People we interviewed mentioned various ways that they dealt with having severe asthma and its consequences. These ranged from the importance of planning ahead, finding different ways to do things, and learning to be independent. Not everyone was able to manage by themselves, with some people having family members as carers. The most common themes were need for acceptance of the illness and ways to manage an acute situation.
Ian sums up how to live the best life possible.
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It’s not unsurmountable problem, that you can live a normal productive happy life, as long as you do the right sensible things, and take your medication, take your doctor’s advice, and stay out of situations that cause you problems that you probably know what they are. I don’t imagine that it’s something that you just wake, as I said before, you don’t just wake up one morning and say, oh wow, I’ve got COPD today, that I never had yesterday. It don’t happen like that, I don’t think. Does it? As a general rule I would imagine it’s a progressive thing. Yeah. Don’t do silly things. Like Yul Brynner said, don’t smoke. Don’t panic. Try and be calm when you’re having trouble breathing. Don’t get excited or upset. Turn your mind to positive things and breathe slowly.
Denise realises that she needs to be able to manage by herself.
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You can’t just rely on every other person to be there for you, because lots of time you’re by yourself, so you’ve just got to learn to manage things by yourself. And to me that’s the only way to be, be independent. And learn the signs, know what it is, and manage it, the best you can. You get help as soon as you can, but before that, manage it by yourself.
Acceptance of the condition long term resonated with the people we interviewed.
People with severe asthma explained that really there was no choice but to accept the situation and get on with life, as complaining does not change anything and giving in means the fight is over.
Frank spoke of ‘mastering’ severe asthma.
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I’ll try anything as long as it improves me. You have to do it. If you don’t do it, if you let it win you’re gone, you are gone. You’ve got to master it, no question about it. That’s the end of the story.
Marg just gets on with it despite the discomfort.
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I think oh I’m too bloody tired to do all this you know, I don’t want to get up and go and do all the treatment, the coughing. And if I lie there a little bit longer then eventually my head says ‘well, stay in, that’s going to be much worse. Get out of bed, sit at the end of your table, it’s the same up there as it is here’. I sit down at the table and I go through the process. I get my blood pressure monitor out for a start. I check all that out… grab the nebuliser when I need Ventolin, when I’m coming out and take four puffs straight off. And then I’ll sit down, I’ll get a cup of tea or a glass of water, a glass of water, cup of tea and I know that I’ll be… if it’s like that I’m in for the long haul, so… and I never think past that.
Some people with severe asthma coped initially by denying its existence. Tony didn’t want to admit it to himself and didn’t tell his wife. Marion also initially denied the need for medication but eventually confronted her illness. Responses varied regarding whether to tell others about their asthma, with some people we talked to being upfront and others not mentioning their asthma.
Michael feels comfortable to let other people know his limits.
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It’s understanding why you can’t go bush walking or understanding why you can’t pat that cat or understanding why you don’t want to do something you know is actually going to aggravate a situation. Rather than having to explain all the time “look, I can’t do that because I’m asthmatic”, it’s “I’m sorry, I can’t do that today”.
Patsy does the best she can to be part of things, not letting on that she is struggling physically.
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It’s in a situation where there’s people and we’re having a good time and maybe my body’s telling me I should leave, I won’t. Because I want to be part of it and I want to enjoy it so that’s what I do as best I can. In state school and I thought I’m going to get up and do this dance. By the end of it… I thought I don’t know if I’m going to be able to finish this dance but I thought I’m going to but I really shouldn’t have. It took me a while to get my decorum back. But I didn’t say anything to anybody. I just sat down till it passed.
People with severe asthma also talked about learning to adapt. Knowing and acknowledging their limits was an important coping tool for many people in the study. Being honest with themselves about what level of activity was possible at a given time, was helpful for some people, although others found they pushed the boundaries more as time went on as they were more used to having severe asthma.
Lauren has found a level of activity which works for her.
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For example, like, I’ve done 10 kilometre runs, but I understand that I can only run at a certain pace for the whole time. And I sort of found that happy medium of that pace, without it aggravating my asthma further. So, that was interesting and then now obviously I play netball, which I did play when I was younger. But now, as I play now, I can sort of see. Like I think I’m just better at understanding my restrictions, but I still don’t know whether, like you, like, “Should I be pushing myself further, if I felt really, really tight in the chest or should I just stop?” Yeah.
Karen knows what’s usual for her and that helps her to monitor the situation.
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I don’t worry if my peak flow is 120, kind of that’s like, oh shall we worry? Maybe. We’ll keep an eye on it. So yeah, we push the boundaries more and more, and that’s the problem though, the worse your asthma gets the more you’re willing to push the boundaries, because you get so used to feeling like it.
When dealing with acute shortness of breath people with severe asthma stressed the importance of not panicking. Strategies used to calm themselves included concentrating on breathing, listening to your body and being aware of the signs, exercising willpower and talking to themselves.
Helen finds it scary but still tries to keep calm.
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In fact, as I get older, unless I’m very, very severe and when I’m like that, I’m actually scared, I don’t even hear the wheezing and squeaking and stuff like that like I used to when I was a lot younger. It’s just like there’s nothing and I can get completely covered now but I can feel my diaphragm pumping and pumping and trying to breathe. It’s alarming. You’ve got to try and keep yourself calm but you can’t explain to someone else when it’s happening and how you feel because you’re just struggling for your life.
Ian has learnt from experience how best to deal with an asthma attack.
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That’s probably something that comes with experience of it, and having it for so long, and knowing that getting agitated is only going to make it worse. And it’s a little bit of, I don’t know, does take some willpower to think to yourself you’ll be alright, calm down, just go steady, and breathe as best you can. And it’ll come good, in time, hopefully. And if it doesn’t, well not much you can do about that either. So there’s no point in panicking over things and worrying about things that you can’t control, you can only do what you can control, and you do that as best as you can.
Michael has found that calming himself down similar to meditation is helpful when he has an asthma attack.
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The puffers cut through and allow you to breathe deeply and the big thing I find is that it’s almost like you start to meditate. If you can calm yourself down, you can open up your airways and actually get more air into the lungs, so you can do that by using your puffer, but also by really calming down, so things like meditation and yoga really help people with asthma. They have certainly helped me over time.
Patsy uses mind over matter.
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When I went to Europe without any… when I couldn’t breathe I thought just don’t panic because the worst thing you can do is panic. Just try to breathe slowly and it might pass and that’s what I did and that’s what I still do. I try not to panic. Sometimes it’s hard not to panic but it’s always mind over matter and you’ve just got to try to be calm all the time. But if I do panic, it gets worse.
Another way that people with severe asthma dealt with being breathless was to alter the positioning of their body to improve their ability to breathe. This might be standing or sitting rather than lying to assist with sleeping or doing a regular exercise.
Hassan finds posture is important.
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Congestion, as I said, mostly it happened during the night, so I’d get up, I’d try to sit, because I cannot sleep. If I bend like this, it becomes better, it’s less pressure on my chest. I try to change the position because I cannot lay down, so I try to sit. Sometimes I’ll go and have a little walk, so we are living at upstairs, I’ll go downstairs and have a little walk, and then come back, but I cannot sleep, so my whole night is gone.
Marg uses the Bowen manoeuvre.
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I’ve done a lot of reading and one thing I’ve learned was there was a Bowen move that if you, well it’s better to lie down but if you lie on your back and you go into your solar plexus and you do the Bowen move up while you breath in then back down and back up then let the air out. That certainly can help. It can help and there was another Bowen move where you press the back of your skull where your neck dips in the back and you put your finger and hold that on there and that really really helps me doing that. Not when I’ve got an asthma attack you know; when I get around there sometime I think “oh what’s wrong with me my legs are weak” and I don’t get the wheeze at all very much, I just get short of breath. But that doesn’t even give me the first…if I am really conscious I try to focus on my body the first thing that I would probably notice is feeling weak, and I get weak, and my legs get shaky and I can bet anything if I go [breaths] can you hear it there? But when it’s bad I don’t get so much the wheeze, but my asthma is when I can’t get the air out of my lungs and that can be very hard to get out. So I go get the puffer, take a puff do the Bowen move, drink plenty of water. I might not have had been drinking plenty of water that would make a difference to me and hopefully after four puffs it should go away most of the time.
Alternative ways of doing things were often mentioned by people we spoke to as a way to cope with severe asthma. For example, some people with severe asthma had to accept that they might need to drive instead of walking even short distances at times.
Wayne stops and rests if needed.
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I guess I keep pushing. I do what I have to do to get through the week and get through every day. So I’ll do whatever I’ve got to do. So for me if it’s in the ute, I’ve got to go and park up for five/ten minutes and just stop and rest my eyes, then so be it. And then go off again. Don’t say nothing about it.
Marion has learned not to put time pressure on herself.
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I think part of that can also be about not working full time so that there is plenty of time for things to sort of spread out into. It doesn’t… if it isn’t done today, it could get done tomorrow or next week or next month or you know, whatever. So there isn’t the pressure to get things done in a certain time frame. I think before, you know like I just used to push myself and make myself do it. And now, I’m more ready to say, I just can’t. You know, and just let it go. So I’m a bit more ready to sort of give up on that stuff rather than just, you know, drag myself through it. Which isn’t necessarily a bad thing.
People with severe asthma liked to plan ahead including medication supply. They had reliever inhalers available everywhere such as at work, in the car and at home. To stay on top of things, establishing and maintaining a routine was also seen as important. Organising appointments for certain times of the day helped Shannon. Others were alert to their surroundings. See also Triggers.
Monique explains how panic sets in if she doesn’t have her reliever puffer, Ventolin, handy.
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You always have to remember your Ventolin. If you forget your Ventolin, the panic, the panic that you feel, even if you’re not having an asthma attack. You happen to look in your handbag for something and you realise that you don’t have your Ventolin and you’re just like, what am I going to do? So we started carrying ones in the car so there was a spare there.
Written asthma action plans help people to recognise worsening asthma and decide what to do in response. They are one of the most effective asthma management tools available. People we interviewed found having a written action plan gave them peace of mind.
Mick explains the importance of having an action plan he can rely on.
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I think right-o, now I’m not gonna let it get me down. I come over and that’s when I’ll go and do my plan and action right, take the steroids, take my medication and just relax and that’s it. Yeah that’s how I deal with it, I just control it. I don’t panic at all. I think bugger it my chest is not good today, I’ve gotta fix it up.
Exercise was mentioned by many participants as being helpful in managing their asthma, as well as keeping up social interactions with others. It is important not to overdo the exercise and stress the body though.
Hassan prefers to get out and be active.
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So I try to go out and be active, you know. I feel if I stay at home and do nothing, I feel worse, even my body becomes worse. So I like to be active, to be in the society, to socialise with the people and you know work, work is making me alive, you know.
Michael describes how exercise can be both good for asthma but also potentially harmful if overdone.
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I think the big thing with managing the asthma has been exercise. Swimming I don’t do a lot of now. Walking yes, bike riding, not enough. You do have to watch your weight. The more weight you have on the body, the harder it is in terms of breathing. Again, you’re stressing the body out, so it’s a matter of even when exercising, not over exercising. Physical exercise can act as a trigger for asthma and certainly you see people in gyms who are having asthma attacks because they’ve pushed themselves way too far. Build up your exercise slowly, don’t just jump into it and expect you can swim 20 laps of an Olympic pool. Just do it slowly, because otherwise you will stress the body and trigger asthma.
