Alice

Age at interview: 59

Age at diagnosis: 18

Brief Outline: Alice, age 59, was diagnosed with asthma at age 18. She is white British and lives with her husband. Alice took early retirement from her job as a civil servant due to her asthma, and now has to plan her time so that she does not do too much. She thinks it is important for people to be proactive in managing their asthma in conjunction with their doctor.

More about me...

When Alice was 18, she began to feel short of breath walking up-hill and had a wheezy feeling in her throat at night. She was soon diagnosed with adult onset asthma and prescribed Ventolin and oral steroids, and later given a steroid inhaler. Alice says it took around two years to find a drug regime that suited her, and the diagnosis had a profound effect on her outlook on life and what she thought she could achieve. She used to worry about going to sleep and not waking up. Alice chose not to have children partly due to concerns over the effects that asthma medication might have on her children, and also concern that she may not have the energy to be a mother and to go to work. She was also worried that she may pass asthma on to her children. Alice says she experiences great tiredness and exhaustion from her asthma, which affects all aspects of her life. Alice worked for the Civil Service and found them very understanding when she was unwell. In her mid-forties, Alice realised that she was unable to go on working as that used up all her energy, and any free time was spent recovering. She retired on medical grounds, and noticed that her decreased contact with the public meant that she got fewer chest infections. Stress is a trigger for Alice’s asthma, and she is allergic to cats.

Alice visits the asthma clinic once a year, as her asthma is stable. She uses Flixitide and Serevent daily, and has ‘summer’ and ‘winter’ medication regimes, as the cold weather makes her asthma worse. She is reluctant when she has to increase her dose of preventer inhaler during cold weather, but is happy to use her Ventolin inhaler frequently. Alice has a spacer to take her inhalers, but sometimes still gets a sore throat. She has experienced some weight gain, puffiness and bruising from taking steroids, but thinks the benefits far outweigh these effects. Alice says having an asthma attack, for her, includes coughing, difficulty in taking a breath, and a frightening feeling of being suffocated. Due to the fatigue Alice experiences, she has to plan and limit what she does, and often misses out on social events when she is very tired in the evening. Her husband is very supportive, but she recognises that her asthma does have a limiting effect on what they can do together.

Alice used to give talks on behalf of Asthma UK, but stopped doing this as she could not guarantee that she would feel well enough to speak. She thinks it is very useful for people to share their experiences of asthma to find out how other people cope. She feels that it is important to find out as much information as possible on asthma so that it is less frightening. She advises people to be fairly demanding of the medical profession, but at the same time realise that you may have to make some adjustments to your life. She encourages people to be proactive in their treatment, and urges medical professionals to give people the tools and confidence to help manage their own asthma.

Alice was diagnosed with asthma in her early 20’s it took about two years to find the right combination of medication to control it. [TEXT ONLY]

I started to get asthma, just when I left school during the summer of 1970. I went to stay abroad with my aunt by marriage, with my cousin by marriage, it was her mother-in-law we were staying with. And I noticed two things, one: walking up a mountain, I got quite, breathless, which was unusual. I was a much slimmer then and young and thought I was fit, and all so lying down at night, I had this funny wheezing in my throat.

So I was quite puzzled by that and those symptoms continued after I came home. So eventually I went to the doctor and asked what it could be and when I could describe things properly, the breathlessness, and the wheezing, they started investigations, sending me to the local hospital and I was diagnosed quite quickly with adult onset asthma. I didn’t know anything about it at the time, and obviously the symptoms, got worse, that I would have more acute attacks of asthma, breathlessness, and feelings of suffocation. And it took me quite a while to work out a drug regime I was given a Ventolin inhaler quite quickly, and that was useful, and had a few courses of oral steroids, and then eventually was put on steroid inhaler.

And at that time, I was just moving on really from the stage of being at school to preparing for work and I think it probably took me about two years to get a satisfactory drug regime, not because of any lack of care or anything, I think I had very good treatment in London teaching hospitals. I was referred to a very good consultant. They had done all sorts of allergy tests, the only thing I was really allergic to was cats, and I really can't be with a cat, triggers my asthma and is, is quite painful. But it just seemed to take about two years before I got a kind of drug regime that would control my asthma.

Alice feels frightened she may suffocate when she has an asthma attack but knows that the steroid inhalers will usually solve the problem, or she can use a nebuliser if she can’t manage the inhaler.

Can you describe what it feels like having an asthma attack?

Well, obviously, yes, I mean, there's... I would say two or three different things. One is when you suddenly notice that you’re coughing all the time, and I'm coughing because I'm short of breath, but it comes out as needing to cough. Then sometimes I'm needing to cough because mucus has built up and trying to clear that, and that's one of the things that happen, you know, you get the inflammation in the, I suppose it’s the trachea, and also mucus production is increased. And you need to shift that so that you can breathe in or out and the coughing, you know, it’s just uncomfortable and you feel uncomfortable. But I think thanks to the steroid preventers, I don't get the same amount of inflammation, and the absolute worst thing is, when everything is inflamed, your trachea’s closing up, you can’t breathe, and you actually can't breathe. And I think it’s that you can't breathe out but I'm not sure because I've forgotten which, which way, which way it works. But that not being able to breathe is absolutely panic making. And you don't know whether things are going to open up again and you will be able to breathe or whether you will suffocate or your heart will stop. And I always used, also used to worry a bit about brain damage, with the lack of oxygen to my brain, I've given up worrying about that now, but I think it is that sense of, of suffocation that is the worst thing. One could put up with the coughing because, or I could, because I don't feel that's life threatening, but the thing that was so frightening was the suffocation, the inflammation and that's why I think the steroids are such a godsend.

Is it... how easy or difficult is it to use the inhaler when you are in the middle of an attack like that, when you’re not being able to breathe?

Then I would use my nebuliser because and if I was in a very bad state, somebody i.e. my husband could help me set it up but I have a, a nebuliser and have had one for a very long time, but because that's, you just can put the mask over your face and breathe in, that would be easier. If I’m just kind of coughing, I'll just use the inhalers, and it’s quite easy because I think what prevents you from doing things is the panic.

Alice has learned to control and manage her asthma, with the support of health professionals and thinks that must be better than ‘being sort of very passive about it’. [AUDIO ONLY]

People are encouraged to, you know, manage their asthma themselves, self-management, which is my view, absolutely correct. One’s got to work out for one’s self how, how you’re going to live your life, you know, on a daily basis, and take responsibility for it.

And I do try not to do things which wouldn't, you know, wouldn’t make my health deteriorate. Well, for my own sake, but also for thinking well, you don't particularly want to call on, you know, medical resources unnecessarily. I might need them for more important or acute things (laughs). And I, I think, you do have to take as much control as you can and I think psychologically that's better than being sort of very passive about it. But one of the things that has given me confidence to sort of manage my asthma is simply length of time and experience, and I have, I feel, had very, very fortunate medical support, you know, the two main consultants that I've ever been under have, in their time, were both the top person in the UK, and that obviously gives confidence. And then my two GP practices both were, you know, very supportive, and that makes a lot of difference, even though they didn't know the GPs in particular a lot of asthma, their attitude and approach I think was, was very good.

Alice wanted to find out as much as she could about asthma after she was diagnosed. Asthma UK leaflets were a helpful source of information; she now uses the internet. [AUDIO ONLY]

To suddenly find that you’re, you know, at the mercy of something you feel which is inhabiting your body, was very, was very difficult, and it, yes it did, and I didn't at the time have any friends with asthma. So I, you know, I was kind of alone in that and because it sort of developed when I was an adult there, there wasn't really anybody else to deal with it other than myself.

And what kind of sources of information would you have been able to access at that time, would you say?

There were already stuff from, from Asthma UK, so I think I became aware of them quite early on, but that was before the Internet. And they used to send, you know, pamphlets, there must have been a number to phone up and then we had information sheets, and definitely whatever there was available, was kind of flagged up in the first hospital I went to you know, of, of, and I think you know it wasn't called Asthma UK then, it would have been the National Asthma Campaign and Asthma Research Council. So I, you know, got that information as early as I could.

I mean, did it help to have some kind of understanding of what happens during asthma attacks, was that the way?

It felt absolutely crucial, I think, and that is very, very good and although it’s easier to access that information on the Internet, it was there. And I think that, because if you can understand something, it’s not so frightening. 

Alice worked for many years in the civil service but eventually it took its toll and she was retired on medical grounds. [AUDIO ONLY]

I had been working in the Post Office as a sort of interim job. I didn’t have good enough A levels to go to university so I had taken a job in the Post Office while I thought what I should do, and then I decided to apply for the Civil Service, because obviously with the A levels I had you could get entry into that without further qualifications. And at that time, you’re on a probationary period for two years before the Civil Service confirm the appointment as permanent, and obviously one of the things they look at is health and attendance record, and I did have quite a bit of time off and had some problems, still having asthma attacks and getting bronchitis quite a lot of the time, as a result of having an asthma attack. You’re vulnerable when you’re, you know, when you've got your mouth open all the time trying to breathe in or out and in fact my probationary period was extended for six months because of the health concerns. And that is quite an issue for people with asthma, the regularity of attendance at work.

Anyway, I thought my employers were very patient and in the end did confirm the appointment, and that was very good because that meant I had a permanent job and I was also in the Civil Service pension scheme, which was to have significance later on. And I think with the various sort of drug regimes and you know, monitoring by the hospital etc, I managed to keep my sick absence through asthma, or generally, down to a tolerable level for 25 years. But I have chronic severe asthma, so I have asthma all the time, just kept tamped down by the inhalers that I have. And it was very exhausting, if you are always struggling for breath, that actually has an impact on all sorts of aspects of your life. And one of the things which I only sort of saw recorded recently in asthma magazine, is this feeling of sort of tiredness and exhaustion after you’ve had asthma or, and if you have asthma all the time it’s kind of an on-going thing. So there's an impact on one’s stamina.

Anyway, eventually, when I reached the age of 46, nearly 47, I realised that I couldn't go on working because that was the only thing I could do. I would get up and go to work for the week, and I had absolutely no strength or stamina to see my family, friends, enjoy social life. And I thought, I don't want to take the risk that my asthma inhalers will stop working, which had happened to me twice before and meant that I had to have stronger medicine to get back on to a kind of balanced sort of breathing pattern. So, I decided that I would have to give up work and I approached the Civil Service medical advisory service to see if I could get medical retirement on the grounds of my asthma. There, that was a part of the pension scheme, that you can have retirement on medical grounds. And I had a very supportive GP and we also had a very good welfare officer in my Civil Service department who both supported my case, so that the medical advisers recommended to the Civil Service pensions scheme that they should allow me to retire and put in to payment my pension. Which you'll realise with a retirement age of sixty as it was then in the Civil Service, was thirteen years early. That obviously, has been one of the biggest impacts that asthma had on my life, that it curtailed my working life. It did mean, in terms of work, while I was at work, I had to be very cautious about undertaking travelling, for the organisation that I worked for. I felt that I couldn't work as much I would have liked to, and I was always having to be very cautious about my health, avoiding [coughs] people with colds, trying not to have time off. A lot of the time, when I was young, I would have bronchitis and I would just go to work. I would take antibiotics. You can do that when you’re young, but it does take a toll. 

Retiring from work meant Alice could avoid travelling on the tube, and being near people with coughs and colds. Her asthma has improved since she stopped working. [AUDIO ONLY]

What has changed is, by not going to work anymore and not being exposed to so many germs, I don't get the chest infections I used to get, which obviously had an adverse effect on my asthma. So it’s better, living a slightly more isolated life has been better for the control of my asthma because obviously, even with the inhaled steroids, the immune system is suppressed to some extent, so you are more vulnerable to picking up viruses. And it’s not very much you can do to avoid that; simply travelling on a crowded tube , and I used to have several changes on my journey so that I was changing from warm to cold, warm to cold and, and different people, and I think it was because I got viruses that then my asthma was worse. So by having sort of been at home for I think maybe twelve years now I haven't, I haven’t had those infections, and therefore by asthma has been better, even though I have had one or two little wobbles, I have, since the second year after I gave up work, I haven't had to take steroid tablets for instance.

Alice’s husband is very supportive but sometimes she worries about the impact her asthma has on his life. [AUDIO ONLY]

Well, it must be an absolute bore for him because obviously it’s curtailed the kind of activities that we can do. I can’t go out on long walks with him. He has a dog and he's a great walker and it kind of, we have to tailor the sort of holidays that we have now to take account of, you know, my asthma and also I don't drive, so he does a lot of driving for me, taking me to places that I wouldn't be able to get to, either because I'd be too tired or because it’s too difficult, doing things like you know, carrying shopping and in, and in our domestic life, I mean he’ll do things like, when the washing, household washing is ready to go upstairs he carries it upstairs because that's something I can’t really do with my asthma.

So he's quite supportive.

Oh, he's very, very supportive.

But it’s curtailed some of his activities, in a way, I suppose?

I think it’s impinged on some of the things he might like to have done. Though I encourage him to go off and do things by himself, but it definitely, I think you, you never know what you’re going to get in life but it’s nicer to have a healthy, wealthier partner than, you know, one who isn't. And obviously he a must be you know, worrying about as we get older, you know, there might be additional care, caring duties for, you know, each other. So, yes, I think it, you know, it has an impact on him. Not, I think not so much my friends and family, because they're not so closely involved so they don't have to. But, for instance, a lot of my friends, particularly during the winter, they will come here and visit me because they know I can't go out. And that’s, you know, putting them out, I’m very appreciative that they do that, but...

But it’s interesting to hear that people find their way round, you know, so that you’re not just sitting there saying, well, I can't see people.

No.

You can find a different way to manage that.

They do. I think, I think at the moment, the worst impact is that I can't do my full share of caring for my Mum, because she lives quite far away, and I haven't got the stamina to travel there as often as I would like or even to do as much as I would like. And then that means a greater burden is falling, falling on my sister for example. And those are things that you don't think about when you know, when you get a diagnosis of asthma, you don't realise that that's how it could, you know, impact later on. 

Alice doesn’t generally make a point of talking to others about asthma, but she values hearing about how two friends who have asthma cope with things. [AUDIO ONLY]

I have got one friend who has asthma and when we were at school together I didn't know her very well, I only became friends with her subsequently, and it was only a few years after that that I discovered she'd got asthma. And just occasionally we exchange views. Hers is much better controlled than mine. She's a very knowledgeable person generally, so if she ever says anything I always take notice of that. And then an older friend of mine has developed it in kind of later age, I mean, you know, post sixties and we sometimes exchange information about symptoms and also you know about treatments, but generally, I don't talk to people about it.

No, and when you do, when you have done with your kind of friends, what benefits do you think there might be to sort of sharing those experiences?

Shared experience I think is very useful in itself, and you compare your experience or their experience, and you also get tips for, you know, what, what to do or not, or what not to do And also find sometimes if you say, “Oh, well such and such a thing happens”, and the person says, “Oh, yes that happens to me too”, you think, “Oh, good, I'm not such a, like a freak”, you know. 

Alice’s advice is to ‘try to be active… proactive rather than passive, that’s a good motto for anything in life’. [AUDIO ONLY]

Definitely get as much information as you can from all sources, particularly those on the Internet, that's really important. And be quite demanding of the medical services, get the best deal that you can for you. And I think you have to think about it a bit, what impact is this going to have on my life, on the people closest to me, and my wider circle of acquaintances? And accept that you may have to make some adjustments and obviously if it’s a thing like asthma, volunteer for Asthma UK, fundraise for them, do what you can to improving... I think try to be active, proactive rather than passive, that's a kind of good like motto for any, anything in life. 

Alice says it’s good for people to learn how to self manage their asthma, and it’s good for health professionals because in the long run the patient will need fewer appointments and less time with the doctor. [AUDIO ONLY]

I think, definitely encourage people to do self-management and to give them the tools to do it, you know, give them, I don't know, spacers and nebulisers, do encourage them to have the regular checks, you know, because...

...to sort of, you know, keep their asthma under control and obviously they can't learn, you know, a tremendous amount detail about every single illness but if they can have at least have an, have an awareness, and I definitely would encourage most medical professionals to hand over the management to the, to the people with asthma, frees them up for other things and it’s good for the people with asthma.