A-Z

Long term health conditions (young people)

Looking after yourself: getting the balance right

All the young people we talked to have had to learn to do certain specific things on a daily or regular basis in order to look after themselves in relation to their condition. This included taking medication, monitoring symptoms, doing exercises, wearing special appliances, having daily medical treatments or specialist help. Young people talked about what it's like to look after themselves, what helps, what problems they have encountered and what motivates them.

It can be hard to get used to the idea of including some specific 'self-care' patterns into daily routines. Some had felt apprehensive at first and afraid about doing things like injecting insulin or changing the dosage of their medication. People were also sometimes unsure what they should or shouldn't be doing or saw the condition as stopping them from really living their life as they wanted to. It is also hard to get used to the need to organise and plan before making any changes to daily routines. Most young people pointed out that maintaining the 'right balance' between doing what you want to do and what you should do, can be difficult. 

 

Explains her condition and her daily care routine and says how hard it is sometimes to get a good...

Explains her condition and her daily care routine and says how hard it is sometimes to get a good...

Age at interview: 19
Sex: Female
Age at diagnosis: 8
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Sometimes I'll just say, 'Well I've got cystic fibrosis and it affects my pancreas so I can't drink.' And some of them will go, 'Alright ok.' Another people will go, 'What you've got what, what, What tell? What's that? Tell me about it.' So then I'll just say, 'Well you know it's a condition which affects my lungs and my digestive system by for it, producing excess mucus. And it makes your lungs like prone to infection and it makes it difficult to digest food because it blocks the pancreatic ducts which secrete the enzymes. So I have to take pancreatic enzymes to help digest my food. And I have to take various antibiotics to help reduce infection in my lungs and do different nebulizer's. And on a average at the moment I'm taking about 50 tablets a day of various kinds. And I have to do physio every morning when I wake up I usually do about an hour depending on how I am. But usually it averages out to be about an hour which helps to reduce the secretions and I bring up the mucus which would otherwise remain there to catch infection. 

Then every day I have to do well I don't have to but I choose to do a form of exercise if possible. For example jogging or cycling or  playing netball or some form of physical activity. Which I find when I run I, it makes me cough which helps to release all the mucus. Or if I don't do that then I'll do some more physiotherapy depending on how I am.' 

And I do enjoy keeping fit and well with my sport and exercise. And it also makes me feel like, almost it makes me feel like I am a healthy and well person despite having CF. And some people say to me, 'Oh you're fitter than me even though you've got CF'. And it was our friend's birthday last week and we were trying to blow out these balloons. And one of my friends couldn't blow up the balloon properly 'cause it was like a funny shape and I just did it without even trying. And she was like, 'Hang on a minute you've got CF lungs how can you do that?' And it was kind of, we were just joking and laughing about it. 

But after my City of Manchester 10K like I did the run. Everything was well and I went back and I was working in a restaurant in the afternoon. And then after that I went home and I was kind of exhausted. It was like, 'Gosh been a busy day'. And then I had some more haemoptysis and stared coughing up a bit of blood which was a bit annoying. It was kind of. I was kind of disappointed more than anything because I was thinking how well I was and I managed to do the City of Manchester 10K and despite having CF. And I'm really, I'm really healthy. 

And then when I started to cough a bit of blood I was, I was more disappointed in my body like, 'Why can't you support me? Like why can't you?' That's what, one of the things I get annoyed about. Like because I sometimes find it hard to get a balance between everything. I find it, I find myself getting a bit disappointed with my body when it doesn't support me all the time. 

I just sometimes find it really hard to get a balance between my social life, between my medication and like managing CF. Between my diet and making sure that I eat a good high calorie diet to keep my energy levels up and between my studying. And I just find all of it sometimes hard to balance. And just as I think I've got it all balanced and I think everything's going really well something will happen and then I'll be like, 'Oh gosh' like and I have to reassess everything. And I kind of learnt through what I can and can't do and I've learnt through you know, the experience of it all. But I still feel like, even though I've experienced, even though I feel like I know what I can and can't do I still feel like something, sometimes things happen and I think that I

Most mentioned four general “tactics” for self-care: 

  • Plan your activities ahead
  • Listen to your body
  • Pace yourself
  • Get enough rest and sleep 

Some said that these tactics have helped them to feel more in control of their condition and physical problems. Some had learnt these tactics from other people with long term conditions, although the importance of some - like 'getting enough rest' - were obvious to everyone.

 

She says that pacing and accepting her condition and limitations have helped her cope better with...

She says that pacing and accepting her condition and limitations have helped her cope better with...

Age at interview: 22
Sex: Female
Age at diagnosis: 16
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I'm quite strict on my sleeping patterns. Because there's one medication I take in the evening, it makes me slightly drowsy. So I always take that at 8.30 and I always aim to be in bed at 10.30. Because I've found that if I'm tired I tend to feel more pain. And then when I'm in pain I tend to feel tired. So I'm quite strict on my sleeping. I'll get into bed, I usually drop off at about 11 and I wake up about half past six. Because if I sleep for too long, that triggers a flare-up as well, because I'm in the same position for too long. So like fatigue and my sleeping patterns, it's really quite closely related to my pain as well.

I'm coping with it quite well. You know, I tend, instead of like fighting against it, like before if I had a flare-up I'd try and go out for a run, but now I tend to work with it. I've sort of stopped thinking, 'Oh, this is a really bad thing'. Because it's not. It's just something you live with. I don't, I try not to let it impact. I know it is very difficult. It's okay for me to sit here and say, 'Oh, yes, my life is perfect'. I know it's far from that at times. But I try and make the best of it now.

Let's talk about manage, managing your condition. You said that in the last couple of years you think you have learned a lot. Can you tell me a little bit more about that?

Yes, I've learnt not to push myself so hard, you know. I've accepted more. I think with time I've accepted, 'Look, you've got scoliosis. You can either make the best of it or just stay at home and stay in bed all the time'. It's like when I said before, when I'd rather stay at home and watch a movie with someone rather than totally cancel the plans of seeing them. It's just, it's about being good to yourself and meeting yourself half, halfway. And don't be so harsh. Because I used to, if I used to take a day off sick at university, I mean I used to torture myself. I used to do things like, 'You're never going to pass now. You're going to miss so much work' When it wasn't. My mates used to bring my work round in the evening to me, and I used to catch up then. Or my tutor used to email me with work. So I never really used to lose a lot.

But you felt bad?

Yes, I did, I did. I really did feel bad. But...

Because you were failing others?

Yes. And I thought I was failing myself too. Because where I hadn't accepted that I had this condition, I thought, 'Oh, you're being lazy, Elizabeth. For God's sake, get out of bed'. And I used to push myself really too hard. And in the long run I was doing myself a lot more damage. Because rather than like stepping things down a little bit, I'd keep it at the same level, and it would take my body a lot longer to recuperate.

So one of the key is to accept your condition?

Yes. And it's pacing as well. Do what you can, not what you think you should be able to, not what your friends tell you you should be able to, and sometimes not even what your physio tells you you should be able to, or your doctor. Because sometimes they only see you at certain points of your condition. They're not with you day in and, and day out. So do what you can really.
 
 

He says that he knows and respects his limits and when in pain, he just rests until he feels...

He says that he knows and respects his limits and when in pain, he just rests until he feels...

Age at interview: 19
Sex: Male
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Basically I suffered from much more pain and they call it crisis. I suffered with a lot of pain when I was  from the age of six to probably thirteen or so yes. I was in hospital quite a lot and I used to always be ill. I used to just used to be in pain. But nowadays that I'm growing older I'm getting out of my teenage years, I don't really suffer that much from it. I get pain occasionally but I don't really get it that much. 

Any time I would get pain it would normally be, well I could get it in different places, my chest, my stomach, sometimes my leg and my arms. But any time I would get pain at, the first thing I would do, just take my medication. And I'll just try and rest. If I'm, for instance, I do that and it doesn't work then I, like part of my body my mum would probably massage, or, you know, my sister would help massage. But the pain, again in different places like, they, when I get pain in my legs and my arms is, that's, that's not so bad, but my chest and my stomach and my back those are like the worse places. But  the, the pain would normally last for around, if it's not so bad probably up to 3 or 4 hours. If, if it is bad probably all day. So I just try and rest, you know, I don't do nothing. I just lie in bed. So.

And for how long do you need to rest? 

Just when I know my body, you know, much better and I'm feeling a bit like, when the pain's gone that's, that's when I know I'm, you know, much better. But I just try and, if it's something that's, I know could get serious I just rest all day. And then the next day, if I'm feeling better then you know, I just go about my day and everything. But if the pain, you know, starts to increase, that's when I know I need to rest and I just need to take my time.

Most people they continue to suffer. It depends how you treat yourself like you know it depends how you look after yourself I should say. But me I try to do the right things all the time. I don't go over my limits you know. I don't play too much sports. And I know my boundaries like I don't go too far and I always limit myself with anything I have to do. But it depends what type of person you are and how you treat yourself basically. 

Tell me more about what you do what you need to do to in order to look after yourself and prevent a crisis?

Basically it depends like in the weather ' the weather can be cold at times, basically you just meaning dress warmer and don't go out into the cold. Try and stay away from like you know  bad weather like rain and just also always trying to keep warm. And just not going over the limit like such as doing major sports and other things like that just '

Okay. How do you feel about having that kind of limitation to doing sport?

I'm not really bothered by it because at the same time I don't really play that much sport. But I can do quite a lot at sport you know I do different activities. And you know it doesn't really bother me that much that you know that I have to stuff that I... But I know how my body works and you know there's only a certain amount I can do before you know ' I would know when I have to stop so I just ' I know my body really well. 

Okay. Do you take any medication?

Yes. I take penicillin and folic acid every day.

Every day?

Yes.

Throughout the year or '?

Just basically every day like every day of the o

Many commented that self-care is particularly difficult for teens. As teenagers, they wanted to do what their friends are doing and not to feel different. Some neglected their daily exercises, or did things that made their physical symptoms worse - like drinking alcohol, skipping meals, not taking medication or not wearing warm clothes. Many said they had learnt from their own experiences and commented on the importance of 'tough love' from parents and getting a 'good nagging' from their doctors! 

 

She 'rebelled' against her cystic fibrosis when she was a teenager and acknowledges that it is...

She 'rebelled' against her cystic fibrosis when she was a teenager and acknowledges that it is...

Age at interview: 21
Sex: Female
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I didn't, there wasn't any major times when I was unwell, until I got to the age of about 14 and I had a rebellious streak [laughs], as we all do, and from about 14 to 19 that's when I started, I had a portacath put in and I started having I.V.'s and it wasn't so much that I had bad chest infections, it was more to prevent it getting to that stage, which is what my new doctor, Doctor [name]'s idea was, was to stop it before it got that bad. And since about 19 I haven't had any, and I'm 21 now. So I'm doing alright.

Can you tell me more and in more details about your rebellious years?

Probably it was lack of care, lack of, I think it was because I hadn't had any real problems with CF, I didn't, it was probably denial that I had it, it didn't affect us, so I didn't take medication, I did think that I probably shouldn't have, and it hit back [Laughs]. Really, that's when I started getting chest infections.

What were you doing that you shouldn't have been?

Probably drinking. Oh I was under age but that kind of, it does even now when I go out, I tend not to drink much, unless it's a special occasion because it does dry us out and its makes us, the atmosphere as well, smoky atmospheres.

I think in a way everyone rebels at that age, it's teenage, you have to do it. I think you find yourself at the same time, so you'll find when you do get out of that stage, you have to go through it, because then you've done it, I'll say, 'I've been there, I've done that'. And then you come out and you're like, 'right this is actually what I want to do' and you do, you do need someone there that's pushing you in the right direction, being an absolute nag, pain in the arse, you don't want to do it, but someone that's constantly pushing you in the right direction.

That's usually the Mum? 

Hard love. It wasn't actually my Mum, it was more my Dad, and probably my, my healthcare professionals like my nurses, my doctors, kind of.

So in a way they '

I think they put up with it a lot. They put up with us being that way, but then got serious 'right you need to stop doing this'.

 

She has learnt from experience about taking care of herself. Says that when you are a teenager...

She has learnt from experience about taking care of herself. Says that when you are a teenager...

Age at interview: 23
Sex: Female
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What do you think will happen if you do not  look after yourself?

You'd just be ill all the time [laugh].

Have your doctors sort of talked to about it or not?

About not looking after myself?

No because I think I was. I've always looked after. Well I've always had my mum look after me and then encourage me to look after myself. So.

I would like to know how she encouraged you to look after yourself?

Just by, by her looking after me. Taught me to look after myself as I got older. And I know when I don't look after myself that I can get ill. So the doctors have never had to encourage me to do that really because I've learnt from experience. Like a little things like if when I was younger my friends were going out and they don't want to wear a jacket and I was like, 'I don't wear a jacket' [laugh]. And then I'll get cold and I'll get ill so I've learnt as well if I, sometimes you don't want to listen to your mum, you don't want to listen to the doctors. So you experience it for yourself and that way you could have avoided the two weeks of being ill if you'd just worn a jacket. 

So it's you know, it's the little things. And now I'm a lot older I'm a, like my own person now. I don't. You know if my friends go out in nothing and it's raining or cold and I still wear my jacket. I still do what I want to do and I still have fun. And afterwards I still, I'll still be well because my friends aren't the one that you know, they can go out naked and they can still. They're not going to get ill. There's me that's going to get ill. So by doing things like that I've just learnt it's not worth it. And I've been through it so now I know just to take care of myself.

You went through it, of not listening to your mum or not wanting to listen to the doctors?

Yeah or just trying. I think you're trying to be like everybody else but your body is not like everybody else's.

Ok. So that's the message you, you got from your own experiences.

Yeah.

Presumably you rebelled when you were'

Maybe I don't know but I think because like when we started going clubbing and stuff so like started going out at the night when I'd never used to. And sometimes you just want to, you know, you just want to be like all your friends. But then you have to remember, you know, none of your friends have sickle cell, you're the one that has sickle cell. So they can do things like freeze to death [laugh] and stay up all night and get no sleep and you know all they have is a hangover or they might get a little bit of a cold but the effect that your body will have is that it will just go into a crisis. So I don't know if it was rebelling but it was just me like if someone. I think for me if someone tells me something it's not that I don't believe it. Most of the time I want to experience it for myself good or bad and think, 'Ok now I understand'.

Ok. Was it also a little bit the fact that you wanted not to be different from '

Yeah you want to be the same as everybody else. You want to do all what they're doing because that's your group of friends. But I mean I now know that I can do that but I just have to make sure that I do the things that are going to keep me from, you know, prevention of being ill as well.

 

Had night time leg splints for her arthritis but found it hard to wear day time splints on her...

Had night time leg splints for her arthritis but found it hard to wear day time splints on her...

Age at interview: 21
Sex: Female
Age at diagnosis: 12
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And I don't feel that they really helped me either, because I used to take them off. My legs are straight now because I used to do the exercises and I used to do all the physio and keep up with all of that, that was very important. So my legs are fine now, I don't have to wear them. I actually liked the splints for my hands; they're to stop my wrists from bending down. You may have seen people they've had arthritis and didn't have splints and their wrists are permanently bent downwards. And  that's really sad to see because I think splints weren't thought as being that important in, in those, in the day that the person probably needed them. But I wear my night time splints. I do have slight dips in my wrists but I wear my splints every night so hopefully it, it won't get much worse.

I do have problem with day splints. I've never found a single day splint that I can wear and actually use because they're usually hard plastic and they go up to, half way up your hand and I don't think you realise how important the palm of your hand is until you have it half covered with plastic. You can't use a mouse on a computer like that, you can't use cutlery like that, you can't write, like it, it's too difficult to write 'cos you haven't got the manipulation in your muscles 'cos they're held in place. And I think the doctor's a little bit  idealistic in that. They think that they're practical and that they're wearable but I found I could only ever wear it if I wasn't doing anything. 

But I never used to have night splints either so that might have been it as well. So I would recommend those  to anybody with problems with their wrists. Keep on with the splints and definitely wear them at night because they, they're vital in keeping your wrists nice and healthy and flat.

My left shoulder's quite bad and that's, I see that as being really my fault because I didn't keep up with the shoulder exercises and I do regret not doing them but I don't beat myself up about it. I used to get really frustrated with myself but there's nothing I can do about it, there's nothing I can change. The doctors say that they could replace the whole joint but I wouldn't get the movement back in it. But I believe that if I worked hard enough I think I could get the movement back.

Understanding and confidence about how to look after yourself is often a gradual process. Parents and doctors can help young people to understand the need to look after themselves and the serious consequences if they don't (see 'Getting on with your healthcare team', 'Talking to doctors and nurses', ' Transition from children's to adult services/clinics' and 'Dealing with the family'). Learning how to cope with physical problems such as pain can really help young people feel some control over their illness. The down side of taking responsibility for your own health is that you might end up blaming yourself if you get ill again - even if it will really not, in most cases, be because of anything they have done.
 

She now knows more about how to control pain. Her mother has played a pivotal role in helping her...

She now knows more about how to control pain. Her mother has played a pivotal role in helping her...

Age at interview: 17
Sex: Female
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Ok so what are the things you need to do in order to, to help yourself and your condition?

Take medication and to wear a lot of warm clothes. But I don't really like wearing jackets and all that but I have to get used to it because when I didn't wear jackets and I got the attacks, you understand. But yeah I had to wear jumpers and you know, another jumper under that and you know, two pairs of trousers and thermals. Oh dear, a lot of warm clothing, yeah. 

Do you remember how old you were when you started to understand what you needed to do and why you were doing it?

About 14 or yeah about 14, 13 I could control it a bit, you understand 'cause it's like I was having sickle cell attacks and I had the sickle cell attacks and I would just think, 'Oh it's an attack'. But when I got to 13 and 14 I was realising that it didn't have, it doesn't have to come as often as it does. So I wear warm clothing and it, and even if I did get the attack I will try and control it and try and think of something else so I don't dwell upon the pain so it wouldn't come as much or it wouldn't, you know. Yes then it wouldn't really affect me that much if I didn't concentrate on it. Then it would just...

Oh it has definitely changed, definitely because I'm aware. I just feel that I can control it. When I was younger I couldn't control it at all. It would just come and I'd be there for two, three weeks in pain but now when it comes it's like, 'Oh it's an attack'. I mean I could, I could get up and I could cook. You understand but when I was younger I would be in hospital having all these needles but now if I had an attack in my leg or I'd just get up put some hot water on it or have a painkiller and then I would go and maybe sweep the floor or help the twins their homework. Like it doesn't. It comes to mind at times and even though the pain is there I just get on with what I'm doing but before I couldn't do that.

Apart from wrapping up and taking your medication what else do you need to do?

What to, to prevent ourselves from getting sickle cell. Just be wise basically. Just be wise, yeah. Maybe we could go swimming and the next week go swimming. But you have then, you have to realise that, 'Ok I can go this week but I can't go next week because if I go twice in a row and it's quite cold then you know that you'll get an attack. So just be wise with your thinking, in terms of when you do things.

When you have an attack, how long does it last?

The attacks, they can last for two weeks, two, three weeks in that, in the same pain.

What do you think has helped?

My mum. She's, I don't know 'cause she was brought up in Liverpool and they were very strict with her and they just told her to get on with anything. Do you know? So when we have an attack sometimes it does help when she says, 'No come on, [clap] get up. Do some stretches. Go to the shop for me.' 

And you think, 'Oh my days what is this woman putting me through like. I've got like a big pain in my chest and she wants me to go to the shop.' But it does help. It definitely helps with, without a doubt, without a doubt. Yeah. And so when we have attacks, maybe she might let us off for the first week, first two weeks or the first, first week and when it gets to the second or third week then she's like, 'Oh go to the shop for me. Get up, do some stretching.' Otherwise if you're just sitting there and you're just lying there watching TV all day your body will get stiff and won't be able to move. So ye

We were told about the various techniques used by young people to help cope with their physical problems such as persistent pain and tiredness. These included breathing and relaxation techniques, making daily activity charts, physiotherapy and exercises. A few had sought specialist help such as attending sessions with a pain psychologist or having complementary therapies (see 'Finding the right medication'). A person with ME/CFS said that he thought taking homeopathic remedies had helped control his headaches, coughs and colds.

 

The psychologist helped her to understand the relationship between pain and emotions and how...

The psychologist helped her to understand the relationship between pain and emotions and how...

Age at interview: 28
Sex: Female
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I was referred to a pain psychologist as a part I think probably support side of coping with the pain. I think, my GP, I think actually it was a consultant under the pelvic pain, but I went, I see a pain psycho, pain psychologist and it really, I think it really helped me. We did, we went through different things that we had to, we did a diary, when I was at uni and a different environment, where we had to, I kept a diary on a daily basis. Everything that I did had a scale of say one to ten or one to five and what those things, what those things, you know, let's say walking down the street and I put five or whatever and what I did and what things made me worse, in what ways they made me worse and then I'd go back to my meeting, which was once a week, with the pain psychologist and we'd go through the diary and she'd say 'How, when you did get to that level, how did you get through to cope?' So, if it was on a scale of one to five. How did you cope when it was level five? What did you do? And then she would suggest such things that may enhance what you did, like breathing through breathing techniques. One thing that she did actually was explained how pain is interpreted by the brain, so they use a, one thing that sticks in my mind, they used the simple terminology of a pain gate in the lower back that opens and closes according to your psychological interpretation of pain I think. And what opens that pain gate so if you're feeling more emotional, you're feeling less able to cope on a certain day then, for example, that may open the pain gate so the pain may seem worse. Which I don't want to sound like it's kind of all psychological 'cos some people might interpret it that way. But sometimes pain can be interpreted worse because you feel bad and some people, you know, and that can be intimidating for some people I think, because if you feel that your pain's made worse by your emotions and things, sometimes you worry that people think you're dolally rather than there being something actually wrong. And but there is the terminol' that this is what the pain psychologist explained and how, you know, these sort of things may affect it and what you can do to counteract those' You know, for example, if you're walking down the street if you feel that you're at level five, and you're feeling particularly emotional, you're feeling down, then your pain gate is going to make it a level five, whereas it may be, if you breathe a little deeper, rather than short breaths because you're feeling anxious. So, if you breathe deeper, you know, enabling oxygen to move round your body better, letting your body relax further, then maybe the pain level might be a level three. So, you know, it's not necessarily just the psychological interpretation but it's how that psychology affects how your body works and breathing's probably the best example of that, 'cos it does obviously affect how your muscles work, not obviously, but it does affect how your muscles relax.

 

She needs to take care of two chronic conditions: type 1 diabetes and cystic fibrosis. Of the two...

She needs to take care of two chronic conditions: type 1 diabetes and cystic fibrosis. Of the two...

Age at interview: 21
Sex: Female
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What else do you need to do in order to prevent infections?

I don't think that I actually do much to prevent infection. I'm just being very lucky. I think. I think around Uni, Fresher's week, I didn't do that, because everyone gets Fresher's Flu, colds. I tend to stay away from, if I know someone's not very well I'll stay away. Or, my family will say, 'Ah, so and so's got this' and I'll say 'alright, I'll not come round' [Laughs]. So I tend to stay away from anywhere that's going to put this, and I'm always, it could be, say, obviously the British, 15 degrees, wow its hot, and I'll be like in a jumper. Make sure that I'm not exposed too much to get any kind of infection.

How was it for you to get used to injections?

It was fine, but for someone that had getting rid of most of the medication that I take, and now I have to inject something all the time, oh, it's all it's like, just remembering for me, I mean it seems really daft, someone with CF saying I forget to take my tablets, but its like say you had a two week prescription for something, you forget its exactly the same. Just because I have CF, because it doesn't affect me as much, if I've got a cold, or if I've got flu, then I don't forget anything, because I'm aware of it, but something that you're not aware of, my diabetes, the only time I'm aware of it is when I'm not well and I'm high and I'm tired, and I'll be like I'm tired and I'll take my blood and like oh, its 12 [laughs], that's why, but that's the only time I'm really aware of it, otherwise because I'm on my bike, I'm constantly keeping it down, so it's '

You like your exercise.

It's probably why I don't have to take so much insulin, as, I mean a normal, the normal is for every kilo of your body weight is a unit. And I'm only taking five or six units, and I don't weigh 5 kilos [laughs] so, might not; I'm taking next to nothing.

I think I have ups and downs where sometimes I'm really good, everything's fine and when I do it I feel good for it, I feel better, there is a difference, then I got through times when oh, just can't be bothered, and then I'll go into a dip and then I'll feel crap, and you say, yes you know why you feel crap. I'll start taking, it is, it's like a constant, sometimes it's really good, sometimes it's a bit naff, and then you pick yourself up. It's never constant where it's perfect all the way; it's always up and down, for me.

What are the difficult things about managing your conditions?

I'd definitely say the insulin part of it. CF I've got no problem controlling, the diabetes is the hard one to control, homeostasis [laughs]. Very hard to control.

Why because '

Probably because I'm quite active and because I'm always exercising, like on my bike and things like that, it is hard to control. And eating at the right times, you've got to think of the exercise you do, when you're eating, how much you take in, and everyday isn't the same. You could be less active, you could be eating more, you could be eating less that day, but more active, and because you're eating less but you're more active, at some point you are going to have to eat more, or you'll have to take less insulin, so the insulin levels always up and down, and its judging it, you never know, some days it's like I mightn't be doing this, then all of a sudden someone rings you up, oh we're going to go out, we're going to do this, and you haven't, because you're not prepared for it, you've got to think right I need to take this, I need this, I need that, and that's the hard par

People who needed to use wheelchairs, or other mobility aids, described how this helped them to be more independent. One person who requires full time care emphasised independence of the mind as an important aspect of self-care. 

 

He doesn't like relying on others to help with daily activities but knows when he needs help....

He doesn't like relying on others to help with daily activities but knows when he needs help....

Age at interview: 23
Sex: Male
Age at diagnosis: 2
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I have got two friends at the moment that are both in wheelchairs and far worse than me. You know they need help, you know 24 hour care, you know but I don't need 24 hour care I can do a lot of things for myself. But I do say to people you can take heart from that. If they can do it, why can't I. Do you know what I mean. So you can learn from other people a lot. I have become a lot independent since I started university, you know and you just see other people and you think you know I want to do that. You know, you don't want to be relying, I mean I hate relying on other people. You know. I hate relying on people and if I drop something on the floor you know I hate asking people to pick it up you know. I absolutely hate it. You know in case people moan or something. But there are some things I just can't do so I have to have some help.

Well around the house you know. Well for instance I can't put socks on and so I don't wear socks. Right. I haven't worn socks for five years. I know it sounds crazy but because I can't put socks on I don't want to keep asking people. I mean in the morning I have to get up myself, dress myself, so there is nobody here to help me put my socks on. So the simple solution is don't wear any socks. You know what I mean. I just can't do it you know. I can't bend down that far. I can get my shoes on because I have got like sticks etc that is easy. But I can't put my sock on. So I don't have any. I don't even have any socks. I know that is only a small thing but it is something I cannot not do. I couldn't do it to save my life. So I just don't wear socks. You now I can't, I mean in the kitchen we have got low work surfaces but I can't really cook so well because I can't lift the pans etc. And they are too heavy and I haven't got the strength. And I can't stand up for a long time anyway. I can only stand up for five, ten minutes at a time. So anything that involves standing up you know, for a long time I can't do. I can make a drink, I can make a sandwich, do the basic things but I can't cook a meal. Do you know what I mean. Because I can't cut things as well with a knife or something because I haven't got the strength. You know. But obviously I can't walk far. If I want to walk to the shops, I can't walk to the shops. And I know I can't play sports but I can do most daily things. 

Back in March I learnt to drive. So I have got my car out there is mine. That is probably the best thing in the world because at least I can get to places without paying taxi fares and what have you. As you know it is expensive. But yes, that is probably the main. Having the car that is obviously the main boost is the car.
 

Everyone felt motivated to keep well in order to accomplish their goals, dreams and projects -whether these were in their social life, work or at school or college. Making the most of life and not 'wasting time' by being ill was seen as really important. Some people were very much encouraged by seeing how other people managed and stayed positive despite having much worse physical problems. 

Keeping well also means maintaining some independence and learning to “work with your illness and not against it”. A young woman who had recently stayed out late dancing knew she would feel bad the next day but also knew how to make herself better. She said, “It was worth it because I'd had such a good night out… you can't be an angel all the time… sometimes it's about striking a balance”.

Last reviewed July 2017.

Last updated May 2014.

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