I don't want asthma to define me!

Hi,

I'm Sharnee 22 and a sufferer of chronic asthma as you all must know winter is HORRIBLE. I constantly have to battle loving Christmas and it's festivities but hating the weather it brings with it. I have always made sure to keep my asthma quiet because of the fear I will get the comment "I have asthma, I have had to have the brown one have you" YES! YES! YES! The brown inhaler is a thing long in the past. Today I had a breakdown when going for my monthly injection, where my nurse told me about this forum. I feel like giving up with all the medication and letting my asthma win because although as we know its not a physical disability I feel so disabled. Being 22 and not being about to walk up the stairs to work, step outside for too long or laugh with friends without having to reach for my Ventolin is restricting and upsetting. Having 2 hours a sleep a night because I wake up choking on my phlegm, or waking up shakey because of the amount of puffs I have used in the night. I feel drained, sad and defeated and very very low. I'm better than this and I am better than my asthma and I just want it to get better. Just seeing some of these post I am reminded I am not alone. Although I have been told I have got chronic asthma I have heard over the last 4 months "Brittle asthma" coming up alot and would like to know more because alot of the time I don't chronic asthma can cut it.

Sharnee

19 Replies

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  • Hey!

    Heck it's a physical disability. 'Physical disability' doesn't just mean 'wheelchair-bound' or 'crutches', it means anything which affects you physically.

    As for the 'brittle' thing, it kind of depends what type, if anyone has mentioned 'Type 1' or 'Type 2'. 'Type 1 Brittle Asthma' means you're on high doses of things or multiple drugs but your peak flow still goes up and down a lot every day (you might have head the term 'diurnal variation'; this just means how much your peak flow changes between the morning and the night). 'Type 2 Brittle Asthma' is where you might be on multiple drugs and high doses and your asthma is stable or controlled, but you frequently have severe or life-threatening attacks which shouldn't have happened (i.e. you weren't doing anything drastically different, and your asthma had seemed fine before you had the attack).

    What meds are you on? I'm guessing the injections are Xolair, or allergen immunotherapy?

  • Hi,

    Yes they have mentioned type 1 brittle asthma and what you have said has fitted me quiet well. As I am on a huge amount of medication and yesterday I was giving a peak flow of 220 and today I was 450! And yes the Xolair injections are what I am on at the moment although I was given them this week as planned as my inflammation test was too high!

    Thankyou for repling!!!

    Xxx

  • The nurses in the hospital mentioned Type 2 Brittle Asthma as a possible for me, so I'm going to check that at my 1 week check-up with the doc on Thursday, but it sounds like me recently.

    If you don't mind me asking, what else are you on besides the Xolair? :)

  • oh no! well i am hoping all my meds will stop that! & prednisolones 40mg, montelukast, symbicort, ventolin, ciclesidone, Cl1 & a new drug to help clear mucas off my chest but haven't learnt the name yet!

  • I haven't heard of Cl1 before? :P

  • its just calcium tablets, think its just to look after my bones whilst being on steriods for so long!

  • And btw it's alright, I'm happy to reply :) having asthma which is considered 'brittle' can be quite a lonely place!

  • Hi I am refusing to let it define me too. At the moment if I let it my asthma could be all encompassing

    making my life all about how I get better (still havent recovered from my first asthma attack nearly 3 ago). Yes I get feed up sleep has become something not to be taken for granted. A two in one inhalr And a chest xray today. More steriods too.

    Yes it really sucks at the moment. I know that it has taught me to be brave,assertive and made me take care of myself better. As a mum I put myself at the bottom but just because things arent being done in our house. Housework etc. My family can help and my teenager have been amazing looking after themselves. As a christian I turn too God for help and still have question of why. I have peace from God and his strength to get me through. Yes I have asthma but asthma doesnt have me! I am more than this I am me!

  • I want to feel the same way but I just have fallen into a bad time where I feel like my asthma has won. As a Chrisitan too I know I need to put more faith in God and pray more to talk to him

    thankyou so much for replying

    xx

  • Hi lovely lady I know its tough and I would normally be sinking with this challenge on my life. I have learnt so much in the last 3wks. Being stripped down as I have. Never could understand about having the Peace of God that passes understanding. That peace I have now. No I am not better infact if I am not better by thursday then he's going to consultant a respiratory doc. Had a chest xray today and now on combination inhaler too. Plus decreasing steriod dose and yes I am still waking

    up at night.

    For myself I know that my trial isnt over yet God got more for me to learn.

    For you I will pray for God's peace, you to know he is there listening to you. Jeremiah 29:11 always helps when times are tough. Google Laura story song blessing read the words and Listen to the song. Goodnight

  • Hi hun, first off sending u a big gentle hug, there's probably nothing I can say that will make u feel any better apart from the knowledge that ur not alone in what ur feeling right now, (currently going through a battle myself, been a month so far :-( ) the whole cycle of medication not sleeping, exhaustion and generally just fighting to breath is an frustrating depressing one, but I've been here before, and no doubt will be here again, I won't say it gets better, chronic illness rarely do, but there will be breaks from it, some only an hour without symptoms others maybe weeks ormonths wwithout major ones, anyway just wanted u to know ur not alone xx

  • Thankyou so much,

    I think your right I never knew about this forum before and after going to the doctors to talk about how I am feeling she put me straight on to anti depressents which isnt something I want and dont feel like I need. If anyone knows of support groups I could go to I would be so thankful as I do want to get back to my happy out going self and still deal with my asthma and I dont want to have tablets to do that.

    thankyou again

    xxx

  • I know that feeling of desperation. Through strange circumstances, I have found something that helps me a lot, and my intake of traditional meds has dropped to a small fraction of what it was: asthmavsteroids.blogspot.co...

  • I just read the blog post! OMG that's amazing if it has worked for you.

    I am allergic to aspirin so it isn't an option but I'm glad I know if I was to meet any other asthma sufferers.

  • Hi there,

    Another hug coming from here too;0) welcome to this great place where you will always find others to listen and who do understand the things you are going through. I hate being defined by my illness and it has made me a lot more insular when toms are not great. However I do make an effort to get out on my stronger days. With any illness it's hard for healthy people to understand how debilitating living with a long term condition is, and at 22 your spirit wants to be joining in with the normal things in life. We all respond differently to treatment, so what works for me may not necessarily work for you. Acupuncture for example gave me the worst asthma I have ever had to begin with then cleared it away for two years without an attack! Do you know what triggers your asthma at all? It could be a food allergy, such as dairy or something in your environment that make you worse? Once sensertised, things that would normally be fine, like flowers, can effect you. So ... I do hope that you find ways to relieve the worst bits. Coming here is a good start;0)

    Gino

  • I feel a tiny bit happier just coming on to my computer with all these replies and I am so thankful and it's nice to know that I am not alone. Although I love my family and friends they will never understand what I go through. I play it down a lot to them when having attacks so I don't scare them. Yes my triggers are cold or hot weather, dust & stress. Which are all hard bar the stress to escape from! But I am trying my best. But I have heard dairy and wheat could be something I should try and cut out and could help me so I will start with that I think,

    Thankyou

    xxxx

  • You are having a really tough time at the moment and I think that we all understand how you're feeling - most of us have been there or thereabouts at some point. There are loads of easy platitudes that we could trot out along the lines of not letting your condition get the better of you but, even though there is some truth in all of them, none of them will make you feel better in yourself at the moment. For myself, I used to feel very isolated and alone because nobody I knew had asthma so I couldn't ask for advice from anybody until I found Asthma UK and read old posts that showed me that loads of other people had felt the same as I did and found ways of getting through the bad times.

    It is worth remembering that many asthma medications have side effects and an inability to sleep is one of them. Switching your medications might help with that, so have a chat with your GP or asthma nurse. If you're not sure how to go about it, have a chat with one of the nurses on the Asthma UK site, who might be able to give you some suggestions about positive changes that you could make with the help of your GP.

    The other thing you need to do is find a way of getting on top of the distress you are feeling and everybody has different ways of doing this. If you need to calm down, you can get an app for your phone that helps you to regulate your breathing, which will help no end.

    Finally, THERE IS NO SHAME IN ADMITTING THAT YOUR CONDITION WON'T LET YOU DO EVERYTHING THAT YOUR FRIENDS DO. Be up front with your friends. Tell them that it isn't a drama, it's circumstances and while you can reasonably expect that there are times when you will be able to join in with everything, this isn't one of them, and you'll be quite happy sitting with a cup of tea and your book (get the Kindle app (or similar) on your phone) while they do whatever it is you're not comfortable with and they can come back to you when they're done. Everybody wins - you don't upset your lungs and you can do something to amuse yourself while your friends can do whatever it is that's currently out of your range without feeling bad. Everybody wins and, most importantly, you don't isolate yourself.

    Good luck, and keep asking questions!

  • thankyou so much! I will down the breathing app! my GP has tried to give me anti depressents but I dont want to take them. Anyone else take them?

  • You are not alone and never feel that , please , just share - it helps - sending youn lots of hugs

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