How to accept this may be as good as it will get with control of asthma

Hi everyone,

I am just looking for advice on how to accept having daily asthma symptoms that may never improve. I am really struggling with this. For the last 28 months of my latest 'flare up' I have been looking at the goal of everything eventually calming down and slowly reducing my meds but now I am beginning to think I am being unrealistic and this may never happen. How do you know? I really feel I can't see the woods for the trees on this one and don't know what to think!

I would really appreciate hearing how others have coped in this situation.

14 Replies

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  • Hey, this prob wont help at all so ill apologise now.

    But, now a days, I dont concentrate as much on the 'must get meds down to lowest possible dose'. If im having a good day, I know longer jump down a stage on my meds, I jump up and have the best day I can.

    I found I was stressing far to much on reducings rather than chillig and stabilising.

    The reduction will come naturally when your body is ready. With regards to the daily symptoms, unless im really having a down day and propwrly struggling, I just literally ignore them and carry on, if my PF isnt dropping and im not properly puffing away then my body must be doing ok.

    To others this may seem like a bit of a ""ah well its never goinfg to happen"" attitude, but iI literally found my life was being controlled by meds and symptoms and I didnt want that any more.

    I hope you end up seeing the woods soon and there are no pesky wolfs hiding in there!!

    Be thinking of you!!

    Xxx

  • Charlie, great advice! This is probably not at all approved advice, but JF, do you measure PF/symptoms daily? Because I found when I was allowed to stop doing that, it meant at least I didn't have to think about it all the time - otherwise I'd always be thinking 'how many puffs have I had today? And what symptoms exactly?' Partly the fault of the app I use which is maybe too detailed, but if you are doing this maybe stop unless you have an appt coming up and think it would be helpful (sorry, not helpful if you weren't doing it anyway, and it's just a little thing.)

    Otherwise...I agree with Charlie that reducing meds isn't the be all and end all. I sometimes get freaked out about having to rely on medication to do things and it not always completely working, but then I do think 'well ok, if I have to take this I'll just fit it into my day, it's only a couple more puffs'. Hard if you're on the sort of thing that has other effects, like pred, but if the side effects aren't too bad then I definitely would try not to worry too much about stepping down - I'm just seeing what happens. The symptoms, even without admissions etc, are more annoying...I do know where you're coming from. Even if things are a lot better than they used to be I do think 'oh I must be able to get rid of them completely soon' - and of course with us weird types you also sometimes have the issue of 'well you are well controlled, what's the problem?'

    Sorry for the massive ramble...not sure I'm really saying anything useful here! But I do know what you mean, and hope some of this helps.

  • Actually charlie-warlie, your reply has helped loads! I like the idea of enjoying the good days and not focussing on when and if things improve. I'm going to start that right now!!

    And I like the idea of the reduction will come when my body is ready. My symptoms have improved loads since I was at my worst and I know that but i have been wanting more and as you say my body isn't ready yet.

    Thank you for your lovely, insightful reply and I do quite like wolves :-) xx

  • hehe JF, I was going to say I like wolves as well! Somehow I've ended up with 4 stuffed ones...

  • Thanks for your reply Philomela.

    No I don't do my peak flow, I haven't since I was in my 30's when a consultant I was seeing then said don't worry, go by your symptoms as my peak flow NEVER reflected my symptoms.

    I am going to relax about the meds I am on and I will know right away when things settle down anyway so why focus on it? I guess it's the first time I have been on so many meds for my asthma and the first time they haven't calmed it down within a year. I HATE being on so many!

    I have an induction at the gym next week so am hoping improved fitness may make a difference too.

  • Very sensible re PF! I keep getting asked to do it unfortunately - I find charting the number of inhaler puffs per day, which my app can do, is more useful but they don't tend to look at that.

    Good luck with your induction, hope it helps! I'm seeing a physio at RBH tomorrow, they're meant to be helping with exercising so I'll pass on any helpful tips I get. I hope it's going to be more than just the same old breathing exercises.

  • Good luck with that, I hope you learn something new! I would definitely love to hear any tips regarding EIA too.

    I feel so much more positive after your posts charlie_warlie and Philomela, so thank you xx

  • Im another one who dosnt do PEF only when unwell as a quick guide as find people get to stuck when its lower than expected so go on how Im feeling. I find I do what I can when I can, on good days I always do as much as a can so I dont have to worry when not having a good day.

    When it comes to meds it dosnt matter how many tablets you take its if they are working, if there is a medication that isnt helping I stop it and every now and in the past been admitted for meds reduction. And i try not to get to reliant on nebbing 4 hourly on the dot for example if having a good day I will leave it a bit longer but use my inhaler the first inkingly of tightening coughing etc. I also put my tablets in a dosset box and split the once a day once so take some of them in morning and some in evening so it looks like less it tricks the mind! As for blue inhaler and neb machine I always leave one in a purse in my handbag so it isnt staring at me and I dont have to think have i got it with me.

    Im so used to being a little sob and coughing so I just ignore it unless it dosnt sound right or is abnormal I just get on with things... and think the key is never let is stopping you doing something you want to and feel able to do just in case get sick!

  • No worries JF, I never know whether my posts are actual helpful to anyone or whether I generally just ramble...LOTS lol

    Really hope things start to settle down soon, and your positivity stays on a high!!

    xxx

  • Thank you Charlie_warlie.

    I am usually an eternal optimist (with a touch of realism thrown in) but, I definitely had lost my way and needed a whole new perspective on my situation.

    I have felt more relaxed today and feel less pressure to have things improve xx

  • I am exactly the same JF, but you can only be the eternal optimist for a period of time before things get too much. its only natural and I guess this is the best thing about this forum!!

    so glad you have had a better day today!! massive hugs for you!!

    xxx

  • Thank you bird for your reply. I am now trying to look at my situation as the norm not necessarily as a means to an end.

    You are right Charlie-warlie, optimism can only last so long and I do think mine has dried up! Lol.

    I love this forum too, I was so isolated with it all before. And being a 'weird' one, GPs aren't always supportive either. I didn't realise there are other weird ones too until reading about others on here! xx

  • hehe we have to stick together JF! Weird asthmatics unite!

    I do love the internet as I also would have gone round the bend this last year or two without the forums. I'm glad I could help and that you're feeling more positive now.

  • I don't have bad asthma on a day to day basis but as soon as I start exercising my symptoms appear - sometimes within as little as 5 minutes. I can't do anaerobic work which I need to do my usual training sessions. I also work as a taekwondo instructor. My asthma nurse says as long as I am not taking more than 12 puffs of my sybicort inhaler in one day then I am fine. Yet last week I had bad chest pains when exercising which didn't go away with my medication. Went to the doctors and she said I should not have been taken off my salbutomol reliefer in the first place (5 years ago). So, I am going back to my asthma nurse but I am afraid he will say that everything is still fine. When I have a bad attack I pass out, which my instructor helps me with but I am now too afraid to exercise alone. Any advice on what to do would be appreciated :)

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