Dee

Age at interview: 52

Age at diagnosis: 23

Brief Outline: Dee, age 52, was diagnosed with asthma at age 23, soon after giving birth to one of her sons. She is white European and has four children. She works as an office administrator in the financial sector. Dee has learned to manage the condition successfully. She describes herself as ‘an organised asthmatic’ as she feels that there are steps you can take to help to make things easier - to take the preventative medication even when you’re feeling well, ensure that you keep your medication up to date, are aware of what medication you are taking, and that other people know what to do in case of an emergency.

More about me...

Dee was diagnosed with asthma 23 years ago not long after giving birth to her son. After the birth she experienced post-partum hypothyroidism and there was an episode where she experienced breathing difficulties. She was admitted to hospital and was diagnosed with asthma. She was prescribed both preventative and reliever inhalers, and because she felt fearful of having another serious attack she says she made it her business to ‘get it under control’. Dee had one further serious episode where she was hospitalised and treated with nebulisers and prednisolone, and since then she has managed her symptoms successfully. She goes for regular checks at the asthma clinic because she feels it’s important to be monitored and that the medical professionals get to know you so that if another attack occurred they are familiar with your history.

Dee says that the best advice she has had has been to be ‘an organised asthmatic’ - to take the preventative medication even when you’re feeling well, ensure that you keep your medication up to date , are aware of what medication you are taking, and that other people know what to do in case of an emergency. She keeps inhalers in strategic places so that there is always one to hand – in her bag, at the office and at the place where she goes to stay on holidays. She also makes sure that the people around her know what to do if she started to have an asthma attack so her children, and her work colleagues all know how to help if anything should happen.

Dee can go for long periods with no symptoms at all and says it can be easy to forget she is asthmatic. Her main triggers are smoky atmthospheres, stress and tiredness, and cold or wet weather. Having asthma does not impede her life and she makes a point of exercising regularly - using the reliever inhaler before taking part in activities such as swimming , singing, walking the dog, yoga…., and she is mindful of the fact that engaging in exercise helps improve lung function and keeps her healthier.

If Dee begins to feel wheezy she knows that using the reliever inhaler will alleviate the problem within a short space of time, but she says if you ignore the symptoms and delay taking the medication it can be easy to start to panic, which in itself can exacerbate the symptoms.

 ‘ I think I’m now sort of sensitised to it where it would, I’d pick it up at the first wheeze, the first tightness in the chest and do something about it then.’ Dee has become familiar with her peak flow readings, which she finds useful as an objective safety measure and she feels it can help you to know if it would be advisable to seek help or to take more medication.

Dee varies the dosage of her accuhaler (preventer inhaler) according to how she feels, sometimes taking only one puff of the inhaler, but other times if she feels her chest is feeling a bit ‘tight’ she may increase the amount or number of times she uses it per day ‘I’ve had enough chats with my practice nurse on the asthma clinic to know that they kind of, well, I think maybe it is that they’ve known me long enough, they sort of trust me to make that judgment now and I trust myself to make that judgment now. She finds that having built a good relationship with the asthma nurse provides her with reassurance and a ‘safety net’ if she feels she needs it. So that although she manages her condition herself, she is not alone with it.

Dee has had a severe asthma attack in the past, but now her asthma is successfully controlled and she sometimes forgets she has it. [AUDIO ONLY]

I can go for years without needing medication or needing to think about it and if people ask me, you know if you’re filling in forms and they ask you about your health or whatever, I do have a tendency to forget that I’m asthmatic.

But if I am in a smoky atmosphere, which doesn’t happen as much now with the smoking ban, or under a sort of prolonged period of stress of tiredness or lack of sleep or any combination of all of those put together, I would be susceptible to just, out of the blue, you know, feeling really breathless.

So it doesn’t it doesn’t impede my life. It doesn’t get in the way but I think if you’ve had a really serious asthma attack, you don’t forget the fear factor. So, you know, there’s a little voice in the back of your head constantly, which means if you’re going on holiday, you know, you can manage without your tan lotion but you will not manage without your asthma medication

Dee says that it can be tricky to breathe in the correct dose of medication and it’s important that health professionals teach people the correct technique. Using a spacer can help make things easier. [AUDIO ONLY]

I know from talking to asthma nurses, specialist asthma nurse and asthma professionals that they could spend all day and every day teaching people how to actually take the drugs properly. A lot of people have the medication and they think they’re taking it but they’re swallowing it or losing it into the air or whatever but they’re not actually getting it into the lungs.

Would you maybe describe how you should take it?

Well, I think a lot of people find it very unnatural at the beginning, when they’ve got like say, the salbutimol inhaler and sometimes if people are struggling with that, their GP or their clinic would give them a spacer or a...

Is that that tube?

What’s the other word for it? A spacer or a volumetric is it? I think it’s called, but that basically, dis allows the dose to be dispersed into a chamber and then you’re able to actually suck the air from that chamber down into the lungs. But I think what people find to be unnatural is you need to artificially force the air out of your lungs, to empty your lungs, to create a vacuum in order to receive the medication in a single inhale and that’s not something you do day in daily. It feels awkward. It looks awkward. It’s an effort [laughs]. It’s not pleasant, yeah. So I think maybe people get given the medication and without somebody standing and almost like coaching them. It’s a skill and without coaching the skill you could be out there with your medication thinking that you’re taking it and getting a bit of it and not all of it. So any of the clinics that I’ve been aware of over the years, I think they put a tremendous amount of effort into it all of that, of making sure people, and maybe children are easier than adults. I don’t know. Maybe adult onset is worse because we’re not as good at learning new skills or maybe or maybe it’s easier for younger people but I think there could be quite a lot of asthmatics running around who are using their inhalers but not getting the dose.

Dee had mixed feelings about using steroid tablets because of potential side effects but believes that there are unlikely to be ‘huge detrimental effects. [AUDIO ONLY]

I didn’t like it at the start because it’s almost like just, I mean I think in everybody’s head there’s a kind of a, don’t go there factor with taking steroids because it feels like you’re, you know, polluting your body in some way. But I guess over time, I’ve come to, well, when I had the serious asthma attacks and I had to take serious doses of steroids so I would have been taking prednisolone and I would have been very aware that the prednisolone affected the body. You could you could feel it working in your system. You can feel your hands. You can feel it in your joints. It’s like a slightly burning sensation in your joints and your hands, like a, and it’s not a pleasant sensation. So you know that your body is processing some serious intervention when you’re on, when you’re taking that medication but you need it because you’re, you need that intervention to help you move on and get through the asthma attack. So if you balance that against taking a very metered low dose preventative on a regular basis. Well, you quickly work out by a process of elimination, I’d rather take this very low preventative dose. Obviously, intellectually, you’d rather be taking nothing, yeah, but, you know, when it comes to needing to be able to breathe and feel confident about your ability to shift oxygen and get on with your day, then the lesser of the two evils. So I suppose you just, you get your head around that after a while and it doesn’t become such a demon but I think a lot of people initially, when they realise that they’re dealing with a steroid of one or other form, they just have a kind of like a garlic and crucifixes, you know, “I’m not putting that in my body.” So and I’ve heard a lot of people say that, particularly when their children are diagnosed, yeah.

Worried about giving their children steroids?

Worried about giving their children steroids and feeling somehow some sense of that its there’s something failing.

That they haven’t been able to create a situation where their child didn’t, this didn’t have to happen. I think people, in that situation, need a lot of reassurance.

You know, that this is a very effective medication. On a scale of one to ten, the type of doses that are normally given out, as I understand it, are not going to have huge detrimental effects.

And, you know, if your airways aren’t open, you don’t have much quality of life. So you’ve got to do that.

But I don’t know. Maybe that’s just sort of me my age and stage and maybe young, younger people wouldn’t I don’t know maybe, younger people being diagnosed would just, you know, accept it and go with it and have a different attitude.

And have there been any specific side effects of the steroids?

Just that sensation of burning in the joints and the hands but that would be when you’re taking, you know, prednisolone as an intervention.

When you’re already…

Really bad?

Really in need of that. Obviously, that’s for me, that’s a twice in a lifetime experience, yeah.

Dee explains how she can feel both physical and psychological symptoms during an asthma episode. The aim of medication is to try to avoid getting to that point. [AUDIO ONLY]

It’s like as if, the sensation is of constriction in your windpipe and in your lungs. It’s like you’ve got a balloon that is, you know, won’t blow up, which I guess is your lungs. The hardest thing to control, when you have an asthma attack, that you feel is getting out of your control because I suppose the thing to remember is that you might have an asthma attack, which just means you’re feeling a little bit wheezy, where I don’t know, you’ve, you know, a bit of exertion or bit of tiredness or whatever, and you know that if you then go and get the reliever you’ll be fine. But you can also get to a point where you maybe ignore that for a while and then you start to panic, so the physical feeling of being short of breath then becomes a psychological feeling of fear and panic because your body becomes really aware very quickly that you’re in danger and your, just your normal fright flight responses kick in and you you’re looking for action. You want something to happen. But your ability to take that action is diminishing by the moment because, of course, you’re not actually processing any oxygen and you need people around you to know what this looks and feels like so that people around you, family, friends, work colleagues, would be able to work out that they need to go and run and get your inhaler or they need to phone for help for you. So I suppose first it’s a physical feeling and then next it’s a psychological panic.

And of course, the whole aim of the medication is to ensure that you never get to that point.

Dee explains that she saw the asthma nurse and GP a lot at the start, but gradually took over the management of things for herself. ‘You can manage to do an awful lot to not let it escalate'. [AUDIO ONLY]

I think I was lucky in that when I was first diagnosed I was close to a really good asthma clinic with a really proactive nursing staff, who kind of really made it their business to ensure that you were getting a dose out of the inhaler, which is the other thing at that start, that you’re actually getting a full dose. And they were, I was highly motivated to, because of my experience I was highly motivated to find a way to get this thing under control. And they were willing to talk to me endlessly about it and have any number of phone calls and any number of visits and any number of peak flow meter for the one that I just lost and all that sort of stuff. So I guess that gave me confidence over time but I mean I think that, generally, my experience is that the services attached to your GP clinic for asthma are very proactive.

Very good, yeah.

Okay and at that the start, what did they tell you to do?

To take the dose as prescribed. Read your peak flow. Mornings and evenings, fill it in your diary. Keep that diary consistently for a month and come back and see them in a month and they would then, you know, put you on the I can’t remember the name of the machine that they measure your lung function.

Right.

And then send you away and say, “Well, you’re doing okay. That’s fine. Do that for another month and then come back.” And then, of course, what happens is you’re fine every month for three months and then they’re getting bored with you and you’re getting bored with them and, yeah, but and I think what they try to do is get you to understand that you have a lot of control and that you can make quite a lot of the decisions for yourself and that they’re in the background then.

I suppose the thing about asthma is, as far as I, well, certainly my experience of it is that you can manage to do an awful lot to not let it escalate into a really serious attack and a serious attack is a big chunk out of your life, you know. You’re going to go into a formal hospital setting. You’re going to be nebulised. You’re maybe going to be given heavy duty steroids. You’ll maybe need all sorts of other help. Your life is going to be on hold until you and you’re going to feel like a wrung out dish cloth afterwards for a week or two. So it really motivates you to kind of try to do everything you can not to let that happen.

That’s always sort of in the back of your head.

It is with me, yeah. I don’t know. I don’t know how common that is but it is with me.

Dee varies her medication according to her symptoms, and keeps in regular contact with the asthma nurse. [AUDIO ONLY]

And that’s a little device that allows you to take a puff of dispensed medication and that would be my daily dose and in the normal run of things, I’m either taking nothing because I’m doing good without it or I feel I need some help and taking a dose of that in the morning. The next step would be that I’m not finding that that’s enough and I’m taking a dose of that morning and evening.

If I then get into a situation where I feel asthma has cut in the sense that I am breathless and it’s limiting my activity I would keep my reliever close. Chances are I would never really need to use that reliever during the day, very very rare. It would probably be in the sports bag and used to take a puff before going into swim or take exercise. And I would up that Accuhaler dose if I felt that I had a sniffle or a cold or my breathing was compromised. But if I get to the point where I’m upping the dose I’ve normally, by that stage, phoned the practice nurse or the or the asthma clinic and said, “Look. This is what I this is where I’m at, yeah.” And they would, you know, chat it through with me and normally say, “Well, if you feel you’re doing okay with that do that and if you’re not then come in and see us.” But again, it could be, that’s a once a year.

Dee had her most severe attack during the night which she says is a time when it’s more difficult to make proper decisions because you are tired. At other times it’s easier to be more aware of your peak flow measurement and use that as a guide. [AUDIO]

I think I would recognise when I’m starting to have problems and try to take action earlier but it’s just I had that experience where I woke in the night and very often an asthma attack is something that happens in the night and wakes you from your sleep, the shortness of breath and it’s the fact that if it’s the night and if it’s dark and if you’re feeling bleary eyed and if you’re already not functioning at a hundred per cent, you don’t really know anymore how near or how far you are from a dangerous threshold. So you need an objective measure. And I learnt that when I let my reading drop below two hundred and then had the hospitalisation and I now know that the worst time for you to be objective about how well you are is when you are unwell. So you need something that you can see in black and white.

You know, and so that’s, for me that’s what the peak flow meter is about because there is a kind of a need to decide when you’re in so much danger you really need to seek help and you need to be moving towards a car or a train or a bus and towards a hospital or a clinic, as opposed to going on taking more reliever.

Because one of the dangers is that you think, “Oh, I’ll take more of my Ventolin and then I’ll be fine.” And in actual fact, you’re not going to be fine and you need to use that time to go and seek you know, another intervention.

Dee says it’s important to have a relationship with the asthma nurse so that she knows you and how asthma affects you. [AUDIO ONLY]

One of the things I’ve learnt is that it’s important to go back regularly to your asthma clinic, even if you think you don’t need to. Mostly because if you don’t know who they are and they don’t know you and you’re not familiar with it, then if you did get into difficulties it, that’s harder for you really.

So probably every six months I would go and phone up and see my asthma clinic. I think they’d like me to come more frequently but I kind of feel that’s okay unless I’m in difficulties.

If you get a, if you’ve gone through a period of having little head colds or you’ve got, I don’t know, viral thing going on, you know, phone the clinic. Normally, they’ll give you advice on the, over the phone because if they know they can do that. Now, this is the thing, if you’re not going to your asthma clinic regularly then you’ve got go and see somebody at that point when in actual fact all you’ve got is a head cold.

But if they know you and they know your norm and you know your norm you can then manage your asthma by, you know, giving them a call and saying, “I think I’m going to double up on my Accuhaler.” You know, take it, you know, double the dose morning and evening to get you over that period and then you, you know, use your peak flow or use your own judgement until the next time you’re due to go to the asthma clinic

Dee spoke to friends and family, her GP and asthma nurse to find out more about asthma and help her learn to manage her condition. [AUDIO ONLY]

If somebody has a member of the family or a child or they’ve a friend or they’ve encountered it, they tend to sort of understand it and know what’s going on within limits. But they anybody who’s never encountered it in one form or another, I think it’s just a, they don’t, you know, they don’t really understand.

So I’d say the general, accurate information is, the level of accurate information, actually probably quite low in the general public, I would think.

Okay. And what about when you were diagnosed, what sort of sources of information did you tap to find out more about asthma or did you look for anything?

I would have read about it. I would have spoken with friends and family, who were, you know, medically qualified.

I would of I would I remember at the time doing a little bit of research about what the medication was because the word steroid kind of didn’t sit very well with me and I was wondering will I be taking this long term, what does it mean?

And doing bits of research about what it really meant. And I would really have loved to have had somebody telling me what triggered the adult onset asthma in me but I don’t know. I have my theory that it was, you know, general other health problems, maybe quality of air. But that would have been it at the time and I suppose just I have I have a general interest in it, and if, you know, there’s anything in the press or there’s any bits of research that come across, you know, you’d always sort of ping into it and have a listen. But I think I think the big thing that I’ve learnt is that it’s less about maybe what the medication is and it’s more about the management and the behaviour of it.

Kind of taking a responsibility for it and getting to know yourself and your own responses really, really well and then having access to, you know, your asthma clinic or your practice, your GP’s practice or your practice nurse or whoever it is that, you know, you can get that support from and having somebody to just go and, you know, chatted over with and of your fears and concerns.

Yeah, the management of it I think is the thing that.

The key issue?

Is the key issues, yeah.

And the internet probably hadn’t taken off.

Not when I was diagnosed.

Yeah.

It’s so long ago.

The best piece of advice Dee was given when she was first diagnosed was to ‘be an organised asthmatic’ She has worked out ways to make sure she is able to manage her asthma that help her to feel she is in control. [AUDIO ONLY]

And I do remember being told quite early on, when I moved house and came to live in another area, I was given a very good piece of advice, which was that the best way to be asthmatic was to be an organised asthmatic. And that means keeping a note of your medication near your telephone or in your mobile phone or in the glove compartment of your car, or in your purse or something, so that if you’re ever, I don’t know, on holiday or away or you forget and you need to get to a pharmacy or whatever, you’re not guessing about it. Because even though you’re taking it regularly you can forget what the dose is and what the names of the drugs are. And the other thing was to take seriously the use of the preventative medicine and the third thing was, and I used to keep a diary in the early days. I kept a daily diary and then I got bored with that and kind of got to be able to live without it. The other thing was to keep a peak flow meter about your person. So I have one in my office and I have one at home and I have one in the car and I have one in the holiday home, which probably sounds a bit excessive, but if you wake in the night and you’re having difficulty breathing, yeah.

The next time I was hospitalised, I’ve only had that experience twice, I was hospitalised and nebulised and treated with prednisolone for another attack and that was because I misjudged how far down into breathing difficulties I was because I didn’t have a peak flow meter. And my reading had fallen below two hundred and I thought I’d feel great in the morning because this was the middle of the night and I didn’t. I just kept on feeling worse and at that point, there’s no point in using the reliever medication any longer because you’re well past that stage. So that taught me that, you know, your peak flow meter is an important piece of kit and they’re bulky, awkward things. It’s not the kind of thing you can keep in your handbag. Maybe one day somebody will invent a little neat, tidy handbag size one. But so then that’s what I do. I can go for years without needing medication or needing to think about it and if people ask me, you know if you’re filling in forms and they ask you about your health or whatever, I do have a tendency to forget that I’m asthmatic.

Dee feels a responsibility to do what she can to help improve her lung function ‘ It doesn’t have to be training for a marathon or anything like it…..it’s about taking a bit of control’.

The other thing I guess is worth mentioning is that if I go and take exercise I normally use the reliever prior to getting in the pool, prior to going into the yoga room, prior to going to the gym, that’s if I went to the gym regularly anymore [laughs]. And exercise helps because it just improves your cardio, your ability to, your lung function, yoga was particularly useful. Swimming is very useful. Singing is very useful. Anything I think that just really keeps your lung capacity in full use and sort of forces you to, gardening, walking the dog, hoovering the stairs. Yeah, anything at all that just sort of, and I’m aware of that happening now in a way that maybe I wouldn’t have been what before I was asthmatic.

So it doesn’t it doesn’t impede my life. It doesn’t get in the way but I think if you’ve had a really serious asthma attack, you don’t forget the fear factor.

What I’ve learnt is, you can do an awful lot with your own general health if you take a kind of a, if you take and a run and a jump at it and you know for instance that you need to lose a bit of weight or you’d been out of exercise for such a time and take yourself in hand for a month or two and see if you can improve that. For instance, if I, one of the things that would happen to me intermittently is I would be busy at work, I’m neglecting taking regular exercise and then every so often I have to give myself a talking to, go back to the swimming or go back to the yoga. That’ll last for, if you’re lucky, three months as a sort of a regular thing. You feel the benefit of that. You can run up and down stairs easily. You can feel your lung function improving, yeah. Then you go on holiday and do nothing for two week, yeah, then it’s you get distracted with family and things happening and before you know it, six weeks have gone past and you haven’t done any regular exercise. And it’s things like that, I suppose I would kind of think, “Well, what can I do for me first before I.”

Yeah. But no, I’m lucky that I’ve got good health. Thyroid condition is controlled with thyroxin. The asthma is controlled with the drugs, when I need them, and I can go for a very, very long periods of time where I don’t use the asthma drugs at all.

As long as I have the inhalers and the accuhaler with me, nothing. I do feel a responsibility to, particularly as I get older, I do feel a responsibility to put a bit of effort into my lung function. And I’m one of those people who just doesn’t get on with gyms. I can’t, like I just can’t get the gym thing at all. I just get bored. But I like to dance. I like to sing and I like to do yoga and I like to swim, walk the dog, yeah, cycle.

And any of that you can really, in quite a short period of time of taking short bursts of exercise, you can make a really big difference to your lung function. You know, doesn’t have to be training for a marathon or anything like it. So I suppose I maybe that’s the only thing I have come to recognise that without an intervention, without medication there’s a responsibility on me, if you like, to kind of do what I can do. To keep the lungs in good condition. Now the fact that I have to have my preventative and relieving medication with me to do that is that’s just an outcome of the condition. But it doesn’t mean you can’t work on with improving your lung function. I don’t know if that’s ever, I don’t know if anybody’s ever measured what difference it makes to asthma but it makes a difference to your general health. And that can only be a good thing.

So I suppose it’s about taking a bit of, again, it’s about taking a bit of control and a bit of responsibility for it yourself.

Dee says be organised when you go away on holiday even if you don’t always need your medication, it’s best to have it with you.

You know, there’s a little voice in the back of your head constantly, which means if you’re going on holiday, you know, you can manage without your tan lotion but you will not manage without your asthma medication. Yeah, and I have been on holiday and forgotten it and then had to go in a pharmacy and, you know, ask for it and sort it out or whatever. But you just reach a point where you’re safer when you know it’s there, even if you might go for years without using it. And I suppose my only advice would be, be organised and make a friend of your local, friendly asthma clinic.

Dee made sure her children knew how to help if she had an asthma attack so that they wouldn’t be frightened and panic.

My children know there are inhalers in the glove compartment of the car. There are inhalers in the bedroom in the bedside drawers and there are inhalers in the holiday house. So my children, my family, my work colleagues, my friends would all know, to the point where they would say things to me, like when I’m packing, “Have you put your, have you packed your medication, have you put your inhalers in?” You know, so yeah.

Yeah, so they’re all very aware about it.

Yeah.

And how great an effort did you put into making them aware of it for you?

Well, with the children it was more that one of those asthma attacks, my, two of my children witnessed and they were very afraid because they, obviously, recognised that mummy was in real difficulties. So, you know, as a way, I suppose, of reassuring them I kind of said, “Look. We can do this if I ever have a problem and I say to you, ‘You need to go to this place and bring me this and then that’s it. We’re solved.’” You know.

So it was a way of actually giving them power to deal with the fear that they had.

But it was also a way of ensuring that if it was, you know, just me and them in the house and I did have difficulty but I, you know, I don’t, I never envisage myself being there again because I think I’m now sort of sensitised to it where it would, I’d pick it up at the first wheeze, the first tightness in the chest and do something about it then.

But yeah, people are, I mean you might think when you’re asking people to look out for your medication they would wonder why but they’re not. People really like to help. They’d rather know so that they can. So I think work colleagues, people who are close to you, you know, are more than happy to be aware and be helpful.

Dee’s advice is’ you can make a really big difference to your experience of this yourself…..working hand in glove with people who know a lot more about it than you do at the asthma clinic’.

And, I suppose the message that I’d be giving to anybody who gets diagnosis of asthma is, within limits, you can make a really big difference to your experience of this yourself. Yeah, working hand in glove with people who know a lot more about it than you do at the asthma clinic.

I mean I know from talking to asthma nurses, specialist asthma nurse and asthma professionals that they could spend all day and every day teaching people how to actually take the drugs properly. A lot of people have the medication and they think they’re taking it but they’re swallowing it or losing it into the air or whatever but they’re not actually getting it into the lungs.

Just be organised about where your medication is and about taking it and you know, don’t suffer in silence. You know, if you feel that you’re breathless or you feel it’s stopping you doing things, get out there and find yourself a an asthma clinic near you and go along and make friends with them and listen to what they say because it might all sound a wee bit kind of precious and picky at the start but they know what they’re talking about. And use whatever resources you can get at on the internet or reading or talking to other people but I think just if you can have an attitude that your asthma is there, you can either manage it or not manage it and managing it to within whatever level is obviously, going to be better for your quality of life.