Jane Y

Age at interview: 59

Age at diagnosis: 54

Brief Outline: Jane, age 59, was diagnosed with asthma at 54. She is white British and married with two adult children. She is a retired academic and civil servant. Jane has taken a while to get the right balance of medication and for her to understand and manage her condition herself. The main trigger for her asthma is getting a cold or viral infection. Jane uses a combination of traditional and complementary therapies to manage her symptoms.

More about me...

Jane was first diagnosed with asthma when she was 54. At the time she had taken up running and was training to take part in the Race for Life, a 5 Km run. She successfully completed the run and subsequently went on holiday trekking in the Atlas Mountains in Morocco. However, on her return home when she went to go out running again she found that she was unable to run more than a mile or so before things started to feel difficult “I just felt like my batteries had run out” was how she described the feeling. Her trainer thought her breathing sounded like she was having an asthma attack, and when she consulted her GP and he listened to her chest he confirmed that it seemed to be asthma.

Jane found it difficult to come to terms with the fact that she had been diagnosed with something that was potentially life threatening, particularly as she viewed herself as having always been fit and healthy. Her doctor prescribed steroid based inhalers for her to take, but it took some while to find the correct medication and dose. During this time she found that her asthma was difficult to control and she always felt as though she was unable to breathe properly. Contrary to her perception that asthma was a condition that was easily managed and controlled, Jane found that she was experiencing symptoms every day, sometimes exacerbated by travelling to London for work where she noticed the air pollution seemed to trigger asthma attacks fairly frequently. She was closely monitored by her GP during this time and was able to let him know by phone how she was feeling and if she needed help. She was eventually prescribed an inhaler (red and white stripes) that seemed to work well, and has been using the same one ever since, although before that she tried out numerous different ones that didn’t work so well. She also has a Ventolin inhaler which is used when she needs immediate relief from symptoms.

One of the key things that triggers Jane’s asthma is going down with a cold or bug. During these times she will typically take 4 puffs of her inhaler in the morning and 4 in the evening, but her goal is always to try to gradually reduce the number of puffs she takes so that at times she is able to stop using the inhalers completely. If she gets a cold or something triggers her asthma she will need to begin using the inhalers again, and sometimes is also prescribed steroid tablets and/or antibiotics to help alleviate the chest and viral symptoms. Jane uses a peak flow monitor to gauge whether she needs to take steroid tablets at these times.

As well as taking the regular medication for asthma, Jane also sees a homeopathic practitioner who has prescribed a natural remedy for her to take. Although she knows there is no evidence to suggest that such remedies work, she feels that it has helped control her symptoms and her GP is happy for her to pursue this avenue as long as she doesn’t use it as a replacement for the prescribed medication.

Jane feels that over the six years since she was diagnosed with asthma she has come a long way – from being quite frightened and worried when she was first diagnosed, to feeling that she now has a good understanding and ability to manage the condition herself. Over this time, one thing that Jane has found really helpful has been to keep a journal. It helps her on a number of levels, such as being able to look back at the difficult times and see her progress in recovering, and it also helps sometimes to have an outlet for feeling angry and upset that this has happened to disrupt her life at this time.

Jane says now….. “I’ve reached a stage now where for the most part, for 95% of the time, I am in control of my asthma.”

Jane had trained for and successfully run a 5 km race, but when she went out for a run some weeks later she had to stop after a short time. She felt ‘as if her batteries had run out’.

When I was 54 I’d decided that I wanted to get fit at Christmas 2004 I made the decision I wanted to get fit and I took up running. I had a personal trainer and our goal was for me to be able to run the Race for Life which was in May of that year for, for just five kilometres. But for somebody who’d never done any running it was quite a big goal. So I went training. I lost quite a lot of weight by doing that as well and I felt really fit. And I did the Race for Life and I ran the five kilometres in 26 minutes and I was very pleased with myself. And almost the next day we flew out to Morocco on holiday and spent 10 days trekking in the High Atlas Mountains in Morocco. And while we were doing that the leader of the group we were with said that we would find when we got home that we would feel really fit because being at altitude meant that we would have more red blood corpuscles in our blood stream. So I came home full of enthusiasm and put my running shoes on after we got home, went out for a run and I just couldn’t do it. I probably ran between half a mile and a mile and then I just felt like my batteries had run out.

And I couldn’t understand this because although I hadn’t been running for a fortnight while we’d been in Morocco I had been taking exercise and the leader had made this comment about being extra fit when we got back.

So if I persevere, so every morning I would put my running shoes on and go out for a run it just didn’t seem to get any better. So I contacted the person who’d help me train to run the Race for Life and arranged to go out for a run with her. And we went for a run together and the same thing happened and the only way I can describe is that I just felt as if my batteries had run out. I didn’t feel that I was, well I was obviously breathless because I’d been running but I didn’t feel that I was more breathless than I should have been, no other than usual. I just felt like I couldn’t, couldn’t run another step.

And so I stopped and I said to her, “This is what I’ve been talking about, this is what I mean.”  And she said, “But listen to yourself, you sound like you’re having an asthma attack.” So I rang my GP went back to the gym with her and rang my GP on my mobile phone from there and he said, “You’d better get yourself up here straight away”. So I went up to see him and he listened to my chest and my breathing and said, “Yes, I think this is asthma”. And that was a big shock.

Jane spent months trying out different inhalers to get things under control.

So I started then on a very long journey because as I understand it the way that the, there is a protocol for treating asthma which means that they start with the lowest possible medication and step it up until they find the medication that’s right for you.

So I started with a brown inhaler morning and evening and my blue inhaler. And I then developed what I call my rainbow collection. These inhalers as I understand it have steroids in them and so you have to take them for three or four weeks before they know whether they’re having any effect or not.

So I had my brown inhaler, three or four weeks later I was still not better so I then had a, a pale purple inhaler with a dark purple cap. And the same thing happened. So three or four weeks later I then had a dark purple inhaler with a light purple cap. And three or four weeks later it was still no better. So I then had something that my son always said looked like an ocarina. It was kind of round rather than a long thin inhaler. And that didn’t make any difference either.

So by the autumn I was beginning to feel that I was, I would never be well. I felt like I could never, I, my, I could never breathe properly. And when my asthma was bad it was particularly difficult. I was having time off work and this wasn’t what my perception of asthma had been. My perception of asthma had been that people managed fairly well and then if they have an asthma attack they used a blue inhaler, I’d seen people doing that, and five or ten minutes later they were fine again and they carried on with life. And that’s not how it was for me, I was just having difficulty breathing at some point every day.

Had a very busy lifestyle. Travelled round the country a lot and travelled up to London a lot. And I knew that the air pollution in London was not helping me.

And I knew that at time the, things like the diesel fumes from the trains weren’t, not helping me. And I did go through a point where I wondered whether I ought to give up work because this, this was clearly not doing me any good. And my GP was really helpful. He said, you know, “No, absolutely, we’ve got to get on top of this. And you don’t have to give up work, we have to find a way of controlling your asthma so it fits in with your lifestyle. You don’t have to change your lifestyle, we have to be able to treat this asthma so that you can manage the lifestyle that you’ve always had”. And that was really helpful.

Jane’s asthma is affected when she gets a bad cold.

There are times when the asthma gets the upper hand, obviously. I had a cold in May this year and it yeah it went to my chest and things are bad, I just zapped it with everything. And I’ve got over it much more quickly than I usually do. But on the whole I think I manage it. It fits in with me. And most of the time I, I don’t even think about having asthma.

So I get something like a cold and it goes onto my chest and I get very chesty, I develop a chest infection and then my asthma’s bad. And, and what can happen then is that’s when it can be really difficult to walk say from the chair to the kitchen to make a cup of tea and back again. And my breathing can go from being, when I’m sitting in the chair I can feel absolutely fine. But if I get up to do something my breathing can go in seconds from being as apparently normal as it is now to not being able to catch my breath at all. You know, literally in less than a minute.

It, you know, it just switches. Which is when it gets frightening really. But at that, and that will get better over, so that so... So I might get a cold, it goes onto my chest over a period say two or three days and then over the next week my breathing will be really difficult and I might have four, six of these attacks where I just can’t breathe at all and I have to stop everything and sit down and use my blue inhaler. And in between I’m a bit wheezy and, you know, slow. It’s a bit like, you know, and I was talking about when it started, I felt like my batteries had run out.

So it’s a bit like my batteries are only operating at quarter power. And then over the next three or four weeks it will slowly improve.

It took a while for Jane’s GP and consultant to find the right medication for her. For a while her asthma seemed very difficult to manage, but now she says she feels she is 95% in control of her asthma.

I went to the doctor that day and I said to him, “This isn’t how I felt asthma would be. You know, I thought, I didn’t think I’d have trouble breathing every day and sometimes it would be worse. I thought I’d be OK every day and sometimes it would be worse”. And he agreed that that was how it should be. So they referred me to the respiratory clinic. And I went to the respiratory clinic at the hospital and had to wait two or three months for that appointment. So by this time we’re into early 2006. And I went first and did some tests with, on a bicycle and blowing into a thing that looks like a, the, the extractor tube from a, a tumble dryer and riding a bike with a clip on my nose and things like this. And then I went to see the, the doctor and they did a whole series of tests. And I came home that evening with a new inhaler, a different one again, red and white this time. And some tablets.

And then a month later I had to go back to see the consultant and I was beginning to feel better for the first time. And, and he felt that he felt that I didn’t need the tablets but that I should stay on this red and white inhaler. And I’ve been on that ever since. I don’t take it all the time

Over the years I’ve seen my GP less and less. I hardly see him at all these days really, only if I’ve got you know, if it’s really bad. But I have at least annual contact with the asthma nurse at the surgery. And two or three years ago she told me that I could manage this red and white inhaler myself. So at, at most I take four puffs in the morning and four puffs in the evening but my goal is always to get it down to nothing. And because it’s a steroid I have to do that very slowly. So I, you know, I start three puffs in the morning, four in the evening. And then three in the morning, three in the evening. And, and it will take me anything up to four to six months to get off it completely. So a typical kind of cycle will be I, I have some sort of viral infection, a cold for example, I end up with a really bad chest. I might be off work then for, when I was working, for four weeks or so, it would be really, you know, it was quite debilitating

And I now feel that I’ve reached a stage where for the most part, 95% of the time, I am in control of my asthma. I have, I have my inhaler and I choose when I use it. And I’ve got two inhalers. I’ve got the blue one which obviously I have to use in an emergency but I’ve got the red and white one and I choose whether I think I need to use that morning and evening, just morning, just evening and how many puffs I have. And I know once I start on that I’ve, to reduce it I’ve got to do it slowly. So I manage how I reduce it.

Jane went to see a homeopath who prescribed a remedy. Her consultant was happy for her to try it as long as she continued to take her medication.

I said to him, “You know, was there any point in me going to see a homeopath?” And he was not discouraging. He said there was no research evidence to, to show that homeopathy can help asthma or could help adults with asthma but he said that he had patients where it, it was helpful and where it was helpful it seemed to be very helpful.

So he, he encouraged me and then I, but he also encouraged me to do it via my GP. So I spoke to my GP and, and he also was very encouraging. But the PCT wouldn’t pay for me to go to the homeopathic hospital. So I decided that I would go privately to see a homeopath. And that was another turning point. So when I look back on my asthma, the, the kind of the, the key points have been obviously the, the, that day when I was out running and I now went to see the doctor and I was told that this was asthma. Then when I went to the hospital and they found the right inhaler for me, and then going to see the homeopath. And that was probably about a year after I was diagnosed because time was going by all the time.

We spent a long time talking about me and my asthma and my other medical history. And she gave me a remedy to try. And within a month I was feeling better than I’d felt since that, that day that I was diagnosed. Since the day that I’d put my running shoes on when we’d got back from Morocco and I couldn’t run. And, again, it’s been quite a long story because I carried on seeing her for a year or two and actually changed the remedy during that time and I have two lots of the remedy that I still keep upstairs.

One is a higher strength and I take that if I feel like I’m going down with a bug, because that’s one of the things that triggers my asthma. In fact, that’s probably the key thing that triggers my asthma. And the other one is one that I can just take on a, a, an ongoing basis.

Actually in the last six months I’ve felt so well that I’ve stopped taking it altogether and I keep in touch with her by email and she says that’s absolutely fine, that means that my body’s back in balance. Though I do still take the higher does one sometimes if I kind of get a bit of a dry throat and think, “Oh, this is the start of a cold”, you know. It just seems to work for me. It’s been great.

Is that alongside the other medication? Or do you...

No, alongside the medication. And my GP was very clear when we, I talked about him going to see a homeopath he said he was quite happy for me to do that but on no account was I to stop taking what I was taking already.

When she was first diagnosed Jane’s asthma was unstable for a time, but she was able to have regular telephone consultations with her GP for advice. She says it’s important that doctors listen to you and understand how asthma is affecting your life.

The other thing that he did that was very helpful to me, although I know that other people have a different view, is that we, we set up a system of sort of telephone consultations So he would be in touch with me probably once a fortnight, once every three weeks, every time he put me on a new inhaler he’d ring me two or three weeks later to see how I was getting on. And that worked for me because I was travelling all over the country. So I had consultations with my doctor in coffee breaks during meetings, once when I was on the top a hill in Yorkshire when I was holiday. And that worked really well.

Once or twice when I was really not feeling terribly good he would ask me to go and see him and I would just drop everything and wherever I was and make my way back home and go and see him. As I say, that was helpful.

I would say that it’s really important to listen to your patients. Because they are the experts in how they’re feeling. And to see asthma as more than something that affects our airways. It actually affects us as, as people, it affects our lives. There’s a huge adjustment that you have to make when you’re first diagnosed. I went from seeing myself as a healthy person with no, no health worries and problems at all to somebody who might have an asthma attack tomorrow that they don’t survive.

Or even this afternoon.And that’s a huge adjustment that you have to make. There’s a lot written in the psychological literature about the embodiment of self and so on so I would, I would ask health professionals to talk to us about how it’s affecting us in the round not just how it’s affecting our breathing.

Jane found it helped to keep a journal so she could monitor her progress more easily, and it helps to write down her feelings sometimes.

I kept a journal. That’s always been really helpful to me when I’ve, when it’s been bad because progress and recovery’s been, can be very slow, almost imperceptible and it’s easy for me to feel like I’m not getting better. And I have to remind myself that this has happened before and you’ve got better, so you will get better this time. But if I keep a journal I can look back a week and then I can see, “Oh yeah, this time last week I had real difficulty just walking round the block. And this time this week I’ve been able to walk as far as the shops and back”. And I can monitor the progress much more easily and I just found it really helpful. I also write down a lot of stuff about you know, just how I’m feeling. Because sometimes I feel angry that this is happening to me because it’s getting in the way of me doing what I want to do. So I kind of write some of that stuff down, it just helps me.

And I read a book, a friend recommended a book to me which is absolutely nothing to do with asthma at all It’s called ‘Fracture’ by Ann Oakley who is a sociologist, and it’s her story of what happened to her when she fell and broke her arm when she was at a conference in the States and how the medical profession saw her as a broken arm and not as a whole person. And, and that was some, some of what I was feeling as well, that people concentrated on my asthma and not on me and the effect it was having on me. As I say, my GP was, was very good because he would, he said, you know, “We’ve got to get this to fit into your lifestyle”. The homeopath was excellent at kind of looking at me as a whole person. But reading Ann Oakley’s book was really helpful to me. 

Jane’s husband calms her down and helps stop her feelings of panic when her breathing is difficult.

My husband’s brilliant. He’s extremely placid and I can get, I sit here talking about it very calmly now but I can get very panicky and he just very quietly tells me to stop, That’s his usual thing. So, we’re walking along yeah, just last week we were up in London and we were we were crossing the Millennium Bridge and I started to get a bit, I started coughing and getting a bit breathless so I said could we stop and have a couple of puffs, which I did and then I said, “OK I’m fine now.” He said, “Well I just want to stop and look at the boats, life doesn’t revolve around your asthma, you know” [laughs]. But he will tell me to stop, “Just stop what you’re doing”. And I’ll start to remonstrate with him and he’ll say, “No, stop. Stop talking, stop walking just stop.” “And deal with this”. And once or twice when I’ve got, you know, it’s been a bit more, a bit worse and I say to him, “Do, do you think we should call an ambulance?” “No, you just sit there, stop, use your inhaler like the doctors have told you to and you know in five or ten minutes’ time you’ll be absolutely fine.”

So it stops you from getting that real panic mode?

I hope what is going in...

It’s like your inner voice...

[laughs]

... should be saying to you really. Stop.

I don’t know, I don’t know what’s going on inside for him but externally anyway he’s so, he always stays very calm.

Jane sometimes worries what other people will think. When she went on a group holiday she made people aware of her asthma but said she was concerned that people would think “Oh my goodness we’ve got somebody with asthma, what are we going to do?

I do worry about what other people think about my asthma, you know. So, if I’m having difficulty breathing and I need to use my Ventolin, my blue inhaler, I’m quite comfortable with that. But I worry about what the people around me think. And sometimes people will say. “Are you all right?” And I just say, “Yes”, you know, “Thank you for asking but I’m fine and I’ll let you know if I’m not”.

We go off on group holidays, we’re quite active people. And I worry for the other people in the groups. So I worry for the leaders. When you’ve had to fill in a form where you have to declare any medical history, I’ve just done one this morning, and I become concerned that they’ll think, “Oh my goodness we’ve got somebody with asthma, what are we going to do?” And actually I just want to say to them, I’m fine and I can manage this. And I’ll let you know if I’m not.”You know.

Do you, don’t want to be a bother.

No.

To other...

That’s right.

.. people, or have them have, feel that they’ve got that responsibility.

Yeah.

Yeah.

Yeah.

I suppose that just takes a bit of getting used to, doesn’t it? It, you know, if you’ve gone all your life without having this condition and then...

Yeah.

... all of a sudden it’s there on forms and things and ...

I think I felt quite self-conscious with using the blue inhaler to start with. Now I just do it...thinking, without thinking about it.

Do you think enough is known generally about asthma, that, you know, that people generally, that you come across, know and understand about it and...

No, I don’t think there is. I think people have that perception that I had that it, you know, that it, it’s something that kind of needs emergency treatment always. And it does sometimes, but not always. And people don’t know what to do. So I carry a card with me that I got from Asthma UK that tells people what to do. One of the key things on that is that, that the person should be left sitting up and that you shouldn’t lie them down. Almost everybody that I’ve spoken to about that has been surprised. They’ve said their first reaction would be to lie the person down. Actually it’s the worst thing that you could do...

Is it to keep the airways clear...

Yeah, it’s much easier for me My symptom, my, the most common symptom for me is coughing. Much easier for me to cough if I’ve sitting up...

Right.

... than if I’m lying down. 

Jane thinks it’s important that doctors listen and understand how asthma is affecting your life ‘talk to us about how it’s affecting us in the round’.

I would say that it’s really important to listen to your patients. Because they are the experts in how they’re feeling. And to see asthma as more than something that affects our airways. It actually affects us as, as people, it affects our lives. There’s a huge adjustment that you have to make when you’re first diagnosed. I went from seeing myself as a healthy person with no, no health worries and problems at all to somebody who might have an asthma attack tomorrow that they don’t survive.Or even this afternoon.And that’s a huge adjustment that you have to make.

There’s a lot written in the psychological literature about the embodiment of self and so on so I would, I would ask health professionals to talk to us about how it’s affecting us in the round ... not just how it’s affecting our breathing.