Generally what happened was, my asthma came about in the summer and tapered off towards the end of the summer and was nonexistent through most of the winter until sort of the end of the spring time. At which point I was told that it was hay-fever related. And ever since then, over the years it’s got better and got worse, its fluctuated without the need of sort of apparent sort of any reason. But it’s always stuck to sort of about mid June to mid August, I’ll get asthma and it will be at dawn and the dusk. So during the middle of the day it’s probably fine. But as soon as the sun rises essentially, as soon as the sun rises and the morning when I’m asleep I have difficulty breathing, I have to use an inhaler. I usually try and use the, the brown inhaler sort of a month before I know I’m going to get the symptoms, so you know, May. I start using it then and try and use it all the way through. I’m probably supposed to use it on an annual, you know, all the time, but kind of when it goes away you think you don’t need it. So I stop using it when my asthma stops and then I start using the brown one when it kicks in again the next year. And use the blue inhaler as and when I need it. So it’s quite mild.

I’ve never had an asthma attack as such. You hear about people have like a heavy asthma attack and not being able to breathe at all. Mine is just annoying. You know, it will sort of graduate up to the point where it’s just uncomfortable and without an inhaler that uncomfortable feeling lasts, you know, it could be a, you know, a couple of hours. But using the inhaler will stop it and until the next either dawn or dusk when it comes back on again. Or exercise during the summer as well.

Will make it worse?

Yes, but that’s usually a strange one. I’ll exercise for say ten minutes and also running for ten fifteen minutes and I won’t have a problem but as soon as I stop my asthma will kick in and then I have to use the inhaler and then I’ll be able to carry on again.

And that’s a little device that allows you to take a puff of dispensed medication and that would be my daily dose and in the normal run of things, I’m either taking nothing because I’m doing good without it or I feel I need some help and taking a dose of that in the morning. The next step would be that I’m not finding that that’s enough and I’m taking a dose of that morning and evening.

If I then get into a situation where I feel asthma has cut in the sense that I am breathless and it’s limiting my activity I would keep my reliever close. Chances are I would never really need to use that reliever during the day, very very rare. It would probably be in the sports bag and used to take a puff before going into swim or take exercise. And I would up that Accuhaler dose if I felt that I had a sniffle or a cold or my breathing was compromised. But if I get to the point where I’m upping the dose I’ve normally, by that stage, phoned the practice nurse or the or the asthma clinic and said, Look. This is what I this is where I’m at, yeah. And they would, you know, chat it through with me and normally say, Well, if you feel you’re doing okay with that do that and if you’re not then come in and see us. But again, it could be, that’s a once a year.

I do now self manage the condition. I’ve only been doing that about two and a half years, but I find that helpful. Partly because I don’t need to go to the doctor, because I’m confident enough to manage it myself. If I think I need help then obviously I go back. And I do occasionally. But generally I’ve found it a positive thing to do. As I say partly because I don’t need to go to the doctor, partly because you feel as though you’re more in control of your own life which is good.

And actually, since I’ve been doing that, I’ve probably had a somewhat better quality of life. It’s not sort of a set change but I think it’s been positive in terms of my own health outcomes.

I measure my peak flow, that’s the volume that you’re able to inhale and exhale. I measure that usually three times a day and keep records of it, I usually know if I’m not feeling well I can tell that my asthma is deteriorating or it’s bad, obviously because you’ve got the symptoms, but that’s an objective measure of the point I ought to be steeping in with more treatment.

And I think it’s possibly of some help to the medics if I have to go back to them I can give them a record of what’s been happening recently. Also long term I can track what’s happening to my peak flow and long term unfortunately its deteriorating but to some extent you would expect that. It’s a normal ageing process, at least to some extent.

Yes, so I measure my peak flow and use stronger medication, oral steroids. The brand name, I think it’s the brand name is prednisolone. It’s widely used to treat this, this condition and other things too.

And if my peak flow shows that I’m sort of 20% below what I ought to be, or below my sort of personal best in terms of peak flow output then I start using prednisolone. At the moment I use six tablets a day 5mgs so 30mgs a day in total. Theres some debate as to whether or not that really ought to be stepped up to eight. But the jury’s out on that. And I’ve got to say that usually is effective after one to two weeks of that sort of treatment then I do usually start to respond and my breathing and other symptoms, my breathing improves and other symptoms start to decline.

I have learnt usually successfully, how to differentiate between as exacerbation of asthma and a chest infection. If I have a chest infection I need to use antibiotics as well. The symptoms are actually quite similar but the stuff you cough up, the mucus you cough up is a different colour. It’s usually a creamy colour if its asthma and a sort of darker greener colour if you have got a chest infection. So if theres darkish, greenish stuff coming up then I use the antibiotic. It’s a broad spectrum antibiotic called Amoxycillin. Part of the penicillin group I imagine. And that usually does the trick.

I thought I was doing most of the things I should be doing anyway, so I do, I mean one of the things that both consultant and the GP said is to keep yourself as fit as possible, which I, which I do. I go to the gym – but – things like mountain climbing and walking are now, well I walk but I can’t climb mountains any more, I get just too, too breathless with it kind of thing.

So since then I’ve taken the brown inhaler and the blue inhaler and then I see the doctor every twelve months, or I can go more regularly if I need to. And then I was put on another inhaler at my next visit called Serevent, so I have to take that daily as well.

And then I went for a flu injection about eighteen months, two years ago, it was during the swine flu period. And I went for this injection and the nurse who did the injection, said, Have you had an asthma check recently? and I said, No, and she said, Well, would you like to come in and I’ll give you one?

So I went in, and in fact just before that, that year, which is about two years ago, I’d also had a chest infection, and then I’d had to go back again because I couldn’t stop coughing. It was like, I was eating dust all the time. So the GP had put me on a dose of steroids – a different GP had put me on a dose of steroids at that stage. But in fact the nurse did another test and my breathing was kind of worse than ever, even though I’d been put on these steroids, so I went back to the doctor and I was sent for another chest x-ray, just to make sure it wasn’t my lungs and it wasn’t, it was the airways that were obviously the major problem. And then she put me on some tablets [laughs].

But in all fairness to the doctors they allow me to control my own medication, so I have like a baseline of medication but I can go above that, I can kind of take the tablets, take the steroids, do what I think I need to do when I need to do it, kind of thing. So I don’t have to keep going back to the doctor every time I have a deterioration.

Do you stay on the same medication?

I do yes. I mean sometimes I put one of the steroid inhalants up but at the moment I just say on the same medication but supplemental with presnosol tablets.

And what are those for? What are those prednisolone

That’s the steroid tablets.

Oh I see. And so do you take them every day?

No that’s what’s called the second line medication.

Yes, I’ve heard of people having that when they’ve got an infection or bad cold or something they can’t shift.

Yes.

But you take it generally when?

I would take it when I’m vulnerable and my asthma’s bad.

When you’re vulnerable. Hm.

I’ve got an emergency supply upstairs.

Oh right.

And I take antibiotics as well if I’ve got a cold.

So are you able to regulate that yourself and decide when and what to take?

I don’t like doing that with steroids because they’re such a dangerous drug really. So I’ll phone the doctor and I’ll say, I feel I need to start the steroids. And then hell say, Well come in. You know, come in tomorrow, but take eight today.

So you work quite closely with your doctor. It sounds like you’ve got a good relationship?

Yes.

Is that somebody that you’ve had continuity with over many years or ?

Yes, ever since I came to [place] yes. I found him by accident, because the first week I was at work I became quite wheezy and somebody said, Well theres a surgery round the corner. And I just liked them from the minute I went in.

Hm. Oh that sounds like it helps. And the asthma nurse. Do you see her as well as the GP?

I see her as well the GP.

And what kind of thing happens when you go to see the asthma nurse?

Well she does a peak flow. Peak flow reading. She just asks about the drugs. Checks to make sure that I’m still using the inhalers correctly. Checks to see if I’ve got an asthma plan. Does all the right things really.

And what is in your asthma plan?

Just sort of increase the, the first line would be increase the steroid inhalant, and if it goes down further by x% take the steroid, see the doctor, if it falls down there, call an ambulance.

So it’s a kind of written plan of what you do in different circumstances.

Yes.

So how confident do you feel about that kind of, the support network that you’ve got around monitoring of you asthma?

Oh I’m very… I think it’s one of the best, the surgery and the, in this area is excellent to be honest. I’ve never had such good treatment.

I actually had an attack, I had, because of getting severe coughing, I started to have chest pains and of course they couldn’t rule out the possibility it was a heart problem and I actually saw and got treated by a very well known surgeon in the general hospital local to where to where I live. He said, You haven’t got a heart problem. Your problem is asthmatic. He made a referral to this clinic, this respiratory clinic in [locality] and that’s how I got to see Dr [name], who was an actual asthma expert and also saw the nurse, who was an asthma clinic nurse. And it’s through that referral I got the proper treatment that I should have had when I first started.

And what was that three years like before that?

I was doing what I could, but I have to be honest I wasn’t taking it seriously. I wasn’t taking my medication as regularly, because I thought well I don’t need, I’ll just take it when I need to, and that’s, foolishly, I was very lucky that nothing more serious happened, but yes, I wasn’t taking it I was taking it when I thought I needed to, not regularly respecting it, and treating as seriously.

So would you have been less likely then to have taken the preventer and?

Yes, yes.

Okay. And did you feel like, did you feel in control of your asthma before you saw the?

No. I didn’t fully understand what controlling asthma was. I didn’t fully appreciate the seriousness and it was only through a) meeting the nurse, b) becoming a volunteer for Asthma UK that I fully understood how serious it could be, and it brought home to me how lucky I guessed I was that I didn’t actually have something really bad during those three years, when I wasn’t taking it seriously. And wasn’t actually respecting that I needed to take the medication even when I didn’t think I needed to.

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 were 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.

My asthma has worsened a little bit but because I’m at the time of my life where I’m going through menopause and I’ve recently been advised to stop using HRT, which I’ve been using for over fourteen years. It’s really hard for me to work out what’s going on with my body. But what I do know for sure is that I’ve got to try and look after every aspect of myself, my mental health, my emotional health, my physical health. And try to find a way forward where I don’t have to make too many compromises.

Where are you at now with your medications being monitored? Are you still seeing a consultant…

Well…

..in the Respiratory…

I haven’t seen a consultant for over a year and the way that it was left I could ring the department if I felt that I needed to see somebody. And thereve been times in the last few months where I thought Well maybe that’s what I need to do. And then I’ve changed my mind because my symptoms come and go. And what I feel I don’t have, is I don’t have any kind of benchmark of understanding whether my symptoms are under control or not. And that’s the kind of information that that I feel I need to discuss with someone. What happens is that I might have a bad week and think Right, yes. I need to make that phone call. Because I feel, I need and want to talk to a consultant. And then the symptoms will improve and I think Well actually maybe I am managing. So I’m really unsure.

Recently I’ve found out through reading Asthma UK information leaflets that actually it’s the care I’ve received is actually not so good. So I would say take advantage of the information about best practice that’s available through Asthma UK. Read that, think about your own experiences and then if you feel that you’re not receiving the, the level of care that reads like the best practice then talk to your GP, talk to your asthma nurse if you have one and just ask questions. Now, I haven’t quite got to that stage yet but I’m just about at the point where I feel I know that I’m dissatisfied with my experience and I’m just trying to work out what I’m going to do about that and how I’m going to handle it. But I’m sure that if It’s happened to me it could well happen to other people.

So it’s a good idea to have a general idea of what the best practice is.

To, what the best practice is and aim to find ways to get that for yourself.

And which aspects of best practice do you feel have not come into play for you?

Oh, I’ve had no kind of regular reviews, no kind of monitoring on how I’m getting on after the first twelve months and [aeroplane overhead] I’m sure my consultant had the best of intentions when he said, I’m going to trust you to get in touch with us if you feel you need to talk through what’s happening to you. But, either, and I consider myself to be someone who’s quite assertive outside the kind of health area but it’s just so difficult to know whether I need help and what kind of help I might need. So I think in, in looking back at it now I think it would be much wiser for there to be a regular system of recalls, at least once every twelve months and that’s not my experience

It’s a routine I follow. I don’t risk my treatment, you know, I don’t miss taking my inhaler morning and night. That’s just so important, it’s just part of the morning and night routine, before you clean your teeth, you take your inhaler, breathe in, wait for ten seconds breathe out, if you need another dose you take it. And that’s been, you know, sort of, and I know it’s worked for me. So I just hope that anybody who is watching this and is worried, it’s worth just beating it. It’s a long term, at the moment a long term and what they call a chronic condition which I hate, I hate the terminology, but it doesn’t mean to say that it must rule your life.

I think I understand my asthma now, and it’s like when I was ill on Saturday I knew, you know, how much I could take of that environment before I’d got to remove myself from it. So I think it’s, I think the lessons I’ve learned are never to take it for granted. I mean I’m going to a friend’s house for overnight next weekend and theres several friends going, and they were talking about sort of who’s going to sleep where, and I knew they’d got cats, so I just said, you know, I don’t care what I sleep on, but I prefer to sleep in an environment where the cats so don’t spend a lot of time. So it’s actually just planning. It’s being practical and common sense about what you do and where you go.

I think more people can get it under control. I mean, unfortunately not everyone can keep it under control, but and we all, I don’t worry that there won’t be a situation that I can’t manage, as long as I always have the inhaler, and can always get to a hospital. I mean I know when I need to get to a nebuliser or to, you know, to A & E for help.

And, as long as, and that’s why I left this party early on Saturday because I thought you know, it’s a boring leaving a party early but it would be even more boring if I ended up having to be called an ambulance and everyones night gets ruined. So it’s learning to look after yourself really.

What do you think will happen if you do not manage your condition?

It’s, it, well it will be very uncontrollable so like you wouldn’t be able to do a lot of things like walking up steps, walking down the street, going to the shop whatever. You wouldn’t be able to do that because you would just be so much out of control. You could have an asthma attack at any time and constant asthma attacks can lead to, you know, anything like could lead to like even something really bad, you know.

So it will just deteriorate?

Yeah. And just eventually just be uncontrollable.

I think I have always had a positive attitude towards doing things but since. Like from the start it is always hard to build that and as long as you get it going then it’s constantly building, constantly making you being able to do all sorts of things really which you never thought you could do. And yeah, so if, if you can build up a positive attitude then theres nothing really you shouldn’t be able to do.

What factors do you see have influenced that and helped you to develop this positive attitude?

Probably parents would be one main thing. Just supporting, supporting you, saying that you can do things. And school would, is a ok factor if. Well they, they, they do like push you into trying to do sport but sometimes they can push you too far which is when you really can’t do things. When you really are feeling bad they will still push you which isn’t great but if they push you and you are feeling fine then you will gradually build that attitude again. Doctors as well. Doctors telling you that you are, you are fine to do things makes you, makes you feel better about it.

I think a positive attitude is one big factor that, that is a difference between people with asthma. Because people who do have that positive attitude can, can live a normal life that they want to. But not having that attitude just, just makes you think, you know, How, what am I going to do. I’m not going to be able to do anything in life now knowing that I’ve got this. So I think the positive attitude is a real big, big factor with, for people with asthma.

Okay can you tell me what an Asthma Care Plan is? What kind of things?

Right its monitoring how your breathing is. And you have a peak flow which is a sort of a cardboard tube and you have a little sort of nozzle attached to it, and you have to take a deep breath, and then blow out, and it’s the blow out that is measuring the peak flow.

Okay.

And in the basis of my good peak flow is 550. If I’m doing a blow out and it goes to 550, because there is a little red shutter on the actual cardboard trigger moves as you blow out.

Okay.

And as you blow out it moves along certain dotted lines and it’s in, I think it’s in hundreds. So mine is 550 is the best one, so I know if I’m doing that, I’ve got no problems. I’m breathing fine, everything’s okay. And then, with the care plan, I now know that if I go to 330 I blow out, normally it’s the best of three blows. If I go to 330, take it seriously, call the paramedic or an ambulance to take me to hospital, because I’m not breathing out properly enough, theres something stopping, and that also, I have an indicator when I take my Salbutamol spray, like Ventolin or Salbutamol, if I take ten or eleven or twelve, up to about fifteen puffs, within a space of an hour, then I know that combined with the peak flow, serious. Don’t hesitate. Call a paramedic.

And do you keep this, do you have to do it regularly? Is it like every day? Every…?

Ideally you should do it at least once a week.

Once a week.

But I now can recognise my own signs without having to do the peak flow on a regular basis.

Okay.

And on that basis as I said, I take my preventer, which is a Acuhaler, 500 mg Acuhaler. I take that every day irrespective so, and I know that my trigger time or my worst time is between September and March. So I know I can actually take extra. I’m normally two puffs a day, twice in the morning, twice in the evening. But if it gets worse, I take four puffs in the morning, four puffs in the evening of the preventer to actually make harder, stronger control because I know then, I’m learning my worst time, have the triggers cold and damp I’m just being more extra careful.

If I have any doubt, I will take a peak flow, but it’s now becoming, it’s a good, that’s nearly, yes, fourteen years now. So it’s a good fourteen years I’m starting to learn and be able to, you know, I don’t know everything, I would be the last person to say that, but I’m now beginning to know my body, and know myself and on that basis and how on a good day, how things are, and how on a bad day what I need to do to prevent it.

So yes, so yes, when you’re in early stages of it, yes, its recommended to do the peak flow at least once a week, and to monitor it and to monitor when it’s low, when it’s low, what are the factors that are affecting you, so that you get to know you get a picture and then through that you can develop it, and grow and then through that you can sort of learn yourself what’s a good one, and what’s a bad thing for you. What to stay away from. What you can do.