Starting to give up:(

Hello everyone and hope your asthma is treating you well and you're in a stable condition at the moment.

However im on the verge of giving up as im not getting better and now the doctors have told me they have nothing else they can do and im just going to live with it, well its fine for you to give up but i have to keep going. But i dont want to wake up everday having to have a nebuliser and not being able to breathe theres no quality of life in that and not being able to go to school or socialize with my friends because im stuck in bed all day everyday struggling to breathe.

And my life has changed completely i just wasnt who i used to be, I didnt use to look at myself in the mirror and breakdown because i look like a chipmunk (thanks pred), i didnt use to refuse to eat meals or even refuse mc donalds like i do now. I just wish i could be back to my old self from two years ago where i was happy and not depressed because of my medical condition.

Crying over asthma is probably pathetic in your eyes but its the only way i can get my true feelings out without upsetting my family,

I feel so alone and just need some support from who understands what im going through.

Sorry for this rant

Bryony (16)

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Oh hun:-| i know how you feel i am 32 and have days like your having and its not nice. Have you tried getting a referral to a hospital or nurse specialist. I have always found this helpful. Physio has helped me by learning some breathing exercises and getting my family to help by patting my back on a special way the phsyio showed them to loosen the mucous.

Keep going take care

Lou

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Hello, yes I'm under two consultants?, one near where I live and the other 2 hours away, I've been through physio but they just said that it wouldn't help me as I'm defined as brittle asthma and it's just wasting my time.

Thanks for the support though

Bryony

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Hi Bryony!

So sorry that u feel so terrible ? but keep up and try to get to the end of things. U will get there dont worry maybe if u could be seen at the Brompton they could sort u out? Try asking for a referral but if a dr saying that theres nothing they can do try to find a dr who can do something about it! Same thing happened to me and just about to get to bottom of things even though it took years. I am in first year uni only just finished school but maybe try to go only for the most important lessons thats what i do and try eating lots of protein as u get energy from that! I find nuts are great! With regards to eating do u feel sick? I used to have some problems with that so we changed the time of pred and we added omeprazole but i can refuse from time to time absolutely everything too. And the chipmunk well i just dont care how i look and should go once ur off the pred for a while

Hope this helps! Hope that u get better!

Yas (19)

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Guys and St Thomas have a great team of professors consultants nurse specialists and Physio who haven't given up on my brittle asthma that is compounded by a rare genetic disorder. In fact they will try everything they can to improve things for me. Got phsyio this afternoon and clinic next week. Keep smiling! One of my friends calls me moonbeam cause of the pred face.:-).

Take care

Lou

ps If you can't eat nuts seeds are great. Try and get some fruity 9 bars they are yummy.

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Bryony, I am so sorry you are feeling so low. I admire you trying to put on a brave face for your family, but I have to say that as a mother of a sixteen year-old girl, I would really hope that she would come to me if she was so low. to share how she was feeling and to have a damn good cry with me, if thats what she was needing. So that she didn't feel so alone, as you are expressing. That would also anyway make me feel better about her pain than if she was refusing food and unable to share her feelings with me, or anyone, that would make me feel impotent and redundant.

Its hard if you are confined to bed not to focus not the reason why (I speak as a migraine veteran), but good to try to practice some of the well-known methods to keep depression at bay: which is absolutely to feel your feelings of sadness and loss, but not to dwell on them or feed them. Try keeping a gratitude diary, choosing three things each day that you are grateful for or which make you happy to write about, spend quality time with your family. Don't isolate yourself, join online communities, keep in touch with friends by phone, get them to visit you, visit websites like Action for Happiness. If you are not completely stuck in bed, try a little walk each day also. Maybe read biographies of inspiring people and their health struggles, such as Frieda kahlo. maybe write a blog.

And rant away here, we all understand. I am finding the changes in my quality of life difficult to accept at the moment, so am fighting not to let rumination overwhelm me. Above all, do not isolate yourself. You do sound resilient so I hope your natural verve and curiosity bounce back soon.

""A sheltered life can be a daring life as well. For all serious daring starts from within.""

- Eudora Welty, One Writer’s Beginnings

Big hug, we are all here for you.

xx

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Thank you for the replies everyone and the support. I went to camhs yesterday and he noticed a massive change in me which has put a downer on me evenmore as 4 weeks ago he was ready to discharge me but then things have changed so suddenly.

Yas- Thank you for the reply and i shall suggest that before i have to be transferred onto the adults because our local hospital is not as big and helpful as someothers which actually specialist in chronic asthma and im taking each day as it comes even though its a big struggle, most days i will just lounge around in my pjamas because i dont have the motivation to actually participate in life and isolate myself to others. I went to school on Monday for 2 hours and then the next day i was throwing up and had a horrible stomach ache (The joys of having a rubbish immune system). I wish i had that view on the chipmunk face but it just gets me down :(. Thank you again and i hope you're keeping well.

lou lou- Thank you for the suggestion i shall look into it more :). I hope you're keeping well.

Winnie- Hello and thats exactly what the man at camhs suggested yesterday but i dont have the courage to perform that action because to be honest im not really that close to my mum and im close to my dad but i couldnt tell him how emotional i am feeling and how down i am because he cant even cope when im in hospital and becomes stressy and upset too. I try to force my mind to the positive but i just cant seem to succeed that action yet and thank you for the suggestions i shall consider them. And yes to be honest i want to go back to 5 years ago when i was beginning the xolair trail which impacted such a success on my life and gave it much more quality. I hope you're keeping well and thank you.

Thank you everyone means a lot x