Susan

Age at interview: 31

Age at diagnosis: 18

Brief Outline:

Susan, age 31, was diagnosed with asthma at 18. She is white British and single and enjoys a career as an academic researcher. Susan had hay fever as a child which became more severe when she was at secondary school and she was diagnosed with asthma. She has periods when her asthma is well managed and stable, but sometimes, especially if she gets a cold or infection she has to increase her medication until things are back on an even keel.

More about me...

Susan had hay fever as a child which later developed into asthma. Initially she was given a reliever inhaler to use (Ventolin) when symptoms appeared, but as time progressed her asthma became worse and she was prescribed the brown preventer inhaler in addition to the blue one. Over the years since she has had asthma Susan has been able to manage and control her symptoms to a large degree and is able to recognise when she needs to adjust the dose of inhaled steroids to combat more severe symptoms. At one point she found it difficult to walk any distance without feeling breathless and was using the Ventolin reliever inhaler quite a lot. She was then prescribed a second (green) preventer inhaler to use alongside a daily tablet that is often effective with allergy related asthma. She now only uses the blue reliever inhaler when her asthma has flared up. This generally is when she has over exerted herself, or if she has a cold or flu. In winter she can find it difficult to recover quickly from colds and can find herself with a lingering cough that is hard to shift.

The main triggers for Susan’s asthma are cigarette smoke, over exertion/exercise, and cold weather. With the aid of the written care plan Susan is able to largely manage her own symptoms, and she feels well supported by the asthma nurse and GP at her local surgery.

“I have long periods of really good control where apart from taking the regular medication you can almost forget about it….. and then I’ve got sick or something’s happened and it’s gone downhill and…… they change your drugs around and make them ….choose drugs that work better for you”

Susan uses a spacer but says some of them are very large. If you have to use it when you are out in public it can make other people curious about what you are doing. [AUDIO ONLY]

I think the spacers are kind of, they’re good but they are still quite bulky.

The big spacers, I’ve never been given a big spacer by, I’ve got friends that have them and if anybody gave me one I wouldn’t use it.

Because it’s just too huge. And you couldn’t carry it around. Sorry.

And but the little one is quite good but it is still, it is quite bulky and I know it’s a lot better when you take the Ventolin through it. I mean, you can feel it’s a lot better but it’s kind of, you can have a Ventolin thrown in the bottom of your bag and nobody kind of looks askance because lots of people have asthma and just have a Ventolin thrown in the bottom of their bag. If you’ve got a Ventolin and a spacer…it’s kind of, there’s kind of this, because not everybody has spacers, and they tend to just give spacers to people who really need it so everybody’s like, “What’s that?” “Why do you need that?” And…

And it makes you a bit more conspicuous?

Yeah. And when you take it people, people aren’t, I think people are just still not used to seeing spacers being used and so when you take it it’s like, “Whoa, that’s some weird device you’re using”.

And then you feel you have to explain.

And then you have to explain it when you’re still breathless which is not ideal [laughs].

Is that relatively new then, these, the spacer…

I think the little ones are.

I mean, the big ones I know they, they’ve had for quite a long time…

If you’re having a really bad attack, I mean, certainly for me, if I’m having a really bad attack I can’t breathe in very far. And so the drug doesn’t get far enough down.Whereas with the spacer you, because you don’t have to take that really deep fast breath, which is what I struggle with when I’m really tight.

You can kind of, you can take a number of smaller breaths and it doesn’t, or you can take like one slow deep breath.

Susan’s asthma nurse prescribed her some preventer tablets to try and said they work well for some people but not for others, but in Susan’s case they were very effective. [AUDIO ONLY]

When I saw the asthma nurse she said, “Oh it’s you know you’ve got a bit worse again.” And they gave me a tablet as well then which is not a steroid, it damps down the immune system a bit so that you don’t react as much too allergic triggers. Because I already had hay fever and eczema she said, “Well you’ve probably got some allergic component to your asthma so this one might work.” Because she said, ‘It, in some people it works really well and in some people it’s completely, it doesn’t do anything.’ So just kind of like fingers crossed will it work for me? But it was really, really good.

And so I still take all of those. So I have the, the three inhalers and the tablets [laughs]. But it does work so I don’t have to take very much else. And I don’t use my blue inhaler unless I’m ill. And it’s a bit of a pain taking them all but at least you don’t have to worry about anything. Yeah so that’s kind of where we are now.

So those tablets you take daily?

Yeah.

Right.

Yes they’re once, once a day. You take them at night.

And did you say they’re non steroid based?

Yeah they’re like a, an anti-allergy. They’re not antihistamines but they damp down a particular part of the immune system...

Susan has the flu vaccine each year: ‘having flu on top of asthma isn’t much fun’. [AUDIO ONLY]

Most of the things for me it’s just making sure it’s, you know, it’s properly controlled with my medication and things like, you know, having, having my flu jab so that I’m less likely to get flu, because that’s a really bad… you know, I have had flu once when it was a strain that wasn’t in the jab it’s just really bad luck, and I was really ill. Which kind of underlined for me how important the flu jab is. Because sometimes you think, “Well…

Hmm, is it doing…

...you know, does it make a difference?” But, yeah, having flu was definitely not fun with asthma on top.

And it does seem to work most years.

Susan describes how her symptoms start with coughing and tightness. It can be difficult to think straight when she is trying to concentrate on her breathing. [AUDIO ONLY]

A lot of the time with me it starts, either I just start coughing or it’s like a bit of a tightness in my throat, like your throat is getting smaller. So I don’t tend to start wheezing until quite a lot later on until it’s quite bad. And then if I take my inhaler then it’ll just clear up quite easily, usually. But then if it gets worse it’s, it’s kind of like you’re trying to breathe through something really small, like through a straw or something. And it feels like there’s something that’s stopping you kind of breathing properly, like opening and closing your lungs.

So it’s kind of like you can’t, you just can’t get enough air out.

Like you can breathe in some, like mostly OK but then you just can’t breathe out properly. And it’s just, it’s really exhausting.

And I tend to find that I kind of, I stop thinking completely straight. I think as I’m thinking so much and I’m worried so much about my breathing that I can’t cope with other things so I can’t, I can’t always explain what’s going on and I can’t always work out what words I need to use. So I can kind of get half way through a sentence, if I’m trying to explain what’s happening to someone, I might get half way through and I just can’t remember the word that I’m after or I can’t remember where in the sentence I am because I’m concentrating so much on breathing that the rest of the things are just too complicated. 

Susan has had several changes of medication over the years. She has periods when her asthma is well controlled but at times it has got worse and the GP has given her different inhalers to try. [AUDIO ONLY]

So I had hay fever. I was diagnosed with when I just finishing primary school, just starting secondary school. And then about a year after that I was having hay fever kind of breathless kind of symptoms all the year through so mum took me back to the GP and they said actually as well as hay fever you’ve got asthma now as well. And at that time I just had the blue inhaler, the reliever. And I didn’t use it hugely. I only really had to use it when I doing sport at school. And the reliever they gave me the first time, it worked but it made me dizzy at the same time.

So after a little while they switched me to another one which didn’t make me dizzy. But occasionally I would only have the old one with me and then I kind of rather than taking my inhaler and carrying on with sport, I’d have to take my inhaler and then sit down because although I could breathe again, I couldn’t stand up safely [laughs].

Like you’re disorientated.

But... so I only had the blue inhaler for quite few years, about five years. And then I started having to use it more. And that was when they started giving me the, the regular brown inhaler, to prevent the attacks and that works really well. And then that was pretty sable for awhile. And then when I was doing my A-levels I got a really bad chest infection. And I don’t know what happened but it didn’t look quite like a chest infection to the doctors and so they didn’t know what was wrong with me for weeks and weeks. And I was just off, off school because I was so ill. But they couldn’t work out what it was because it didn’t sound like a chest infection when they listened to it.

And then after a certain point it obviously did sound like it and they were, yet they gave me antibiotics and that cleared it all up. But after that I had to have another inhaler as well so like the, the green one which they give you, you have it every day as well as the blue one, as well as the brown one. And then that worked really well for another few years. And then a few years I had a really bad period where even though I was taking all the medications that had used to worked, I still was needing my blue inhaler all the time. And I had to basically use it just to walk across town which was really, was really frustrating... because I cycle everywhere and I couldn’t cycle at all. And when I saw the asthma nurse she said, “Oh it’s you know you’ve got a bit worse again.” And they gave me a tablet as well then which is not a steroid, it damps down the immune system a bit so that you don’t react as much to allergic triggers. Because I already had hay fever and eczema she said, “Well you’ve probably got some allergic component to your asthma so this one might work.” Because she said, ‘It, in some people it works really well and in some people it’s completely, it doesn’t do anything.’ So just kind of like fingers crossed will it work for me? But it was really, really good.

And so I still take all of those. So I have the, the three inhalers and the tablets [laughs]. But it does work so I don’t have to take very much else. And I don’t use my blue inhaler unless I’m ill. And it’s a bit of a pain taking them all but at least you don’t have to worry about anything. Yeah so that’s kind of where we are now.

Susan manages her asthma well generally but there have been times where she has had flu or a bad chest infection and she has had to make several visits to see the GP or nurse in order to get things back under control. [AUDIO ONLY]

I’ve had flu, I’ve had flu a couple of times and that really messes it up horribly because it’s just, because obviously, you know, your breathing’s affected by flu anyway…and then on top of that any infection will spark off my asthma and then on top of that, you know, I’m stressed and I’m not, not very well in general and that will make my asthma worse. And so it really can go downhill quite badly and a couple of times because of that I’ve had to have steroid tablets or I’ve got an infection on top of something, it’s like an infection where I need antibiotics. And so then you can end up like going back and going back and going back because, you know, you went back and they said, “Oh well, let’s see how it goes”. And then it got worse, so you went back and they said, “Right, OK, let’s give you some antibiotics and some steroids”. And then you take those and you think, “Well it’s definitely getting better but I still can’t breathe properly”. So you go back again and they give you maybe, they say, “Oh well, it sounds like the antibiotics have worked but your, but your asthma’s still bad so give you some more steroids”. And then, and you kind of keep going back every week for, you know, maybe three or four weeks and then eventually they say, “Right, OK, let’s see how this goes”. And it kind of stabilises. But it can feel a bit like you’re bothering them [laughs]I mean, I, they don’t, they don’t make it feel like that but it can feel like, back to the doctor’s again.

So would you normally like, if you have, were going through a period like that where it was all a bit up and down, would you normally make the appointment to see the GP or would you go in and out to see the asthma nurse?

It depends. The asthma nurses usually can’t do the, if you think you’ve got a chest infection it’s usually better to go to the GP because the asthma nurses will usually refer you to them anyway. If you go and see the asthma nurse and the asthma nurse thinks you’ve got a chest infection she’ll usually get the GP to look at you anyway.

So often I just go straight to the GP or I’d have a phone consultation with the GP. And then, that’s often what I do actually, is I ring them up and say, “Can I have a phone consultation?” 

Susan explains how having an action plan enables her to manage things herself, but also helps her to know when to seek further help. [AUDIO ONLY]

Is there much sort of fiddling around with the dosage of the drugs. I mean, how much is there?

There is quite a bit actually [laughs] I mean, you, I mean, obviously with me it’s gone up over time as like my asthma’s just generally gone worse but when you get, like say in winter if I get a cold then they give you an asthma plan... and so you know, you know, OK I’ve got a cold or I’ve done, you know, something’s happened and I’m just a little bit worse, you know that you can just, OK you increase this medication to that level and see how that goes for a few weeks. And then if that works and it clears, you know, and it, it copes then you can reduce it down again. You don’t have to even go back to the surgery because they know that that’s what they’ve agreed with you. And so they’re happy for you to do that kind of on your own if you’re happy to do it. I mean, it, it’s really nice because they’re sat, they’re kind of like, “Well, if you’re happy doing that you just do that and you just call us when there’s a problem”. But if you’re kind of not sure you can just ring them up and say, “Well, this is how I’m feeling, I’m not sure whether I need to increase that one”. And they’ll go, “Yeah, let’s try it for a week” of “let’s come in and have a listen”.

So it sounds as though you work quite closely with the, the asthma nurse…

Yeah.

...and are able to get the support you need when you need it but also…

Yeah.

...be a bit, quite...

It gives you…

...self-managing yourself.

A lot of control and it means as well that if you kind of know that there’s a point where, OK this is the point I can go to and if that’s not working that’s the point where I need to see the GP or see the asthma nurse, and it kind of, it makes it so that you don’t feel like you’re bothering them... because you know that there’s this written down agreement that this is how far you go and then beyond that you need their help. And so it kind of feels, you feel less guilty going in and going, “I need help”, because you’ve got this piece of paper that says you need to come in and get help.

Susan had an asthma attack when she was working and felt embarrassed at being the centre of attention. [AUDIO ONLY]

And so if I’m stressed and I have an attack like, I mean, I’ve been working a couple of times and I have my inhaler but I needed to kind of sit down and stop. But I was doing something where I was meant to be walking around and so I kind of called in and said, “Well, you know …” kind of like, because it was over a radio system and so I was like I really don’t want to advertise to everybody on the radio system that I’m having an asthma attack right now. So I was like [siren] “Is it OK for us to come back for a welfare break?” And they went, “No you’ve not been out long enough, you need to do your full, you know, you need to do a longer shift before you can have a break”. And I was like, “I need to come back”.

So, I mean, we were working in pairs and my colleagues went back on the radio and said, “No, I think it is absolutely imperative [laughs] that that we come in for a welfare break right now”. And luckily the people that were, that were on the radio, they kind of went, “Ah, right OK this isn’t just …” you know, “you being lazy, there’s some other thing that you don’t want to put over the radio that means you need to come back”. Which was, I mean, it was good and bad because it, it did mean that people knew there was something up but they didn’t know what it is was. Which is a bit annoying. And it meant that when we got back to the base everybody was like waiting and going “Are you OK?” And it was, that was kind of nice but also I just wanted to be left alone a bit [laughs].

You don’t really want all that attention.

No, I didn’t want everybody kind of crowding round me. I just wanted to sit down, take my inhaler, get my head together…

And then just get out again. And everybody was like, “Oh, are you sure you’re OK?” I said, “Yes. Leave me alone”.

So do you find you’re often, you know, so if people know that you’ve got asthma or see you having a bit of an attack, do they get very kind of …

It depends…

...careful about you?

People are generally, I mean, people are generally really good I find. Sometimes it’s annoying, sometime people are kind of, sometimes it can feel like being crowded.

A bit too much?

But I guess that’s better than people ignoring you [laughs].

Susan explains some of the difficulties when you apply for travel insurance. She advises people to shop around. [AUDIO ONLY]

The only thing that is a bit of an issue is if you want to go abroad and getting travel insurance. If you’re on more than two inhalers it can be really difficult to get travel insurance that covers you because I, all the cheap ones that you find on the comparison sites they have exclusions Asthma is always of the exclusions. And you ring them up and they’ll say, “Oh yeah, if you, if you’re on more than two inhalers then we won’t cover you”.

And because I’m on three inhalers and a tablet, that’s four different medications which they count as really high risk. Which is kind of crazy because if I only took two of them, if I just decided not to take two of them I’d be much more of a high risk. Because if I take them all I’m actually really stable. But if I didn’t take two of them [laughs] then you could guarantee I’d have an attack.

So would they insure you but with that as an exclusion? Or can you not …

Yeah. Well, yes, they would but they kind of say, “Well, if, if you have any treatment that’s related to your asthma”, that’s like if you broke your leg and then because of the pain you had your asthma got flared up they wouldn’t cover you for any treatment they gave you like if they gave you some extra oxygen. Even though the thing that caused the problem was the broken leg if it then affected your asthma they wouldn’t they wouldn’t, they would pay for the stuff that was just the broken leg but they wouldn’t pay for the additional asthma stuff.

It’s quite confusing then?

Yeah, it’s really …

Have you ever, have you found ways round it?

Yes, there are special insur, there, there are some insurers So it’s, basically what it comes down to is the cheap insurers won’t even touch you The kind of the big name type insurers will insure you but you sometimes have to, well you always have to pay more. And then there’s like specialist insurers who again you’re paying more but they’ll cover you [siren in background]… I mean, I, I have my insurance through, I ended up paying like for one of these bank accounts that you pay a certain amount each month and it comes with free travel insurance and because you’re paying quite a lot for the account... the travel insurance is quite good. And it does include some health conditions and, and my asthma is covered under that. I mean, to be honest it’s the only reason I have it because it’s actually, it’s no, it’s no more expensive than if I got it separately and there’s a couple of other benefits with it so it’s worth it for me.

Susan says, ‘You can live a normal life with it. It doesn’t have to rule your life’. Her advice is to go back and see the GP if you are still getting symptoms regularly, and be aware of your triggers. [AUDIO ONLY]

I think the thing is you can just, you can live a normal life with it. It doesn’t have to rule your life. And even though you might have to be on quite a few different medications to control it you can actually get quite good control where you’re not getting symptoms all the time and if you are getting symptoms all the time then, you know, you, you should go back and talk to your doctor because there’s probably something they can do. And just kind of, you know, be aware of your triggers but you can kind of still do stuff.

Sounds like you have to kind of really know yourself and also …

Yeah.

… be able or prepared to work…

You kind of have to…

.. Hand in hand with the doctor and the asthma nurse…

You have to be a bit kind of proactive and take a bit of control of it. But if you do you can just not have it interfering too much.

Susan thinks chat forums can be reassuring because you can hear about how other people have dealt with things. They can answer questions you may have forgotten to ask the GP.

I mean, they’ve got quite, their website’s got quite a good, kind of just generally information but they’ve also got these forums. I’ve not used them, I’ve not posted there a lot but particularly when sort of things are changing or I’m maybe being given a new drug or it’s getting worse or I don’t know quite what’s going on, and kind of going on there and it’s kind of, it’s quite comforting because there’s lots of people with similar problems who’ve maybe tried the same drugs and they’ve got nurses as well that post there. So like you can post a question and a lot of the answers will be from other asthma sufferers which is really nice but also they’ve got nurses who answer as well. And so you might get responses from sufferers that are all about like how it feels and how, how they experience it and then the nurses might come in and say, “Yes, and you know this is the sort of thing that your doctor might do and this is what you can expect”. And so you can get those…

It’s like it adds an extra layer….

...kinds of things.

...to what you get from going to your GP practice?

Yeah, and it’s kind of, it’s not got that element of bothering anyone. And you can also, because you can search the forums so you kind of like, sometimes you can get an answer to a question by finding someone else that asked the same question. And then you can just, like read all the answers to that and read what people said and what people found. And sometimes that’s enough to kind of answer the query that you had. Like, you know, I’ve been prescribed this new drug, you know, how long is it going to take to work? Or, you know, what sort of things might you expect?

And it’s really good for things like that I think.

I think the thing is if you can find somebody that’s kind of had a similar problem to you and, you know, maybe, maybe someone who was where you are, maybe six months ago and then you can see where they are now after six months and you can say, “Oh actually that’s, that’s the sort of thing I can expect” Or if you’re going to be on a new drug or something, you know, some other new type of treatment you can see how other people found it, you know. Was it really difficult to take? Did it have horrible side effects? You know.

And like really silly things like, that you forget to ask the doctor like how long is it going to know, take before I know whether it’s working or not? And I always forget to ask the doctor that and I get home and go, “Oh, how am I, you know, they said to come back if it’s not working, and I forgot to ask how long it should take”. And you think, “Well I can’t really ring them up for just that”.

So you think, “Well, maybe I can find out”. And then you find out that everybody’s saying, “Oh well, you know, it started working within two weeks”. Or, “It started working within three weeks”. And you think, “Well OK, so if it’s not working by like three to four weeks then it might be worth going back to the GP”.

And so it’s kind of like the little questions that you forget to ask, sometimes you can find people that either have asked them and somebody else has answered or somebody’s kind of put something up about, you know, when they had this drug and how it went. It’s like the tablet that I’m on, it’s one of those ones where everybody says, oh it’s either, you know, it either does absolutely nothing if you, you know, if it turns out that you don’t have a big allergic component to your asthma then it just doesn’t do anything. Or if you do have an allergic component it’s like miracle drug.

And, and that was really interesting to kind of, you, you, you saw all these people go, “Well it didn’t work at all for me but, you know, my mate or my, you know, my brother or whatever it was an absolute…” you know … “marvel”, And, you know, “It like changed our life”. And stuff.

And so it’s really interesting to kind of know, oh actually, you know, that it, if it doesn’t work for you it’s kind of, well you’re just one of those people it doesn’t work for.

And knowing kind of what to expect is really useful.