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When you are getting over a flare, how do you decide what you can try to do again?

Hi everyone!

I think this last long flare is mostly under control and the Dupixent is really helping.  I am trying to decide what activities and adventures   I can safely try again without triggering another flare.  Will avoid my triggers as much as possible but since there are so many of them, it is hard to do and still be active and social.  For example – I have found that some restaurants with wood-fired grills still bother my lungs.   Not quite as much as before but enough that I am avoiding those places.

Basically want to get as much of my life back as possible without starting another long flare.  I know that all of us have to deal with this at one time or another and am curious what you all have tried in regards to getting back into "life" without starting another flare.  

Thoughts and suggestions??  Thank you!!

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  • K8sMom2002

    First of all, Lisa, so great that the Dupixent is helping! Doing a happy dance for you!

    I tend to be super conservative … and I ask my doctor what things I can try and when I can try them. I also ask about whether pre-treating with my albuterol inhaler is a good idea. 

    Mainly I work in ever-growing circles … one circle is small and tight — only absolutely known safe activities, and then I cross the line to the next circle of activities that my doctor has said I should be able to do. Only after I have tested out the majority of them do I move onto the ones my doc says to pre-treat before trying. 

    My doc is a great believer in exercise as I can tolerate … if that's walking in the house a couple of times up and down the hall, that's better for my lungs than sitting around on a sofa. So one of the first things I try to do after a flare is to begin walking more indoors … then moving outdoors.

  • LK

    Thank you, Cynthia!  It still amazes me how it has helped!  So grateful for it!! 

    I am very conservative, also.  It took me almost two years after my pulmo suggested the Xolair before I would try it.  Trying the Dupixent seemed easier after that.

    Thank you for the great suggestions!  I love the picture of the circles of activities that you can do.  Visuals always help me!  

    I took a page out of your notebook and have been walking in the house.  

  • Shea

    Awesome advice Cynthia! I like the concept of spiralling outward slowly. 

    Lisa, I am so glad you are starting to see and feel progress. It gives me hope!

    I keep challenging myself in little ways. Like taking the scooter around the block with Tommy. Some days I can and some days I can't depending on my symptoms, my woman cycle, what I did the day before. It goes a lot by feel for me. Today, walking the house was difficult. 

  • Deborah Bartlett

    I have hope for you too, Shea!!!

    I do everything possible to avoid triggers. If I know I will have to be around a trigger, sometimes I use ProAir as a preventative. Of course, I can use Albuterol in a nebulizer as well. It depends where I am at the time to decide on using the inhaler or nebulizer. My mask is a great protector. 

    I think if you are headed outdoors, try to stay out there for a short amount of time at first. You could gradually increase the amount of time you spend outdoors. 

    If you are afraid of trying to do something or going somewhere, you can always contact your doctor to get their opinion. 

    Remember to ALWAYS wash/sanitize your hands after doing anything!!!! Don't touch your face until you have!

     

  • Pljohns

    Because of the type of asthma I have, I never know what is going to cause me issues and what isn’t so unfortunately, I tend to just jump back in things with both feet-sometimes to the best thing to do

  • LK

    Thanks for the suggestions Deborah!  I do try to wash my hands very often.  Can't handle the had sanitizer scents but do have those Wet Ones hand wipes in my car.  I get the Sensitive Skin ones because they seem to be less scented than the other varieties. 

    Lynn,  Maybe try to take things a little slower when you can?  Thank you for your post!

  • Emelina

    Thanks for posting this question Lisa! It’s tough to expand those circles. I’m stuck in this weird cross roads … I’m chomping at the bit to do everything (gym, bike, swim, fish, play) but have gotten myself into trouble simply by doing too much in one day! It’s beautifully sunny outside, but tree pollen is terrible outside. So I’m hiding inside like a hermit 🦀. It’s tough … that tension between wanting freedom and fun back, but safe guarding the lungs and the symptom control that you’ve achieved and not wanting to take backward steps. 🙏 maybe tomorrow …

  • K8sMom2002

    Lynn, it has to be frustrating not to have predictable triggers. Has there been anything that has helped you make more sense out of your triggers as you go along? Could it be a tipping-point sort of deal? You know, A or B won't do trigger asthma alone, but if you add C, it will? 

    Deb, love your idea about washing hands often! That helps in so many ways. 

    Em, the first circles are the hardest, I think … for one thing, at that point, my lungs are still really trigger happy and twitchy, so things that usually wouldn't irritate them do. For another, you are so right about the tension I can feel. As I'm recovering, the memory of my asthma flare is still super fresh in my mind, and I don't want to do anything that might set me back.

    I think that last one probably applies to lots of different kinds of disorders. 

    Would a mask help at all? I know you've talked with your doctor about antihistamines and other meds to control environmental allergens. And masks can be hot and uncomfortable as the weather warms up. But could you ask your doc if a mask might help you do more things outdoors?

  • Emelina

    Cynthia, great idea! The little circle I have here is comfortably uncomfortable, if that makes any sense? It’s so hard to push it outwards. Like Shea once said, it’s like that broken leg analogy. I’ve casted it, but now it’s time to rehab and it’s so scary. I can’t stay here because life is out there – I guess it’s a leap of faith but it can be so scary when like you say, the recent flare is so fresh in my mind. 😕 

    At least for me, I think now it comes down to fear of getting so sick again. Though my mind says it’ll be better now with better meds on board and a pulmo at the helm, the heart remembers the hard days of not being able to walk across the house or barely get dressed. I’m sure things will get better as more and more days of stability come and go and build up between me and the last 6 months. 🤞

  • LK
    Emelina posted:

    Cynthia, great idea! The little circle I have here is comfortably uncomfortable, if that makes any sense? It’s so hard to push it outwards. Like Shea once said, it’s like that broken leg analogy. I’ve casted it, but now it’s time to rehab and it’s so scary. I can’t stay here because life is out there – I guess it’s a leap of faith but it can be so scary when like you say, the recent flare is so fresh in my mind. 😕 

    At least for me, I think now it comes down to fear of getting so sick again. Though my mind says it’ll be better now with better meds on board and a pulmo at the helm, the heart remembers the hard days of not being able to walk across the house or barely get dressed. I’m sure things will get better as more and more days of stability come and go and build up between me and the last 6 months. 🤞

    Em,  I totally hear you on the wanting to do so many things we used to do but we remember how scary the hard days are that we instinctively want to not go there again.  Things do get better.  It is frustrating when it is only by teeny, tiny, baby steps though with occasional hops backwards.  We can do this!!  

    You are right.  As you build up more good-breathing days, it does get better.  I have to work on not being saddened too much by those backward-step days.  It is so easy, when on the upward road, to think that we have this licked!  Those days when our lungs throw a little fit again are reminders for us to take care.

    Thanks everyone for such great suggestions!