully you can figure out what i'm tryin to say. just gettin the little 1 out of bed now, shes lazy is'nt she :) oh well its the holidays so i dont mind. Hope to chat to you soon, Hazel

JessMarie
New Member


Date Joined Jul 2008
Total Posts : 14
   Posted 8/6/2008 8:06 AM (GMT -7)   
Hi, I am a 23 year old female living with cystic fibrosis. I have suffered from depression but I realized that things can be much worse then they really are. I just found out that I am growing two infections in my lungs. I have to do my treatments twice a day and take two different antibiotics. Then I found all this out I slipped into a depression. With my family and friends support they have helped me get through all of this. They made me realize that this is just a bump in the road that I have to get over and things will be much better. So I guess what I'm trying to say is you just need to be there for you daughter and help her with her everyday life.
 
Jessie
 
 P.S. You don't need to explain to anyone why she is coughing all of the time and about her Cystic Fibrosis. If they don't understand and mind there own business then that is there problem, not yours.

hazer
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 8/7/2008 8:07 AM (GMT -7)   
hi jessy thanks for the comment but 1 thing i want to know,you are 23 and gypsy is on the same medication as you and shes only 6 does that mean that she is really sick with it? (Darkies gem can u tell me )

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/7/2008 10:34 PM (GMT -7)   
Hello hazer,
 
People with CF are usually on the same or similar base medications throughout life. Things will get added and removed and doses will be changed as gypsy grows. I wouldn't say that the amount of medication or even the type of medication is a big significance to how Gypsy is doing.
Lungfunction tests, height and weight and chest x-rays are the only real way too tell. But, even then, you could have a high lungfunction, but feel awful, or a low lung function and feel as if you could take on the world. Same for any of the tests really. CF is really unpredictable.
 
 
Not sure why we look younger than we are, there's no actual research done, it's just something we noticed. I speak to people online and have a few hospital friends my age, and we all look young for our ages.
 
I have heard from others about how they were given the same options as you, and told it would be better if they had their child adopted out. It makes no sense too me, as if they don't think you, the mother, who will have the closest bond and love too this child, would be able too care for them, then why suggest passing them onto someone else. Crazyness!
 
The problem we had, was our Primary School Headteacher, wasn't going to allow us too start school there, and said we had to go too a special school. Thankfully my mum stuck this one out, there is no way I'd have got the grades I did get if I'd done what the head said.
 
I have bad mood swings too, I do my best to cover up though. There are 2 people who can see through any false smiles or barriers I put up, and they are my CF nurse and Psychiatrist. It's good that someone can understand, but I get mad that I can't keep any sadness too myself.
 
Haha, I wish I could still be in bed, waking up at this time is just wrong!
 
Have physio today, which is why I'm up so early. Medicar comes at 8! Having a low day myself today, hopefully physios are in a nice mood!
 
 
 
 
 


Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus

Post Edited (Darkies Gem) : 8/8/2008 7:02:11 AM (GMT-6)


hazer
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 8/8/2008 7:08 AM (GMT -7)   
Keep the chin up wont you ! I had that with gypsy aswell they wouldnt let her into a playschool, i gave out stink so she rang me back a few days later and said that gypsy could share a day with a boy with downsindrom(spelt that wrong) as if she was doing us a favour . i told her to shove it up her arse :) and found gypsy another playschool.im not going to let any1 with that sort of backwards mind try and teach my daughter. but anyway on a lighter note i hope something realy funny happens with u today to make u feel better. heres a joke i thought it was funny but you have to know i've a bit of a weird sence of humour, here goes : what do you call a spanish footballer with no legs ? grasseass .silly is'nt it .chat ya later

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/8/2008 12:19 PM (GMT -7)   
Haha, that was good, very silly, but just had me giggling.......Which then turned into a good chest physio session, hurrah!

Gym was ok, physios weren't too evil and even made me 2 cups of tea!!!!!!!! They are good to me, I just know people find it difficult too see when I'm struggling, and know my physios have the same problem. Which is why I get panicky when I'm not feeling my best I guess. Luckily, when I shouted holy cow, this is too fast, I don't like it it hurts! They slowed the treadmill down and we moved onto something else.
 
I'm annoyed with myself, well, more at my stupid muscles, but I guess they will sort themselves out soon, following previous patterns. I just get impatient is all. This morning I was up at 4:30, so was in a pretty grouchy mood, I'm feeling more cheerful now, though have managed to catch a virus at some point during the day. Hopefully, quick starting, will mean it's just as quick too go away again.

Currently chilling out with tea, cake and Eastenders. It's good, and relaxing:)

Oh, and weird sense of humour this end too hehe!

Gem x


Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus

Post Edited (Darkies Gem) : 8/8/2008 1:23:37 PM (GMT-6)


hazer
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 8/8/2008 2:45 PM (GMT -7)   
Eastenders, cornation street and emmerdale im hooked cause thats when i do gypsys nebs and accapella. such a battle :) shes gas the hole time im watchin it im counting then 3 huffs and on again its kind ov funny the way we go on. hope your alright i'll chat you tomorrow if thats ok i've only been chattin u a few days but i'm thinkin of you, remember that xxx

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/9/2008 1:53 AM (GMT -7)   
Haha, that's the best thing too do though, you get into a routine that way. Hope she has one of the new, quieter nebs.

I keep meaning too try out the accapella,as it's meant too be excellant. Instead I use a PEP. It's so good that you don't have too do postural drainage and percussion and percussion-that was the biggest nightmare ever when we were kids.

I'm doing nothing today, how about you? I've decided I'm just gonna do some more of this relaxing stuff I think, it's so nice after a very busy week!

Thinking of you too!
xxx
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


hazer
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 8/9/2008 8:58 AM (GMT -7)   
do you realy want to know sad i realy am :) me and my boyfriend watched the first two movies of "the lord of the rings " and i stopped through the 3rd 1. I think my brain has serously melted a bit :) those movies last like 3 hours each movie. did you ever watch them? i dont think they are as good as people make them out. you should relax as often as you get the chance but i dont advice that much tv i think my brain got a bit to relaxed this morning .

hazer
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 8/9/2008 8:59 AM (GMT -7)   
forgot to ask did you get your tatoo done yet ?

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/9/2008 9:31 AM (GMT -7)   
Nope, not yet lol. Migth be a while yet, as saving up for hols at end of Sept:D


I've ended up reading lots today. I'm annoyed with my laptop, as it won't let me play Sims 2 in peace. Guess it's not too bad though, as whenever it crashes I come online for a bit instead. Still, really irritating. Gonna have too do a spring clean on my comp again!
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


hazer
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 8/9/2008 10:28 AM (GMT -7)   
jesus i havent a clue about computers just gettin the hang of this, a bit. where are you planing to go on holidays ? i probably already told you but were heading to disney world in september i cant wait. i think i'm more excited than gypsy is. have it all paid for now so i can relax. i'm not looking forward to the flight though its going to take about 14 hours , but it will be worth it . can't wait

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 8/9/2008 10:50 AM (GMT -7)   
Oh yes, did you get insurance sorted in the end?
I went to Disney world when I was about 4, I still vaguely remember bits, like mickeys house, and my autograph book and stuff. Remember much more about Greece, when I was nearly 7. You're probably taking Gypsy at the right age, an age where she won't be too embarrased too go upto the charcters, and is still young enough to enjoy it, but old enough to remember it:)
Don't envy you with the flight, 11 hours too Calafornia was more than enough for me. Don't forget a letter from the hospital, saying what medication gypsy is on, if she has a Port-a-cath or Picc line, if she needs too take creon or any other meds in hand held luggage, if you have too take her nebuliser etc.
It just makes getting on a plane much easier and less embarrasing if you have a doctors letter with you.

We are going too Cleethropes for 4 nights, with 2 friends, my hubbies Auntie and cousin. Should be awsome, I can't wait!

Haha, your getting old when you are just as happy going to the seaside an hour and a half away, than you are going abroad.
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


purpleribbonmom
New Member


Date Joined Aug 2008
Total Posts : 8
   Posted 8/9/2008 9:14 PM (GMT -7)   
I know what you mean about the depression thing. My daughter is almost 1 yo, she was dx'd with CF @ 5weeks. I was very depressed for a few months thinking about the "what ifs" and knowing that we have a long road ahead of us. Karrie looks healthy too, and is doing well. But, it still gets to me when I think of how we're going to deal with the future, sometimes if I think about it too hard, it makes me cry. So, I try to take one day at a time. Its weird, when we're in public and people see me "drugging" my kid before she can eat. Here in the USA, CF seems to be a private disease, there's not really many parent support groups.
But, we moms are not alone! Hang in there!!

hazer
Regular Member


Date Joined Jul 2008
Total Posts : 33
   Posted 8/12/2008 2:58 AM (GMT -7)   
I keep my fingers crossed for a cure . hopefully a miracle will come soon . untill that day comes we just have to try and be as strong for our kids as we can . i wish it was me that got it and not her thats sounds weird but i would take on that desiese 10 times over if i new that she would lead a normal healty life .unfortunitly lifes hard . i think it takes a stronger person to wake up with a smile on there face and be thankfull for every day we have with them so thats what i'm going to try and do. have to go have a fun filled day planed for gypsy thats my daughter :) shes 6 today .you hang in there to and if you ever need to get things off your chest youve got a friend here xxx
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