Just can't deal with this dreadful disease anymore!

I don't mean to come on here and moan but.....

Maddie, aged nearly 3, is the best she has EVER been since on maintenance pred. She has a quality of life for the first time since she was born! She can walk, laugh and play. It's amazing to see and brings tears to my eyes to see :-) Ok, she now has adrenal failure due to the high steroids, which obviously brings huge problems, but as far as her asthma goes, she can breathe :-)

Lottie, her elder sister, aged 5, has always had asthma too. However it ha always been alot miler than Maddie. Lottie has had the odd attack since a baby. She's on ventolin, serevent, montelukast and clenil. So alot less than her sister.

However she's now had 7 courses of pred since Christmas!! She's on a course of pred at the min, yet only finished the last about 2 wks ago!! Shes coughing and coughing! She tells me she's not got breath to eat or yawn!! Then she's ok, then she's not!! It's like a rollercoaster!!

I've always had Maddie to worry about. For 3 whole yrs, since she arrived, she's had breathing problems. Now she's kinda stabilised, lottie is now taking over!!!!

Why oh why oh why can't we have a break from asthma! :-( I can't remember a whole week without asthma dominating our lives! It's like a cloud that hovers over and takes their breath away!

Don't mean to moan, just had to get it out before I scream!! Why us?!

2 Replies

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  • Hi Emily35

    (((Hugs))) Am so glad Maddie is better and am so sorry Lottie is struggling, its so unfair isn't it? Watching them struggle you just want to take it all away. Today I spent half an hour on the phone today with the fantastic Asthma UK nurse (thankyou so much) discussing my 8yr old daughter, her treatment and her useless school and their lack of an Asthma Policy.

    I deal with my own britlle asthma, ICU admissions etc but when it comes to my child all my understanding goes out the window and I am a wreck!

    I hope Lottie feels better soon and Maddie keeps well and you, as a mum, look after yourself too.

    PS Your not moaning, your worrying, anyway even if you were moaning your entitled and thats why we are here.

  • Hi, please don't apologise - this is exactly where you can let off.....

    i really feel for you and I hope Lotties does improve over the next few weeks.

    after a good summer , my son's asthma has got a lot worse this last month and I have felt like you.

    Why can't we just have a normal and easy life.

    I hear other parents moaning about things that appear to me to be minor and I think if that's all you are worried about with your child - about the friends they have or their position in the class - you really have no idea of what there can be to get stressed about.

    I sometimes feel like we are living a parallel life compared to other families when asthma is bad - it affects everything.

    Anyway just wanted to say i hope you don't feel alone - I often feel the same.

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