Eileen

Age at interview: 62

Brief Outline: Eileen, age 62, was diagnosed with asthma in her early 40’s. She is white British and works at a university as a finance officer. She is divorced with three adult children. At first she found it very difficult to manage her life as she suffered from very frequent asthma attacks. However over time she was able to learn how to self-manage her asthma through recognising the triggers in good time and to self-medicate early enough to prevent things from worsening, and nowadays she rarely has an asthma attack.

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Eileen, age 62, was diagnosed with asthma in her early 40’s. She is white British and works at a university as a finance officer. She is divorced with three adult children. At first she found it very difficult to manage her life as she suffered from very frequent asthma attacks. However over time she was able to learn how to self-manage her asthma through recognising the triggers in good time and to self-medicate early enough to prevent things from worsening, and nowadays she rarely has an asthma attack. 

Eileen was diagnosed with asthma when she was in her early 40’s. She had been out cycling one day with her son when she began feeling unusually breathless - she went to see her GP, who diagnosed asthma. This came as a surprise as she had not realised that people could develop asthma at any time in life. At the time Eileen was experiencing a stressful time in her personal life which she feels triggered her asthma and over the next few years whilst she was going through a lot of emotional stress she found her asthma was very difficult to control. She learned how to self monitor her use of inhalers (preventers and relievers) using a peak flow monitor which helped her to work out how many times a day to use them, but spent several years feeling very unwell for long periods of time, and she very often had to take a steroids (prednisolone) and antibiotics in addition to the inhalers. At this time asthma impacted hugely on Eileen’s life and there were times when she said ‘I actually didn’t want to live because I couldn’t do anything’. She found that walking any distance became very difficult without taking a break to sit down and get her breath back, and she would often experience coughing fits at night time when she was in bed that left her unable to breath or sleep, as well as finding some of the side effects from the prednisolone difficult to cope with.

Gradually over time Eileen was able to identify the main triggers for her asthma, which as well as stress included having a bad cold and eating wheat based and dairy based foods. Once she knew what triggered the attacks she began to learn to anticipate when it might be a good idea to either begin taking steroids or antibiotics, or to avoid certain foods that she knew would exacerbate her condition. As well as taking the prescribed medication when necessary, Eileen consulted a Chinese herbalist which she found very helpful as an additional support.

Now Eileen still uses her preventer inhalers regularly, but finds that she rarely needs to use her reliever inhaler as her asthma is well controlled although she says it took about 8 years to get to this stage where asthma no longer dominates her life.

Through her experience Eileen has become involved as a volunteer speaker for Asthma UK and feels it is important to pass on her own experience and the knowledge she has gained about asthma to others.

Eileen felt almost suicidal at the beginning because she was so unwell, but over time she has worked out her triggers and strategies to manage her asthma, and now finds she rarely has to use her inhalers at all.

Over the next couple of years it got very much worse that I was virtually dependent on steroids as well as my inhalers for quite a period of time, and antibiotics because my lungs were getting badly inflamed.

It was terrible. I, I could not walk across a normal living space. I would have to sit down half way and recover before I could go on. I would get into bed and I would have a coughing fit. Couldn’t breathe because of the coughing fit, would get back control, which would be just about getting my breathing into control when I’d have another coughing fit and the whole thing would start all over again. And it really was just, just terrible. I couldn’t really live a normal life. I mean, when my asthma was bad it was just so bad I really, I, actually I didn’t want to live because I just couldn’t do anything.

But gradually over time I’ve looked at it I’ve analysed where my problems are because everybody has a different trigger. I know that certain types of stress will bring it on. I also know that if I have a really bad cold my nose gets stuffed up, my breathing then becomes difficult. I know the kinds of foods that make me worse.

So that if I feel an attack is coming on I will go backwards on these foods, wheat-based products I know make me really bad. I eat wheat-based products but if I feel I’m getting to the stage where my asthma’s getting bad I will cut them out. And also dairy based products, if I have a bad cold so that I don’t make too much mucus and, and try and alleviate some of the problems there. I also then start taking calcium too make sure that I’m not losing the calcium I’m getting from the dairy products.

Over time this, this has helped it, it has worked greatly. And I would have to say that I feel my asthma is well under control. I don’t have to use my medication very much. And it generally doesn’t impinge upon my, my life at all. If it does get bad I will go and get steroids to get rid of that particular bout of it, if it’s really bad but most of the time it’s well under control and I’m having minimal use of my inhalers.

Eileen’s diagnosis came at a time when she was under a lot of emotional stress. Over time she has been able to recognise her triggers more easily.

I went to the doctor and she said, “You’ve got asthma." “Why? How?” You know, I just couldn’t understand why I suddenly had asthma. I’d had nothing before.

But I was going through a very stressful part of my life and it, she said that it was, in the main, stress-related.

But gradually over time I’ve looked at it I’ve analysed where my problems are because everybody has a different trigger. I know that certain types of stress will bring it on. I also know that if I have a really bad cold my nose gets stuffed up, my breathing then becomes difficult. I know the kinds of foods that make me worse.

Eileen is thinking about trying a breathing technique and is also interested to see whether salt pipes could help.

And they’re both very open about alternative medication and when I’ve had some acupuncture on, on my, I had a, a tennis elbow and what have you, they, they were both very for it for that and said in some cases it’s the best thing to do. They also know that I won’t stop taking my normal medication. I’m not going to think I’ve, “This, this will cure me.” It’s something that helps me.

Until somebody can actually prove that there are other things that work… you, I feel you have to continue taking. I’ve heard something about a thing called the Bowen Technique and I, I actually have the contact details for a guy in [place] I think he is. And I will go and have an appointment with him and see because apparently it’s, he’s teaching you, the breathing which helps as well. And I will look into it because I’ve heard some people say that it’s been very good. I’ve, my sister-in-law uses a salt pipe and she was advised to use that by her doctor who won’t prescribe her ordinary medication. She said, “Use the salt pipe”.

It’s something, you know, that has going, been going for a long time So, you know, when she said she’d been given a salt pipe it made sense to me and I have kept meaning to try it. I’ve mentioned it to my own doctor and she said, “Well, you know, try it”. Because she, again she knows I will carry on with my own normal one until I feel...

When you say a pipe though it kind of makes you think of smoking. Is that...

Yes, no.

What, you’re not...

No, they don’t look altogether different from the inhalers. They’re a little bit bigger but I think, I did actually see one advertised which was a travel one which was a bit smaller so it was probably about the size of an inhaler that you could actually carry in your handbag. Because one of the things I always find about the, you know, they give you a spacer to use with your inhaler, well it’s about that long.

I don’t like huge handbags. I, you know, I can’t carry it around with me. They have now come up with a smaller one. It, it’s narrower but it’s still quite big. So, you know, something’s quite...

So that would be quite am attractive idea?

Yeah.

Eileen has a good relationship with the GPs at her surgery but she says she understands that a GP can’t know everything. The asthma nurse has a more in depth understanding about managing asthma.

We have a dedicated asthma nurse and you’re called in every year for a check up.

Has that always been the case or is that a relatively new thing?

That’s a relatively new thing.

Hmhm. And does that make a big, a difference, having somebody that you actually go and see who’s specialised in...

...Yes.

... asthma?

Yes. You know, GPs can’t know everything. My, one of my doctors actually has asthma so she understands. But in general they, they would not have that understanding. They can have a surface understanding of many things and they have things in which they’re interested and have a greater understanding. But, you know, I just don’t expect them to know everything. But an asthma nurse, yes I do expect her to know everything.

Where they don’t have an asthma nurse. It’s as I said earlier, you know, doctors can’t do everything, they can’t know about everything but where you have a dedicated asthma nurse it has got to be much better. But, but I, I have heard of people just sort of being given their medication and told, you know, like - that’s it.

Asthma has not interfered with Eileen’s work. Her line manager has helped by providing her with a parking space close to her office so she does not have to walk too far.

There have been times when the doctor has suggested I should take time off work but my line manager, current line manager, I’ve gone to her and said, “Look, can we get me some temporary parking on site so I don’t have to walk” Because I was sort of ten minute walk from where I parked to get to work, uphill, which is not good when your asthma’s bad. And she’s been able to get the parking people down town to agree to a sort of disabled, temporary disabled parking space. So I can drive onto site, I get into my office. When I’m sitting there isn’t a problem.

So I just don’t move around very much when I’m feeling like that.

So I can carry on working.

Eileen is a member of a group called ‘Speak up for Asthma’. She feels it’s important that people learn from each others’ experiences, and to help doctors and researchers improve care for future generations.

I am involved in two ways. I’m, firstly I was involved as a, a SUFA which means I Speak Up For Asthma. So groups can ask me to go along and talk to them about the work of Asthma UK in the main, so I’m giving people statistics and information that they can find more information that is relevant to them.

For instance, they have a fantastic website which has a, absolutely wonderful children’s area that’s pitched at children They also have an area where people with asthma do talk about how they’re doing with it and carers also talk about how they’re dealing with it.

And I’m also part of the Readers’ Forum, so when they’re having new information coming out it will be sent to me, and, and the others on the Forum and we evaluate the information and send back our comments on it.

I’ve also been involved, they have these big Melas every year, within the Asian community to try and get over the message to them that help is available and they do all these pamphlets in sort of Gujerati and all sorts of languages.

And I’ve been to a couple of those and talked to people.

Is that something that’s that, that that community isn’t quite so good at managing ...

Yeah.

..the symptoms of asthma?

Yes.

Yeah.

Yes.

And what made you want to kind of be so, you know, helpful in supporting in that way? Is that the kind of person you are?

Yeah. I think it is the kind of person. The kind of person I am. I feel it’s important that we give as much as we can so that doctors and researchers can learn and therefore improve, if not for us, for the next generation.