Melissa

Age at interview: 37

Age at diagnosis: 16

Brief Outline: Melissa, age 37, was diagnosed with asthma at age 16. She is white British, and lives with her partner and two children who both also have asthma. Melissa remembers always feeling breathless and wheezy. At first she was upset by being diagnosed with a chronic condition and knowing that she would have to take regular medication, and as a young person feels she wasn’t very vigilant about using her inhalers, but as she has become older she feels more accepting of her condition, and more confident in her ability to self-manage things.

More about me...

Melissa was diagnosed with asthma when she was 16, although she recalls that she had always had symptoms but that they hadn’t been recognised as asthma. Her mother’s boyfriend had asthma and had said occasionally that he thought it looked like Melissa might be asthmatic, but her mother was quite resistant to the idea and thought she was all right as it was ‘normal’ for her to be breathless and feel tight in the chest quite frequently. One day at school she fainted, and so went to see the doctor for a check- up, at which point the doctor picked up on her breathlessness and did some tests to establish that it was in fact asthma.

It took quite a while for Melissa to come to terms with the diagnosis of asthma because she had to try several different types and strengths of medication before she found the right combination of inhalers and dosage, and she was also struggling with the whole idea of having been diagnosed with a chronic health condition as a teenager. At that time she found it restrictive and wanted the problem to just go away, whereas in fact at first she had to keep returning to the doctors so that they could establish what the right dose and type of medication would work for her. Initially she found that the brown preventer inhaler made her feel shaky after taking it which she said could feel quite scary at that age, but gradually that settled down and she became accustomed to using it. Melissa recalls that having asthma, and using inhalers could be things that other young people might tease or bully her about, so she tended to keep quiet about it and used to try to use the inhalers in private when nobody could see. At school Melissa tried not to let her asthma get in the way of things and apart from not being able to participate properly at sport did not feel that she was overly restricted.

For a time Melissa found that she was able to manage her asthma successfully and things were under control, but about five years ago she noticed the medication was having less effect and she was prescribed an extra and higher strength inhaler to use which upset her as it made her feel conscious that her asthma had seemed to change and worsen. She has found it frustrating when things have changed, as it means having to get used to different medication, and experiencing more symptoms until the right new dose of medication is established. She also recalls that when she was younger she wasn’t always disciplined enough in taking the medication regularly and would sometimes miss several doses of her inhalers, which would make her asthma flare up and become worse. Part of this might have been to do with wanting to be doing other things and forgetting to use the inhalers, but she also recognises looking back that she felt frustrated about having been diagnosed with asthma and was perhaps acting out a sense of denial about it. Now that she is older she feels she has more understanding and ability to take a more structured and routine approach to taking the medication and is able to see how important it is to use the preventer inhaler even when you are feeling well. Nowadays Melissa has a regular annual asthma review with the asthma nurse at her GP surgery, and if she is having any problems will make an appointment to see the asthma nurse for a check-up. She feels now that her asthma is being monitored well, in comparison to when she was younger when she feels she was left to get on with things herself without much help or input from health professionals. She says that at the time she was diagnosed nobody showed her how to use the inhalers correctly, or checked her technique. Now that she is more experienced she realises that this is very important, and can make a big difference.

More recently things have improved somewhat and she has gone back to using two lower dose inhalers again, but has always found she has needed to use the ventolin (blue reliever) fairly regularly, and ensures she always carries one with her wherever she goes.

The main triggers for Melissa are dust, and cold weather. When she is outside in cold weather her chest will feel tight and she can become breathless quite quickly, so if she is out shopping or walking she may have to use her blue inhaler a couple of times to relieve the symptoms.

Both of Melissa’s children have asthma and she sometimes feels guilty about having passed it on to them. Her son has severe asthma and has been hospitalised several times, and her daughter’s asthma is more manageable. She recalls how scary it could be to see your child unable to breathe and having to make a very young baby take the medication can be both difficult and upsetting.

The GP tested Melissa’s breathing after she fainted in PE. She was surprised to hear she had asthma, though her mum’s boyfriend had been suspecting it.

I didn’t actually pick up I had asthma. I was living at home with my Mum still. Obviously because I was only, I was about 15, 16. So I was living at home with my Mum. And it was my Mum’s boyfriend at the time kept saying to my Mum, “Oh I’m really worried, you really…” Because he had really bad asthma, really bad. And he kept saying I’m really worried about her, please take her to the doctors and get her checked out. And my Mum was sort of like, “Oh she’s okay, she’s okay.”

What sort of things was he worrying about? Actually how was it…?

Because I used to get out of breath very, very quickly, and the dust in the house used to make me very breathless and very, I just didn’t cope with the dust at all. If anyone disturbed it then I’d be coughing and unable to breathe and so it was quite hard, but I just used to, it was normal for me, because I couldn’t remember a time not being like it.

And then my Mum kept saying, “Oh no, she’s fine. It’s you know, she’s always been like it. And she’s fine.” And then I had a, I fainted. I was doing PE at school and fainted. And obviously had to go to the doctors for a check up for that. And...

I saw a registrar doctor, and he picked up on it a little bit that I was quite breathless and not right. And he said, “Oh I’d like to do a couple of tests.” And I sort of like went, “What do you mean?” I was a bit, you know, don’t like the sound of this. And he said to me, “Oh I think you might be asthmatic.” And I said, “Well, what’s that?” Because I hadn’t, even though I knew of it, because my Mum’s boyfriend had it, I didn’t really know a lot about it, so I was quite, oh my God, there’s something wrong with me!

So the doctor said, “Oh it’s just where your lungs are not working the way they should be. But if it is, we can get it sorted. It’s not a problem.” So I was sort of like, “Oh okay then.”

So he did a couple of tests. He made me go up and down the stairs in the doctors surgery and I was like really embarrassed because there was all these people in the surgery and I’m having to go up and down the stairs and I was, “ooh, ooh, ooh.” But I couldn’t breathe. I just got so out of breath, and really tight chested, and he said, “No, you’re definitely asthmatic. We need to get you on some inhalers and see if we can get this better for you.”

So I got the prescription for the inhalers. Went home and sort of like went, “Mum.” And she went, “Oh.” And she was quite shocked and her boyfriend was like, “I’ve been telling you for how long? And if you’d have listened this would have been sorted out a long time ago.”

But the doctor had said to me then, that he felt with how bad I was it had been going on for quite some, some years, and I sort of like said, “Well funny you should say that, because I’ve been getting very out of breath whenever my Mum dusts.” And he went, “Hm, yes, that’s all part and parcel of it."

Melissa struggled with trying to find the right medication and getting used to using inhalers when she was first diagnosed. Looking back she thinks it’s very important to make sure you ask for help until you get the hang of things.

And it took about a year to get it properly under control. And I had to try lots of different inhalers and I found that really, really hard going, because I just, I was struggling with the fact that I had been told that there was something wrong with me in the first place and then to try and adapt and take the inhalers and get used to taking them and when I take them and how you take them, and so that was sort of like another thing I was battling with, and then even when I did take them they didn’t work. So I’d then get upset because they weren’t working and I didn’t know why they weren’t working and was it because it was me not taking them right? Or was it just…? They just weren’t working. So that was, that was really hard and I struggled for about two years I’d say, just coming to terms with it, dealing with it, and accepting that was the way life was going to be.

And I was backwards and forwards to the doctors a lot, just trying to get the right inhalers that actually worked.

My message to somebody who’d just been diagnosed would be always ask if you don’t know. I never did I was so scared, so frightened and I felt so alone and blamed myself. And nowadays with the support that there is out there, there isn’t any reason to really feel like that I don’t think now. Because the doctors and the nurses they will never not answer your questions. They will always make sure if you need to know something that you know it. And if you’re not sure on taking your inhalers always say to them, I’m really not sure, could we just go through that again please. Because yet again I didn’t and I, I do feel that at the beginning for me that was part of my problem that I just didn’t know.

Didn’t have the right technique?

Didn’t have the right technique. It wasn’t, I didn’t know if I was doing it right. So yes, always make sure you’ve got enough information to be able to feel satisfied and happy before you walk away.

When Melissa was put onto a higher strength preventer inhaler she felt shaky after taking it for a while but after a short time her body got used to it and the shaky feelings wore off.

All of a sudden I got the stronger ones, but they seemed to give me the shakes. I remember getting quite bad shakes from them. And that worried me. But after taking them a few times and for a little while the shakes weared off.

Was that when you were using the preventer….

And I was fine.

…. as well as the reliever then?

No it was just when I was taking the preventer. When I was taking the blue reliever I was fine. Didn’t have any problems. It was mainly just when I was taking the brown preventer.

So that have been like morning and evening?

Yes, the morning and the evening I was sort of like, I’d taken my puffs and I’d be quite shaky but after about a month of taking it, it settled down and I didn’t get it at all. So it was just, I think it was just the body getting used to it.But it was quite, it was quite scary for someone that young for someone to be taking something and it to have that effect. And you’d not be warned that you might get it. You know.

Oh so the doctor didn’t explain…?

No I wasn’t told that I would, I could at all.

I suppose they don’t want to scare you.

No. No. And it is quite scary really.

Yes.

So and that was when I went onto the stronger inhalers.

Melissa found that after a time her inhalers weren’t working so well. The GP prescribed different ones which controlled her asthma more effectively.

So it was easing it, but it wasn’t controlling it and I was still having really, really bad periods of getting out of breath and I could take the blue one and it would calm it down and it would bring it back to normal but as soon as I started doing anything it would just play up, flare up again. So yes, that’s why I went back to the doctor and I said to him, and they said, “Oh that’s because the inhalers aren’t right for you. We need to change them.” And I was like, “Oh no, please not again. That means I’ve got to get used to a whole new, you know, strength, and is that going to make a difference and, and I was told by the doctor that it shouldn’t because I was already on them.

So and that was when I went onto the stronger inhalers. But then after a little while again, they stopped working, so I ended up having to go on even stronger inhalers and I ended up on instead of a brown one, a purple one and a blue one and I was on the purple one and blue one for years. And it worked fantastically.

And then obviously five years ago or so I ended up having to have them changed again, because they weren’t really working. So I ended up on the purple one. I ended up on a green one which was Serevent and then I ended up on Ventolin as well and the Serevent.

Melissa worries that her asthma could get worse in the future but at the moment she is happy that she is managing her symptoms well.

I always worry that it will get worse. Always. Because I’ve always had bouts where it’s been really good and then it got worse, and then it’s got better and then it got worse. So I’ve always had bouts of it changing. But yes, I always think oh you know, it could come a time when it’s going to get worse. So yes, I’m always worried that there’s going to be a time when I’m going to wake up and it is going to be worse again. But at the moment it’s not, and I’m doing well. So I just…

Keep going?

…live for the moment I suppose and say, “Yes, it’s good today. So we’ll go with today.” And if there comes a time when I need more medication then I’ll go back on the stronger medication, but I’m just enjoying not being on the stronger medication at the moment.

Melissa says that the care she receives these days from her asthma nurse and GP is much better than it was when she was first diagnosed.

Once a year, I go for a full asthma review at my doctor’s surgery.

Is that with an asthma nurse?

Yes, that’s with an asthma nurse. But if I’ve got any queries in regards to my asthma or I just feel my asthma’s not quite right, not quite under control then I can go to the surgery and see an asthma nurse. I just have to ring up and make an appointment. Or I can see a doctor, and they’ll say, “Okay well how do you feel?” And go through things with me. So it’s quite, my surgery, my doctor’s surgery’s very good for that. They’re very on top of it.

So you feel like you’re being looked after?

Oh definitely. I feel like…. I feel more comfortable and feel more looked after now than I did when I was younger. When I was younger I felt I was very much just left to it. Because I never went for what they call an asthma review when I was younger. I didn’t, you know, that just didn’t happen. If my asthma was bad, I went and saw a doctor and they, you know, looked at my inhalers and had a fiddle with them, and off I was packed again you know. But whereas with nowadays because you can pick up the phone and ring your doctors and say, “Oh you know, I’m not quite sure.” They can make you an appointment for an asthma review or just a check up with somebody to check things out. I feel it can be, it’s looked after a lot better now than what it was when I was younger.

Melissa is wary about finding information on the internet and says she only looks things up on a ‘need to know basis.’

Where have you got information from?

I mean I presume they still exist, but there was a group called Action for Asthma or Asthma Action. I can’t remember quite what they were called. I got a lot of information from them in the early days They sent me lots of leaflets and different types of things. So I got a lot of information from them really. And that’s, that’s the only place that I’ve had information from in my younger days.

In my older days I haven’t really seeked any information or anything from anyone. I’ve just, I’ve very much just gone on how I feel.

So no I haven’t really seeked advice on anything or any information should I say where my asthma’s concerned.

So have you ever looked it up on the internet, or anything?

No I don’t like to look illnesses up on the internet, only because I’ve had quite a bad experience from doing that, so ever since I’ve had the bad experience, I just went I’m not going to go there anymore, because you can be told all sorts of horror stories and they can, sometimes be one off horror stories, they don’t actually necessarily be the way it is across the board, but if you read enough of them, then you’re going to start thinking, oh no. That’s what’s going to happen to me.

So you just do it on a need to know basis then?

So I do it on a very much need to know basis, I won’t, I don’t just, yes, no, I don’t like looking anything up on the internet. Unless I’m given a specific website and a specific page, by somebody that I can one hundred per cent trust, I won’t. I don’t like to go on the internet as a rule.

And do you feel that the level of information that you have is enough for you? What you know about it, is as much as you need to, or are there things that you’d like to know about that you don’t know?

No I think for me, what I know, the level of what I know is enough for me. Because I can manage my own asthma and I manage my son’s and my daughter’s without any problems. So no, I feel that the information I got from the earlier days, even though it’s probably all changed by now, is enough to say, “Yes, I can deal with this. This is fine. This is, you know, this is manageable.”

Melissa’s message is ‘always ask if you don’t know’. It’s important to make sure you understand the medication and how to use it.

My message to somebody who’d just been diagnosed would be always ask if you don’t know. I never did I was so scared, so frightened and I felt so alone and blamed myself. And nowadays with the support that there is out there, there isn’t any reason to really feel like that I don’t think now. Because the doctors and the nurses they will never not answer your questions. They will always make sure if you need to know something that you know it. And if you’re not sure on taking your inhalers always say to them, I’m really not sure, could we just go through that again please. Because yet again I didn’t and I, I do feel that at the beginning for me that was part of my problem that I just didn’t know.

Didn’t have the right technique?

Didn’t have the right technique. It wasn’t, I didn’t know if I was doing it right. So yes, always make sure you’ve got enough information to be able to feel satisfied and happy before you walk away.

Melissa says if the doctor gives you time and reassurance it’s more likely that you will feel able to ask for help and information if you need it. People may need to ask the same question several times to feel sure.

I think I would just say, just please make sure you give them that extra time to make sure they are a hundred per cent on knowing everything they need to know. And if they do go away and come back, just give them the same…

Patience.

Patience and understanding as you would have the first time they were diagnosed, because sometimes you can go, okay this is fine, and you can go away and then you can suddenly go, actually I’m really not sure on this. And you go back and then because you’re asking the same questions you’ve asked before you feel that they’re, you’re being judged. So yes, just always bear that in mind really that we’re asking the same question again because we need to know and we’re not sure. It’s not because we’re stupid and we’ve forgotten or any other reason. A lot of the time it’s because we’re just not sure.

Just need a little reminding?

And we just need that bit more of reassurance to back up what you told us before. And I think that’s the key to a lot of things is that if the health profession is more understanding and more helpful and there for you more you’re more willing to go back and ask questions. Whereas if you don’t feel comfortable and you don’t feel you’re getting the support, you’re not going to go back, you’re not going to ask questions.