Jenny

Age at interview: 34

Age at diagnosis: 18

Brief Outline: Jenny, age 34, was diagnosed with asthma at age 18. She is white British and lives at home with her parents who help care for her when she is unwell. She has had to retire from her job in healthcare due to her ill health. Although Jenny had her first asthma attack at 18, it was 10 years later at the age of 28 that marked a turning point when she got pneumonia and her asthma became much worse. She now has brittle asthma, and is often in and out of hospital because it can be difficult to stabilise as she can go from being perfectly well, to severely unwell in a matter of hours.

More about me...

Jenny was 18 and on a trip to Lourdes when she had her first asthma attack whilst she was walking down a mountain, and thinks that the extremes in temperatures may have set it off. At the time she didn’t know what was wrong but a fellow traveler who was also a nurse gave her an inhaler to use which relived the symptoms. On her return home she saw her GP who diagnosed asthma and prescribed inhalers to be used when needed. She had asthma attacks intermittently after that time and with the help of inhalers and sometimes a course of steroids or antibiotics was able to manage the condition relatively easily and generally she was well for much of the time. However, at the age of 27 she had an infection in her foot and took a course of antibiotics to help clear it, but a few weeks later found herself feeling very breathless and unwell as she had developed pneumonia. This was to mark the first of numerable hospital admissions, as since that time her asthma has become progressively worse, and is now classed as the more severe form of asthma known as brittle asthma. As things became more severe Jenny was having to take a lot of time off work – going part time to begin with but eventually it was decided that she would be retired on the grounds of her ill health because she was spending so much time at home unable to work.

Last year Jenny had 9 emergency hospital admissions – she can go from being perfectly well to being severely unwell in a matter of hours. She takes a total of 19 different medications each day – some of which are to combat the side effects of her asthma medications - she also has another condition called secondary adrenal insufficiency which means her adrenal glands no longer function due to the large doses of steroids she has to take.

Jenny has many limitations that place restrictions on her life but keeps herself active by studying at home, and doing some voluntary work and she is a very positive person. She has to live with her parents as she would not be able to afford to live alone, but also because there are often times when she would not be able to manage without their help and care. Her illness has therefore also had a big effect on her parents’ lives – they worry about her a lot and sometimes their lives tend to be dominated by hospital visits and admissions.

Jenny is very well informed about her condition and is able to manage her symptoms to a degree, changing the dose of some of the medication or taking extra oral steroid tablets when she can detect changes in her lungs or breathing. As well as colds and viral infections that trigger her asthma, she is also allergic to numerous things such as household bleach or cleaning products, alcohol, mown grass and pollen, changes in temperature and most furry animals. This means that she has to try to avoid situations where she might come into contact with something that would trigger an attack, which can make life very challenging. When Jenny can feel she is getting a cold or an ear infection she knows that it could be likely to result in a stay in hospital to stabilise her condition. When this happens she describes it as ‘living on a knife edge’ not knowing whether she will be at home or going into hospital. Admissions to hospital are often to a high dependency unit where they have the drugs on hand to get her condition stabilised and manage her breathing. She is ‘red flagged’ with the ambulance service so that if she calls it is recognised as an emergency and treated accordingly.

Another difficult symptom that Jenny has to deal with is chronic fatigue which is also a result of the high doses of steroid that she has to take. Jenny would very much like to be able to go back to work in some capacity at some point and is hoping that the latest drug she has begun taking – Xolair – a new injectable medication, may help her to reduce the other medications she takes and could help to keep her condition more stable in time. Jenny feels that not enough is known about the more severe end of the asthma spectrum and many people don’t understand or see it as a disabling condition. 

Jenny has severe brittle asthma but doesn’t let her asthma define who she is as a person.

Asthma is a very small world, word, but it’s a very big condition, and being diagnosed with asthma is not the end of the world. It’s not a death sentence, but it means different things to different people. I mean, for me, asthma is a huge part of my life it impacts on everything and I’ve got various conditions because of other… because of the medications I take for the asthma, but as a big picture, I’m, you know, I’m quite happy, or I’ve, no, I’ve learnt to be happy with the way that I am. Asthma is, asthma it’s an annoying condition because there’s no cure, all you can do is minimise the triggers, minimise what sets you off and then learn to deal with the condition when it does kick off. But it’s so, it has, the emotional impact on the sufferer but also the sufferer’s family, friends, you know, it is quite, it’s quite, it’s a big impact, it’s a big thing. But, again, it’s important not to live it… you know, I’m a person with asthma, I’m not the asthma first.

When she was first diagnosed Jenny’s consultant focused on treating her allergies – ‘he wasn’t as interested in the other things that triggered it like the colds and the viruses and the stress.’

I went to the doctor and they did the, they do your peak flow when you blow in and he looked, you know, he listened to my chest. He said, “Well. There was no wheeze there now”, but you know he did the peak flow and he put, he put me on a twice a day inhaler and then gave me the blue, a blue one and said, you know, “Use this if you get short of breath”, and all, you know, the usual gumph. And then over the next few years I sort of, in the hay fever season I’d be worse but I didn’t sort of think anything of it. If I got a cold I would, you know, I’d have a, I’d have a week on steroids. They give you some oral steroids to take for five days and then, you know, you’d be fine again. And then I got to the point where I was having oral steroids more often.

So it was building up over time?

Yeah, it was, it was gradually getting worse. So my GP said, you know, “I’ll refer you up to the hospital because I think we need to, to look into this further”. So, he actually referred me to an allergy specialist because there was so much of it was allergy related, which in hindsight, probably wasn’t the best because, I mean he was, he was a great, a great doctor, slightly arrogant, but, you know, who was so focused on my allergies and minimising my allergy exposure and yeah, and sort of cleaning my life up so I wasn’t exposed, didn’t, he didn’t actually look at me and how I was living and he didn’t actually look at my asthma which I know sounds really odd, but he was, his theory was if he could limit my allergy exposure then the asthma would sort itself out. But because he wasn’t a chest physician, he was an allergy consultant, he wasn’t as interested in the other things that triggered it like the colds and the viruses and the stress and things.

Jenny, said that if she worried about her asthma the stress and anxiety could make things worse.

One thing I did want to say about asthma and is the, the mental implications and the, and the, how to put it, the effect the brain can have on your asthma.

There’s so much… people don’t realise the... I don’t know how to put it... the, like the stress, anxiety, the psychological, that’s it, the psychological impact or the impact of psychology on your asthma.

So your emotional state?

Yes.

Yeah.

Yeah, if you get stressed… you know, stressed at work, you can do anxious for something, you know, if you’re upset about something, anything like that can set you asthma off. And so many people don’t realise it, and, and then when your asthma’s not so good or your breathing generally, you know, if you’re breathless and then you start panicking, worrying and… getting anxious about it, it just spirals, and I now know that anxiety and stress are one of my big triggers, psychological thing. You know, if I think I’m going to get ill, then I can, I can almost make it, make it happen, almost self -fulfilling because you think, “Oh, I’ve sneezed, I’ve got a cold I’m going to be ill”.

Start to panic.

Yeah, you start to panic and it’s just one thing after another. So you have to learn a lot of relaxation and calming techniques.

Jenny has severe brittle asthma and has many different triggers for her asthma. Sometimes people are surprised that she can have a pet dog.

People are often surprised that I have a dog ‘because aren’t you allergic to…’ I’ve had allergy tests and I’m allergic to anything with fur and feathers but not dogs. The doctors have tested me four, five times because they’re convinced I should be. I’m allergic to everything else, but they’ve decided its mind over matter – my body doesn’t want to be allergic to dogs because I love them. Yeah, it’s I mean, everything I can’t go to my brother’s house, brother and his wife and my niece because they’ve got a cat, but they had the cat before or my sister-in-law had the cat before she married my brother. So, you know, we can’t really ask her to get rid of the cat, but my aunt has always has had cats as well, so I’ve never really been to my aunt’s house because I can’t. I can’t horse ride, I can’t, you know, like birds and that sort of stuff. if I go anywhere, I have to check first if they’ve got cats or – I mean a lot of my friends, we meet up in town or we meet or they come here because I know it’s a safe clean environment. I mean other triggers for me include things like, cleaning products, bleach I mean, I went to my grandmother’s house a few weeks ago and her cleaner had been in and left, left bleach in one of the loos which, you know, is perfectly normal, it’s what people do, but I’d have only been in the house five, ten minutes and I knew that there was bleach somewhere; I couldn’t smell it but I could feel it.

So, my grandmother had popped down to the shop and I was hunting round her house trying to find the bleach ‘where is it?’

And it was in the – in her en-suite and, you know, so I had to flush the loo and get rid of it and then I was fine. But you’d have thought I was mad for a minute, going round the house sniffing, ‘where’s the bleach?’ But I was getting tighter and tighter and I knew that if I could get rid of the bleach, use my inhaler, I’d be fine but if I left it there, I’d have just got worse and worse and could have ended up in hospital.

Jenny’s consultant has prescribed Xolair for her, but she says it can be difficult to get it funded. She looked it up on the internet to find out more about it. [TEXT ONLY]

I’ve recently been started on a, on a new medication, which this year, seems to be doing me an amazing amount of good. It’s a new injection, I have it once a month, it costs a lot of money and the PCT don’t like funding it, but they, they do because my consultant has put forward the case and they do fund it and this year I have only had one hospital admission, whereas, at this time last year, I’d already had five; so, one admission in six months will do me fine, thank you very much. Also my consultant has now said that if I can remain stable for six months, we can A, possibly start reducing some of my other medications but also B, he might even think about letting me work part-time, which is an amazing.. Step forward because I’m 34, nearly 35 and being at home – I mean, yes, I do an awful lot of stuff. I’m studying, I do voluntary work, you know, but the voluntary work I do is basically sitting at computer doing things for people rather than actually going out. So if I’m allowed to start thinking about going to work, it would be amazing.

This injection that I’m currently having called Xolair, they actually have a website, and I went and had a look at it and it’s one, it’s an injection you have to have in hospital. You can’t have it at your GP’s or you can’t have it at home and I couldn’t understand why, you know, and they’d say, “Oh, because you might react to it”. Well then, I went on to the, the website and they’d got in there the research paper, you know, when it was pre-clinical, the drug, and it explained in about how reactions to the drug that had occurred after one or two injections but also after like after 30 or 40 injections.

So that’s why you have to have it in hospital. But the people at the hospital were just saying, “Oh, it’s because of the reactions”, because they’ve just read what it says in their protocol. So for me to be able to go and find it and I then actually told the pharmacist at the hospital about this website and she said, “Nobody has ever told us about that”, you know, they’d, they’d been on training sessions about this drug and you know, and about how to store it and preserve it and give it and whatever, because you have, it’s a, it’s a powder that has to be made up, and it’s all, it’s got quite a complicated way of making it and stuff, but… so they’ve been given all the technical information but they haven’t been given the background.

Jenny has to use her nebuliser on a daily basis because her asthma is very severe.

It’s a routine.

I have what’s called a dosset box, it’s got, I do a week’s medication in it, and I’ve now managed to with a bit of manipulation and a bit of help from my consultant, we’ve got it now that I take medication three times a day, roughly; I take tablets three times a day, breakfast, lunch and bedtime, sorry breakfast, supper and bedtime, and then I’ve got my nebulisers are twice a day. So I try and leave the middle of the day as free as possible. I mean, I still have inhalers and things I can use and all if I need to in the day, but we’ve, we’ve, we’ve manage to, again, it’s part of his helping me become more normal, you know, having more of a life, is we get the tablets at various times of the day so the middle bit is free and but it’s a… I can’t be spontaneous.

I can’t, you know, if someone says to me, “Oh, we’re going out, oh, do you want to stay over?” I can’t, I, because the med, the type of medication I take, I can’t miss a day. I mean, yeah, I do get sick of taking it, you know, after breakfast, ah, I’ll just take my medicine, I jokingly say it’s my second breakfast, you know, all the pills, takes, takes one and a half mugs of tea to take all my pills [laughs] in the mornings, you know.

Gosh.

And then I have the pills I take at suppertime and then I have the ones I have to take before I go to bed, you know, and then my nebuliser.

But things like my nebuliser, I have to buy myself. I’ve got two, I’ve got a portable one that I can carry around in my handbag and I’ve got my big one, compressor one upstairs, that I use at home. I had to buy it and pay for it myself.

Jenny has brittle asthma and can feel a sense of fatigue and exhaustion when she is experiencing an asthma attack.

I can do things, but I get puffed and short of breath and then I go blue and, you know, and I have to be very careful that I don’t get over-tired; it’s getting over-tired makes me, can make me wheeze and also because I’ve been so ill for what, seven years now, I’m actually [coughs] at great risk of ME chronic fatigue because I get sort of over one virus and something else hits me, so and then I get too tired, my body just goes into shut down mode.

And I do have days where I am completely useless, where I just sit on the sofa and I sleep and I’ll wake up, eat something and I sleep again, you know, that’s basically all I, all I can do because my body is either fighting something or it has been fighting something.

I mean, the other week the dog wasn’t well, it was like Saturday night, half-ten, eleven o’clock at night and she needed to go to the emergency vets and I could just not – I’d had a busy day and I just couldn’t do it, I couldn’t get up off my bed to take her so my mum and dad had to take her, eleven o’clock at night and sit there for an hour at the, you know, until midnight at the vets…because I was just so physically tired and then my breathing goes off when I’m tired as well, but that, it’s not asthma breathing then that goes off, it’s fatigue breathing. But anything that upsets your breathing pattern when you are an asthmatic like me, anything that upsets the breathing pattern can trigger the asthma off.

Jenny explains how her asthma has changed and become worse over time. She has developed severe brittle asthma which has restricted her life considerably, but she says most people don’t experience such extreme symptoms.

Over the years, you know, I had occasionally got a bit, had a bit of flare up and would have to have steroids and, you know, just small doses and things. And then it all changed. Well I was about 27; I was gardening and I stubbed my foot on a rose bush, didn’t think anything of it, got an infection in my foot and was on antibiotics – that cleared up – and then a couple of weeks later, I had started like getting these really sort of short of breath and what have you, and it turns out that I’d got pneumonia from the same bug that I’d had in my foot had gone up to my lung, caused me to have pneumonia. I went because I’d been at work and I went to my GP and was a bit short of breath and she sat me down and then sort of listened to my chest and sent me off to hospital. That was the beginning of, well I could be cynical and say the beginning of the end, but since then my lungs have just gradually got worse.

I’ve been in [coughs] intensive care, high dependency numerable times with my asthma, I’m now on so much different medication, I had to… when I… I worked until four years ago and I worked full-time and then I worked part-time, then I worked very part-time and the HR department at work came to me and said, “Look, you’re spending more time in hospital than you are at work, you know, this really isn’t working”. So, I was retired at the age of 30; I have a pension. So at the minute, I don’t work because of it, I moved house or moved areas four years ago with the idea that maybe a different area would help or, you know, try anything. I’ve not been brilliant the last few years ; last year I had nine emergency admissions, you know, blue light ambulance jobs… because I have, I don’t have what – I don’t have simple asthma, I have what’s called severe brittle asthma, which means I go from being perfectly well to terrible in a matter of hours, or I can do. I sort of – I can either do that, where I’m fine and then something will trigger of and then I will just go or it will build over a couple of days and I will sort of try and catch it with all my different rescue medications and things and then I can’t catch it then… but once it goes, it suddenly goes and that’s it. But that’s not what all asthmatics do and so I don’t want to frighten all asthmatics and say, you know, you’re all going to end up going blue round the edges because you’re not, but it’s just what I do.

Now I take 19 different medications a day. Some are for the side-effects of the other ones. I have an… allied? - whatever - a condition alongside my asthma called secondary adrenal insufficiency, which basically means my adrenal glands no longer function because I have had so many steroids. So I have a bizarre combination of two conditions called Addison’s and Cushing’s. When I’m well, like now, I get the Cushing’s symptoms which are the very puffy face, I get very sweaty, I get very hot, I get excess hair on your arms and things, but as soon as I’m unwell, I go the opposite way and I get the Addison’s which means your blood pressure drops, you go slightly doolally, you get de-hydrated, it’s all because of the steroids I take. But if I didn’t take the steroids I wouldn’t breathe so I wouldn’t be here anyway. 

Jenny has severe brittle asthma and is often in and out of hospital. She recalls the first time she went in to A&E as an emergency, but now the hospital staff and paramedics know her and what she needs.

Going into hospital for the first time. We went to A&E because I’d been gradually getting worse… I have to, I have to remember the, the, you know, the sequence of events, I think mum had rung the GP who had sort of questioned her and said, you know, “Have you done this? Have you done that?” And, yes, basically it’s a case of well, “You’d better go to A&E”. So they took me to A&E, as I say, and I managed to pass out at the reception desk because my oxygen levels were so low, and I was just so tired because I had been fighting this for, fighting it for days, not realising how bad I was getting.

And had you been on steroids, at that point, or were you just using your inhalers?

I think at that point, I was just using my inhalers… because I hadn’t realised that I’d got an infection or anything because previously I’d had the infection in my foot, I’d had antibiotics for that.. and was just assumed that I was better and thought the cough was because it was the middle of summer, you know, was it hay fever or whatever… I was having a bit of a cough and stuff. And then, when I say I got to A&E, they just thought that my temperature was very high and I had this infection and they did the x-ray and it was, it was pneumonia in the left lung, and I was in the hospital for ten days with that.

And what took place whilst you were admitted into hospital and what, what sort of things were they doing?

In A&E I had nebulisers, oxygen, fluids because I’d got de-hydrated because I was coughing so much.

What the, do you know what the nebulisers called?

Salbutamol… and Atrovent nebulisers yeah.

So that’s to kind of stabilise you, and so when you were in hospital they were monitoring you and keeping, trying to get on to…

Yeah. The idea is, before you go home from hospital, you have to be back on your normal medication, unless they happen to have increased it or whatever. I mean, it turned out I then went on to a drug called aminophylline which they put straight into your veins and that sort of increases the blood supply to your lungs and it relaxes things down.

Now I have, since being here, I’ve… on my first admission it was all set up for me that now my home phone number and my mobile phone number are red flagged, what they call it with the ambulance service, so if I ring them up, it’s, they know who I am, they the chances are that it’s probably my asthma; if I can’t say much I don’t need to say much to them. They’ll sort of say, you know, they’ll ask you for your phone number, where you are or the location and then often they’ll say “Is that Jenny?” “Yes”. “Is it your asthma?” “Yes”. “Someone’s on their way,” and they sort of say, they give you the usual do this do that, whatever.

So it’s sort pre-set for a priority call?

Yeah.

Jenny often has to go into hospital as an emergency admission, but her consultant, the hospital staff and ambulance crews know about her needs and what works for her. ‘The doctors sort of say, ’oh you come with instructions!’’.

Because I have, my parents, although I live with my parents, and often, well not often, sometimes they’re here when I, when I ring, I’ve previously had respiratory arrest where I stop breathing – I’ve only done it once, I’m never doing it again – but I also get bad very quickly, I go from sort of coping to not coping and my consultant has said you know, “Call an ambulance”, he said, “because if it happens in a car, your parents are stuffed; if you, if it happens in an ambulance, they’ve got the oxygen, they’ve got the equipment, you know”. I mean we were a bit dubious about using the ambulance service down here because we had a bad experience where we used to live, where an ambulance man turned up and basically, you know, inferred that he was not a taxi service, you know, why, you’ve got two cars outside, why couldn’t they take me down? But here they’ve said, ”No, call an ambulance whenever you need to”, and also, when you get to A&E, it’s a lot easier if you go in an ambulance because you bypass reception, you bypass all the people being sick and the people with bleeding hands and things, you know. I mean, the couple of times I have sort of walked in, you know, if I, if mum and dad have taken me down or whatever, they do tend to sort of drop what they’re doing and come and see me, A, because they know me and B, because breathing conditions or breathing problems do get priority. But…

Do you think that’s quite helpful, I mean, I know obviously as the, as the years have gone on and you have had more hospital admissions which obviously isn’t what you plan or, or want, but at the same time, I suppose that means that people are, are familiar with your case and you don’t have to keep repeating what’s …

Yes.

...what’s happened and going over your story, I suppose.

The, ‘Oh God, it’s you again’.

[Laughs]

When you going into A&E; you go in, “Oh, hi Jen, how are you?” Silly question, you know, I’m going blue round the edges, but and also now I’ve now got a yellow community folder which basically is provided by a community matron and in this folder it’s got my management plan, my drugs, all my history and everything in it so I can just give it to the ambulance men. I don’t have to, you know, they will say, what your date of birth, your address, your phone number or any of that, you just give it to them and say, ”It’s all in there, you know, all my allergies are in there, contact details of people, everything”.

Hm, which is probably helpful on two counts because, first of all you’re not wanting to be able to, to have to speak when you’re feeling quite ill…

Yeah.

... but also it just saves you having to go over the whole lot again.

Yeah, it does and also the other thing that I’ve been able to set up since I’ve been down here is I have a management plan written by my consultant because what’s happening was when you go into A&E there’s this text book - sorry, I moved, didn’t I?

It’s all right.

[Laughs]

It happens, people do [Laughs].

There’s this, there’s this text book protocol of how you mange an asthmatic and over the years we’ve discovered, trial and error, what works with me and what doesn’t and my consultant’s view is why re-invent the wheel? So I now have it written down. It says, you know, when Jenny turns up in A&E you should have done this, this and this, so you should do this… clinically reassess then do this and then reassess and do this, you know, and it’s sort of written, it’s written… and it is slightly different to what the text book for the junior doctor says, but it’s what works for me.

And it has helped because, you know, the doctors sort of say, “Oh, you come with instructions”. Fair enough, just do what it says, it’s fine.

Jenny says it’s useful to hear others’ experiences of medication but it needs to be balanced and evidence-based. Well-meaning people may say natural remedies are safer than steroids – but steroids keep her alive.

I think sharing experience is, it’s good because it gives you an insight into how other people have coped with the same thing, but I think it needs to be moderated properly and sort of controlled, in a way, because you do sometimes, you get people going off on a rant about something, you know, “I would never touch this medication again because it does this and this and I would advise anybody not to take it”. Well, hang on, that, yeah that’s dangerous; you can’t just say, “Don’t take your medication”, because it, you know, but if you say to somebody, but if you’ve got somewhere that’s says, “Well, OK, you know, I took this, this medication, it’s given me this side effects, I wouldn’t recommend it, or no, I wouldn’t take it again, but you know, you follow your doctor’s recommendations”… and you know, it’s better that – do you know what, do you know what I’m trying to say?

Yeah, I can see that side of things. Is there, I mean is there an aspect of it that’s helpful, do you think or generally speaking or..?

Yeah, because it proves you’re not alone. If you’re having a sort of, if you’re having a problem with something, you know, an, an issue let’s say either with medication or with your life style or, I mean, I know on Asthma UK there’s a real, forum thread about, benefits and, you know, the current changes in assessment and stuff and you know, different people’s experiences and things and it’s sort of, they’ll sort of you know, somebody will go on and say, “Oh, you know, I had my assessment and I was advised this and …” so they’ll say, “Well, I’ve got maybe, you know, if I did that instead or whatever, you know …”

So there’s lots of practical ways that it can be of help?

Yeah.

Yeah.

But as I say, it’s, it just comes, it’s a case of finding a, what’s the word, a relevant, you know, a reliable source.

Yeah.

You know, that is, as I say, well moderated and, and so… so that you’re getting a well rounded view rather than a, a biased, you know, don’t do this, don’t do that. I mean, the, the classic one that gets everybody riled up are, are steroids. “Oh, you shouldn’t take steroids, the side-effects are horrendous, you know, you should be on as few as possible, blah de blah de blah”, you know, and it’s like, “Yeah, but if I stop taking them I’ll die, because, A, I’ll stop breathing and B, I don’t produce any so I have to..” I will be on steroids permanently for the rest of my life because my body stopped producing the natural version. But I have, I have a friend who is a, a, a holistic therapist and he’s on and on at me about, you know, “You need to – oh, you take far too many steroids, far too many, you know, all your drugs and everything, surely, surely you could be on less drugs? Have you tried this homeopathic remedy, have you tried that?” And I’m like, “Yeah, I know I have a lot of side effects from my steroids and they do cause me problems and I have side effects from the other drugs, but I wouldn’t be here without them”.

You know, you’ve got to find the balance. Yes, I would love to try some of these, but some of the homeopathic stuff doesn’t mix with some of the stuff that I am on and I can’t just say, “Oh, well I’m not going to take that any more”… because the implications are just too big, and I think whilst some of these well meaning people who are on there are saying do this, you shouldn’t do this, you should try this; yeah, but they need to sort of, you know, they are healthy people who are taking supplements and things to make them even healthier. I am a sick person who’s taking medication to survive. And yes, I would love to be healthier and, you know, be able to eat, take whatever oil or whatever they sell there, but at the end of the day…

Jenny has to rely heavily on her parents for support. Sometimes she feels guilty that she is so dependent on them at a time when they should be thinking about retirement.

The big thing I find is the impact not just on me but the other people in my family, I’m as I say, 34, I live at home with my parents because A, financially I’m on benefits, I can’t afford to live on my own, but also when I’m not well, I need someone to help me... and look after me. If I lived on my own, I wouldn’t be able to do half the things that I do because I would have to do all the washing, all the cooking, all the cleaning, whereas living with my parents, we have sort of shared roles. So I can, I do my fair share of bits around the house but I’m not doing everything so I don’t get – because I get very, very tired; that’s a side effect of the medication and the asthma, that I have a real fatigue issue – so if I didn’t live at home with them, I’d have to, I wouldn’t do anything, I’d, by the time I’d done my washing up, my washing, my cleaning, my weeks shopping, whatever, I’d be asleep. I mean, as it is, I have a nap in the middle of the day because it keeps me going. Also, I wouldn’t have my dog if didn’t live at home because, you know, she’s a young dog, she needs two walks a day, minimum, usually three; I can do one a day, but I can’t do more than that. So my parents not only have me at home but they have my dog as well.

It’s knowing, you know, each day, because my condition can change so fast, knowing each day, you wake up and say, “How are you this morning?” And the classic one, I’ll come down and say, “I’m fine.” “Oh, well, what does fine mean?” I say, “Well, I’m fine”. “Well, how’s your breathing? How’s your…” You know, and it’s just like, oh, for heaven’s sake.

Does it get a bit tedious after a while?

Yeah, but I can, I can understand why they do it, because my response, has implications for how they’re going to spend their day. You know.

And what about, generally, about your kind of, your relationships with each other, does it interfere with how you interact with each other, on a general basis?

Yeah, it depends, it depends what sort of mood I’m in, which sounds completely selfish, but if I’m in a quite a conciliatory, you know, I’ll let things flow over my, you know, just go, but other days, you know, red rag to a bull. Dad will say something or mum will say something and I’ll just flare … you know… and I know it’s not helpful and it’s not sensible, and, but it, it’s what happens, you know, and we’ll bicker over stupid things because, you know, that day I’m feeling a bit touchy or … sometimes, if I know I’m not well, I know I’m not doing so well, I get very touchy about people saying, “How are you?” So I’ll go, “Oh, I’m fine”, “But like, you’re not”. “Well, why did you ask then?” You know. Or, “You, you look a bit puffy”. “Well, don’t ask me how I am then”, you know.

Not being able to work is something jenny hates. She misses the people, the interaction and the responsibility. She’d like some sort of a job where she can feel she’s needed, rather than always being the one needing other people.

You have to accept that there are things you can’t do. I mean, yes, I still have days when I rally against it and get really cross and but I know that if I get stressed or cross with myself, I can actually make myself ill.

But yeah, I mean, it’s stopped me working and that’s the big thing, that’s the one that I hate… you know. I mean, I used to work 39 hours a week, do shift work, night shifts, sleep-in, whatever, you know, I was always at work, but you know, I was at work early, I’d finish late; I loved, I like working, I like, I miss the people, I miss the interaction, I miss the responsibility.

And is that something you can foresee in the future will change or are you thinking that that’s how it’s got to be now?

I envisage working part-time somewhere, somehow. I mean, I’m not a career woman per se, but I would like some responsibility in some, you know, and to achieve something, but I’ve had to scale down what I wanted to achieve. I mean, I am currently doing an Open University degree, and I was very focused on doing a psychology degree, but now I’ve, since I’ve sort of learnt more about my asthma and the psychological impact of it, I’m actually thinking, do I want to be in other people’s heads? You know, I always want, I wanted to be a psychologist, I thought well I can do that part-time, I can work from home, you know, it would fit in with my condition. But now in hindsight, I might, hang on, I’ve got enough of my own things going on inside my head.

You’ve got to think about the impact on you.

Yeah.

Yeah.

Would I get too tired, too stressed, too anxious about other people’s problems? I mean, I know when you work as a psychologist you, you have to have your own counselling and your own, you know, you have mentors and that, but I’m just thinking, I don’t think I can … I don’t think that would be healthy for me. So actually now I’m looking at thinking, well OK, well maybe you know, maybe I’ll work in an office and have just a little role, you know, some admin, you know, health admin or whatever, then just have a little role that I can do well in, rather than, I mean, my sister-in-law is mega-career-orientated, you know, works stupid hours, drives all over the country, you know, because she wants to achieve certain things in her career. Me, I think just going to work and being part of a team and, and being, having responsibility and being needed.

I mean, I’ve spent so much time needing other people that actually I’m, I quite like the idea of being needed.

Sometimes people wonder why Jenny is on benefits and can’t earn her own living. ‘If you look at me… I look perfectly healthy’.

This takes me on to one my little mini soap-boxes which is all about the – publicly, the people, like, “Oh, David Beckham’s got asthma, Liz McColgan’s got asthma”, you know, and you, and they’re like, you know, and they’re Olympic sports people or whatever. And they look at me and people say, “Why don’t you work?” “It’s well, because I’ve got brittle asthma”. “You’ve got asthma but you don’t work because of it?” “Yeah.” “But Liz McColgan and David Beckham have got asthma”. So it’s like, yeah, but it’s a very little word and it’s a very big condition and I am one end of the scale and they are the other and I would give anything to be their end of the scale but, you know, be able to go out and work and you think – my other soap-box is I get so cross when people say, “Oh, benefits scroungers, why don’t they go out to work?” I mean, if you look at me, you know, all my limbs work, I can move round, I can… I look perfectly healthy. But what I say is my power supply doesn’t work, you know. 

Jenny explains what benefits she is entitled to, but feels the way the system is organised is unfair.

I get incapacity benefit and disability living allowance. Because I get incapacity benefit I’m not entitled to anything like income support or anything like that because apparently, technically I get too much. They have this, this lower threshold beyond which, well, this threshold says this is how much you need.

So you can’t get any more support if you get above that threshold. Well, it’s just like I’d like to see someone to try to live on that. ..It’s you know, it’s ridiculous. I’m actually waiting for a tax rebate because they decided to try and tax a load last year and they used the wrong tax code, so hopefully…

Tax the benefits?

Yeah.

Oh no.

That’s silly, I know, and then they tax your income… they tax your income support, oh, sorry, your incapacity benefit, so you’re just like, so the government’s giving it to you and taking it away from… you know, it’s just like, why?

Doesn’t make a lot of sense?

No, so they’ve because they got my tax allowance wrong or something, my tax code or something, so apparently I should be getting a rebate at some point. But disability living allowance is non-taxable and it’s none… its non- means tested. The idea being that it pays for your, it makes up the gap between your disability and a normal person. So, I mean, for me it’s like it pays for the car. But yeah, it’s just, it’s meant to counter, I mean basically what, I mean, some, some disabled people find it insulting because it’s basically saying, you know, give me this money and your normal, you know, this is how much we think it means differently for you to be disabled.

It’s kind of trying to put a monetary value on something that really you can’t necessarily…

Yes, but having said that, it’s money, it helps, as I say, pays for the car, it you know, like, because I used to use it to pay for my own car and then I discovered, then I found out about the Motability, and it’s brilliant. I mean, I buy a new car every three years, it pays for the insurance, it pays for maintenance, it pays for servicing, all I do is put fuel in it, basically.

So that is quite a help…

Yeah.

… for you.

Oh, yeah, and you get road side assistance as well, you get AA and stuff, which is great because people, for me, my car is my lifeline. I don’t have the energy or the puff to walk to the bus stop, to get the bus into town, to, you know, if I did that I would be knackered before I even got into town … you know. I can hop in my car, park in a disabled space, right in the centre of town, or park on a double yellow line in front of shop in, you know, if I’m going somewhere smaller, and, you know, it means I can get out and about.

If I didn’t have the car I’d be housebound because it’s sort of half mile to the bus stop or, you know, even, even on a good day I can get quite puffed out doing that, as I say, if like today they’ve mowed all the lawns around here, you know, the council have done all the lawns, I’d never make it to the bus stop.

Jenny’s best friend has asthma too. It can be good to have someone to ring up and talk to, who understands what it’s like having the condition. [TEXT ONLY]

My other best friend is also asthmatic, she lives where we used to live and she’s the same, is she a little bit older than me, and she’s got, but she’s got two, she’s got twins, who are now 18 because she had them quite young and they were actually what kicked off her asthma. She’s never blamed them, but you know, she wasn’t really asthmatic before she got pregnant. But she’s brilliant, I mean, she’s a Salvation Army minister, so she’s and she’s just so chilled and you know, sort of God’s got a purpose for her, so… but, and she’s brilliant too because you can – you need somebody who you can ring up and say, “I’m having a really bad day” or, “Oh, for heaven’s sake, I’m puffed to put me socks on”, you know, and you’ve got somebody who can understand.

Who knows what you mean.

Yeah.

Jenny has to rely heavily on her parents for support which can also have a big impact on their lives.

The big thing I find is the impact not just on me but the other people in my family, I’m as I say, 34, I live at home with my parents because A, financially I’m on benefits, I can’t afford to live on my own, but also when I’m not well, I need someone to help me and look after me. If I lived on my own, I wouldn’t be able to do half the things that I do because I would have to do all the washing, all the cooking, all the cleaning, whereas living with my parents, we have sort of shared roles. So I can, I do my fair share of bits around the house but I’m not doing everything so I don’t get – because I get very, very tired; that’s a side effect of the medication and the asthma, that I have a real fatigue issue – so if I didn’t live at home with them, I’d have to, I wouldn’t do anything, I’d, by the time I’d done my washing up, my washing, my cleaning, my weeks shopping, whatever, I’d be asleep. I mean, as it is, I have a nap in the middle of the day because it keeps me going. Also, I wouldn’t have my dog if didn’t live at home because, you know, she’s a young dog, she needs two walks a day, minimum, usually three; I can do one a day, but I can’t do more than that. So my parents not only have me at home but they have my dog as well.

There’s so much stress involved in being chronically sick. People don’t realise it but it’s like my relationship with my parents, it’s changing all the time because, you know, when I’m well, we’re three adults living in the house …when I’m not well, you know, I’m the daughter who needs caring for, I mean, my dad, I love him dearly, but he can be a little over-protective at times because he’s like, “Oh, you don’t want to do that, you don’t want to end up in hospital “ If I hear that one more time, I’ll, you know… “Don’t do that, you’ll end up in hospital again,” oh, for heaven’s sake.

So is he kind of wrapping you up in cotton wool a bit?

Yeah.

To avoid the difficulties that he can see might happen?

Yeah. And you know, and it did, it does frighten him when I’m in. I mean, it what, it’s only recently in the last couple of years that I’ve really realised the impact it has on them because when I’m not well, all I want is to get into hospital, get sorted and get home again. And it’s just sort of once you’re in, once you ring 999 it’s a routine that starts again and you go into ambulance, A&E, on to the assessment unit or the high dependency unit, on to your ward, it’s always the same ward. You’re seeing the same nurses, have a chat, you know, be there for four or five days, six days, you know, and then come home again. But for my parents, life sort of stops because they suddenly have to bring things into hospital for me, look after my dog for me, you know…

So their routine alters completely because they’ve got to be doing different stuff…?

Yeah, and my mum says she thinks she goes into automatic pilot mode, she just sort of, she functions rather than lives.

Jenny emphasises the importance of being treated as an individual because ‘all asthmatics are different’.

Number one, all asthmatics are different, don’t label …stick us all in the same box, you know. Don’t, don’t, don’t assume that we’ll all have the same attitude to things, and that you can treat us all the same way. And it’s like, oh, it’s great when acknowledge that you have the condition and you’ve lived with it and you know what you’re doing. I mean, now, I’ve got A&E well trained now. When I go in there they say, “What do you want, what do you need?” Because they know that I know that I’ve lived with this for a long time so I will say to them well, “Can you listen to this? Am I wheezy? Am I this, am I that? And they’ll, and they’ll say, yes, whatever, and they’ll treat me.

So you’re seen as the expert on your condition, in a sense?

Yes. I mean, lots of people, a lot of medical professionals will say that. “Oh, it’s your condition, you’re the expert”, you know, and then they completely ignore you.

And then I think, well, hang on, you just told me that I’m the expert and that I lived with it, and I am. I mean, the classic thing, my brother, he’s a junior doctor at the minute, and he acknowledges that he knows nothing about that or that he knows very little. I know a lot more about asthma than he does, and - accept the knowledge, use it. I mean, sometimes you get junior doctors who will just blank you. You’ve asked them something and they’ll just blank you, and you’re just like well, what’s the point? You know, I know, I know what’s, what’s happening, I know my body, I know how I feel, and I know what will help, you know.

So you feel that to say to them to listen to you…

Yeah.

And take your help?

I mean, I have to say it gets worse the more senior they get. When you go into hospital down here, you go in under whichever medical consultant happens to be on, and that consultant sees you the next day and then hands you over to, so they’ll hand me back to my, my consultant. But some of the consultants, they want to do this, that and the other. Oh, well, we’ll do this then, and I was like, do you know, just hand me back to …… to my respiratory consultant, and they are like, “Oh, well I think we should try it this way”. And occasionally you have to stop, I mean there’s one doctor and I who, we, she just looks at me and goes, “Oh; it’s you”, and then just walks off now. She won’t, because I refused to let her do something she wanted to do.

It can be quite difficult to assert yourself when you’re feeling low and ill and vulnerable, can’t it, I imagine?

Yeah, yeah, it can be, and I’m, when I’m well, I go from one extreme to the other. I either go to, I’m either the completely helpless, just do it to me, I don’t care, or the, I want this, I want that, I want, you know, you don’t touch that, you’re not, you know. And so that, I mean, again, that makes it difficult sometimes, you know, to, to be, yeah, you, you have to assertive but assertive in a positive way.

I mean, the other thing is if something goes wrong, you know, if a complaint needs to be made or something, I’m not afraid to make the complaint because I don’t want it to happen either again to me or to somebody else. I mean, a classic example, I was left in A&E once, they were busy, and I was put in the wrong cubicle and basically ignored and by the time they had got round to me I ended up in the high dependency unit for three days because they’d left me. And I sort of, I’d said something to one of the nurses, “Oh, I’ll get so and so and so…”, and I ended up having to put in a complaint and get it sorted, and now, you know, they have a different asthma management, so if somebody comes in with asthma, they are only put into a certain area … and they are monitored, it’s much better.