Hi everyone out there , I. Looking for some ideas I have very severe brittle asthma which has caused me to become registered disabled . I did nurse and my job was my world and when I managed to get other employment after that it was always with people but now my treatment for mt asthma had left me with no immune system so I have treatment fit that amongst other P problems ( which I won't bore you with ) . But as many asthmatic know , esp brittle , you wake up each morning never knowing what the day has in store for you . I've done all the crafty things abd noe I feel I actually want to make something positive out of my condition , I dint want a problem page or blog because I just don't think that's healthy ( for me anyway ) I want to do something that will take away my focus of my asthma but in the mean time hep King other people with lonfg teem and sometimes life threatening condtions a so has anyone out there got Ny brain waves or ideas , I'm not very mobile but would say I'm fairly con pita t o. The computer / lap top . I've called my project




- mad for short .

Thanks in advance xxxx

6 Replies

  • I so agree. I'm very brittle too and like you have had to stop clinically nursing and it still hurts! Not sure I have any advice about what you can do just wanted to empathize

  • Thank you that means a lot . I really don't want anything that could end up being e problem page or comparison of symptoms as I think there is already the option for this on here and from might personal point of view I don't want to dwell on the negatives and bad experiences ( and I had a feW) I want to do actually produce something constructive , - being in hospital with asthma can be a very isolating and frightening time - out hosptail is all,seperatly,rooms so it gets VERY LONLY , IM TRYINF TO THINK OF SOMETHING CONTRUCTIVE THAT WHEN TIMES ARE BAD , YOUR STRESSED AMD YOU NEED TO FOCUS. ON THER BREATHING YOU CAN PICK IT UP AMD IT WILL HELP YOU FOUCS A D ALSO REMIND YOU YOU ARE NOT ALONE .

  • I'm also following down your path folks, so it appears, but fighting till the end.

    Iv often wondered what I could do to help others.

    I was thinking of a monthly support group, with specialist speakers with support along side I.e Asthma nurses, yoga support, as I believe this helps with breathing etc

    As I know there's many folk out there needing information to help them or family members.

    Not sure what you feel about this?

  • Thanks Jokir , , we are very well blesses in support groups especially as we have a pulmonary rehab group which is linked with breath easy and there is also the NAC - but I. Really looking for a idea that's touchable , feal able , tangible as it can be such a LONLY and isolation g place .

    When I'm in hospital and it's all single rooms I need something that will help me focus on my breathing. Control , like a little buddy , a shape to hold or an app on a phone , or mobile device .

    I ove the idea of the yoga though amd our recent course. Of PR reall helped BECUASE you could excersise at the pace of others in the same boat.

    My major problem is my asthma is so intertwined with many other health aspects that I find I quite often get judged and this has completely diminished my self confidance .

  • Hi Mad! I think it's amazing you want to make a difference! Me too, but I'm probably more mobile than you, so it sounds like. Since you are a nurse, I'm sure you can help answer questions for others. Such as, why does asthma make me so hoarse, even when I can breathe fairly well, but still not my best. I lose my voice. I don't know why? Also, I will put in my thinking cap and try to come up with things you can do. For instance, I try to encourage folks a lot on my Facebook page who are sufferingwith any disease. I hope you enjoy this blog.

  • Thank you any ideas would be good , I did hear of a girl who made stars out of would and the y were hand size so that when some one was struggling they felt they were not alone and and had something to hold as you can't always have a nurse with you , the edges of the stars helped you remember that you breath in and out to a pattern . If I could meet this person I wyou D have the utmost required for her - but I don't want to copy her as that would be copyright and she deserves every bit of Christ for the fab idea. So I'm thinking perhaps on the lines of an app or mantra or something , , does this make sense

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