Lina

Lina has always been a healthy weight. However, from her late 30s she became ill with several health conditions, including asthma, fibromyalgia, a brain tumour, and type 2 diabetes. Lina was given medications to stabilise her conditions, but gained weight rapidly. Lina has made changes to her diet to manage this, and continues to be proactive in seeking support around her health, and committed to staying active where possible.

Lina has always been a healthy weight, and led an active lifestyle, going to the gym, running and swimming frequently. However, in her late 30s, Lina was diagnosed with brittle asthma after suddenly becoming ill. Soon after this, Lina started having severe body aches, and was told she had fibromyalgia. Lina then started suffering from chronic migraines, which led to the discovery of a brain tumour. Lina was put on steroids to stop the tumour growing. However, Lina went on to develop type 2 diabetes, which runs in her family. Lina also suffers from IBS, osteoporosis, and depression, and now lives with complex chronic co-morbidities. Indeed, Lina’s life has changed drastically in recent years, and she has had to adapt to changes like using a scooter, a zimmer frame and a commode, as well as having a carer help her with tasks like washing, it is much differenthen you;re born with a disability than when you;re thrown into it kicking and screaming it’s very difficult managing at the momen.

Lina gained 30 kilos after becoming ill, which she attributes to pain medication and her steroids, which have increased her appetite and caused weight gain. Since being active is difficult for Lina, she is trying to adapt to her changed appearance, I have to get used to looking like this because at the moment there’s isn’t going to be a way of me, to be able to burn off that amount, that much amount of fat and that much amount of calories in my current physical stat. However, there came a point where Lina reached 13 stone and decided she needed to take action. Whilst keeping her asthma and brain tumour stable is a priority for Lina, she is currently working with her consultants to reduce her steroid dosage. However, Lina is focusing on lifestyle changes to manage her weight and health.

Although Lina initially found it hard to find motivation, she has recently made changes to her diet. Lina uses a small plate to manage her portions. She eats lots of vegetables, lean meat and fish, and has reduced her red meat consumption, which she has only as a trea. She has cut down on fried foods, and stopped buying desserts, eating dark chocolate or fruit when she fancies something sweet. Although she still buys snacks for her children, Lina tries to fill up on tea and carbonated water between meals. Lina has also started following a high protein low carbohydrate diet, as she did before becoming ill. Lina has received support over making these changes by a dietician, who has helped her adapt her diet to manage her blood sugar. Lina has lost almost 4 kilos since adapting her diet.
Although exercising is challenging for Lina, she hopes to take up swimming in the future.

Whilst Lina has been frustrated by the long waiting times for specialist appointments, she has a good rapport with her healthcare professionals, especially her GP, who rings her frequently to check how she is. Lina also has a strong relationship with her nurses, and has been touched by exceptional care she has received from consultants in the past, it’s like carrying loads of stuff on your back and something just falls offit’s that little bit of extra help or extra kindness or extra care sometimes I think people need thatyou want to be treated like a human bein. Lina encourages other healthcare professionals to be mindful of the difficulties a lot of patients face, and to offer comfort where they can.

Lina takes an active stance in learning about her conditions, I’m very proactive in my disabilities. I read up on them. I join forumsI make it so that when I go in to see a doctor or a consultant that we can talk about my illnessforearmed is forewarne. She has also started tracking her activity, heart rate, and sleep patterns on a wrist device. Lina encourages people suffering from conditions like hers to gather support and motivation from a range of sources, particularly online forums where users share common goals. She reminds others to be kind to yoursel, and recommends alternative therapies such as acupuncture and massage.

Lina worries about the impact of her disability on her children, especially her youngest, I can’t do what I want to dot’s the holidays, I can’t spend time with my daughter and go outsidet’s really like trying to run a race with your hands and legs tied behind your bac. However, her children motivate Lina to stay positive and to follow a healthy lifestyle, as she aspires to see them get married and have children themselves. She is determined to stay active where possible, I’m trying my best to not just lay there and just let the world go b.

Lina’s respiratory consultant has suggested a treatment called Bronchial thermoplasty, which she hopes will reduce the need for large doses of steroids she requires following a severe asthma attack.

Age at interview 49

Gender Female

Do you have those, do you still have those hunger pangs or

No luckily, I fought damn hard with the consultants to bring my steroids down.

We’re trying to get it down to five milligrams. We’re at seven, so I,I feel that I’m heading in the right direction, so long as I, you see the problem is they get frightened because they’re like, Oh, you know, we don’t want you to have another bad asthma attack You know, this one could be the fatal one because that’s what you, that’s what you think, that’s what you know. You don’t know that, that particular asthma attack could be the one that puts you in hospital so you’re wary of taking your medicines down but I found, I found that since I’ve gone down in my medication, my appetite is starting to kind of normalise itself now.

I have normal hunger pangs [laughs]. I still, I’m managing with protein shakes for breakfast, but I know that I’ve got to eat breakfast, lunch and dinner, that’s it and I maybe I’m allowed a snack and that’s it.

As an example, with my asthma, what the doctors were saying as well, we don’t know, there’s not much more we can do, you’re going to have to stay on steroids for life and blah, blah, blah. And it was always sort of doom and gloom and then I found out from, I dropped into a respiratory consultant who I know, who sees me at the hospital and I said, there is a treatment for asthmatics or severe asthmatics, people with COPD or people who have got severe asthma like myself and it’s called thermoplasty and it’s basically they heat up your, your air sacs in your lungs and the tubes in your lungs because every time you have an episode or you become ill, your lungs become scarred and the tubes become smaller and smaller, so if every time you get sick, you literally you’re losing air in a way more rapidly than you would if they didn’t give you steroids, because what steroids does is it tries to control the inflammation, so instead of when I’m really sick I’m like that, it can give me the extra air I need.

So that’s the reason why they want to keep me on the steroids.

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Lina says her GP and nurses have been outstanding. She emphasises the importance of getting the right GP.

Age at interview 49

Gender Female

I’ve been lucky. I’ve been lucky. My GPs, and the GPs, the nurses and everything have been outstanding for me. I hear different stories from other people. They don’t get the right GP and getting the right GP I think is the most important because they’re your first point of call when you’ve got anything wrong with you. So, if you’ve got a GP that you don’t like, your less likely to want to go and say, Oh, by the way, something, this is wrong, that’s wrong But I was of the era when, you know, we didn’t need to go to doctors unless, you know, something was coming out of something that shouldn’t be [laughs] and then I started to realise you’ve been in pain for like, two weeks. This is not right, and I went to the doctors and said, I’ve been in pain for two weeks. This is not right And he’s like, No, this is not right And then we delved into more and more and then, obviously, started to find out there were more things wrong with me than I anticipated than I realised. But having him, having been able to call him and there is actually two doctors who I see, being able to just call and say, Can you ask the doctor to call me and they say, Oh they’re quite busy, but I’ll put a note in there And then they do call. it’s just, it’s just nice, it’s just nice to know, you know.

You have that support there?

Yes, absolutely, absolutely.

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Lina found snacking difficult but now drinks carbonated water, eats fruit or drinks tea so that she can hang on until mealtimes.

Age at interview 49

Gender Female

I found snacking difficult. That’s the one, that’s the in-between meals. The meals were not a problem. It was, you know, behind you I have a box of snacks and to be able to just walk past the box every day was never, I could never do it, ooh, ooh and now I can actually have the box there and not. I’m just learning what I can snack on and what I can’t snack on and finding extra things. For me, I found even the people say, That’s still bad, there’s a lot of salt in it carbonated water.

So, when I feel a little bit hungry I have some bubbly water for squirty, I put lemon juice in it, lemon it and that tricks my stomach into thinking it’s full, it fills me up, so I can hang on until mealtimes. So, I do little things like that. Maybe have a piece of fruit or even a cup of tea, it’s fine. Cutting out the desserts and that. I order things, so I know, I know Haagan Dazs, so that comes off my shopping list, you know, that sort of thing. I’m mindful now of not ordering things that I know are going tip me over the edge and I’ve suddenly had a likening now for dark chocolate and I used to hate dark chocolate [laughs]. But no, if it’s all I can have, then I’ll have that. At least, it means I’m still not being a naughty girl. I’m allowed that.

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Lina describes how Cognitive Behavioural Therapy helped her on the road to healthy eating.

Age at interview 49

Gender Female

Yeah, you also had cognitive therapy.

Yeah.

So how that has helped in this kind of process?

I never thought I was going to use it. I thought, well I didn’t feel I was going to need it. I didn’t feel, what do I need to do that for? But it makes you look at your pain and how you manage it and what you can do. it’s never going to make your pain go away, so you always go in negatively because you’re thinking, Well, what’s the point? You know, I’m going to come out of there. I’m still going to be in the same position I was when I went in. Yeah you are but what’s going to happen is your mind, it changes how you think about things. How you process what you do with your pain and so, I guess my processing of the pain is to be proactive. In fact, the more busy I keep, the less pain I feel. Obviously the less active I am, the more pain I feel, so it, it goes, for me I think that keeping myself active is part of what cognitive therapy is. Even if you’re just keeping your mind active. Just meditating, I like a bit of meditating and deep breathing and then I fall asleep [laughs]. But hey, you know, I’m meditating. I was in a place where I wasn’t in pain.

So, you know, I think that mindfulness and being mindful of what you do and how what you do affects others that’s another part of it. Being nice to yourself, you know, I wouldn’t of, years ago I wouldn’t have thought having a massage, What do I want a massage for? I’m all right. I’m fine. Just having little things, massages, you know, I bought myself a little foot spa thing. It wasn’t expensive, but it’s just nice to buy the little things and sit in, you know, just be kind to yourself, you know. Be kind to yourself, be mindful. Be aware of what you do and how you treat others, because as I said, you can be very nasty. I’ve seem some very nasty people on the steroids. It an actually make you quite aggressive and I never really realised that until I was in hospital and I saw a patient, she was horrible, horrible, horrible. But it was like a switch, when she was talking to me, she was fine but when they were, you know, when the nurses were trying to be, she was just so horrible and I thought, I looked at that and I thought, Oh my goodness, that’s, I hope… When she went they were all just like, [sighs], you know, they can’t say anything negative, but you could see by their faces, you know. She upset, they, she was upsetting and everything and I just thought to myself, I’m not going to let steroids do that to me [laughs]. Oh, no way.

No, so you are using, it’s like you are using a kind of package
Yeah.

.where you have been, you are including all this little, all these big and little elements

Yeah, that’s right. It and it’s almost as though yeah, it was like a, it was like a fruit bowl, you know, and
Yeah, that’s a better one.

here you can, people don’t realise how many fruits there are in the world. You know, we just knew there were apples, oranges and bananas when I was a kid, [laughs] you know. We’ve got guavas, pomegranates, oh my god there’s so much fruit. Pink grapefruit. Red blood oranges. There’s so many fruits that you just don’t realise and in that context, there’s so many different things and you’ve got to try it, try it and see if you like it. If you like it, you keep it up here. If you don’t like it, you get rid of it and you move on to the next thing, but, don’t hang on to, just try not to hang onto the dark side,’ I call it.

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Lina tries not to bother her family with her weight issues because she doesn’t want to be a burden.

Age at interview 49

Gender Female

You have your family there you can sort of talk to and

Yes, well I don’t want to bother them [laughs].

Okay.

I try not, I try to make it that I don’t want to bother them too much. I don’t want to be the old sister that everyone thinks, Oh God, oh, she’s calling me again. I’m not answering it. I don’t want to be one of those ones, so I don’t.

Okay.

Fuss them all the time and I realise sometimes it might get them, they might be having a really good day and then I ring them up and say, Oh guess wha you know?

I don’t like to bring people down when I’m already down, so what I try to do is do something to make myself upbeat or just completely not talk about the subject. If they bring it up, but start on a nice note, Hi, how are you today you know, start off like that and, and go from there. But I never, I hate starting off a conversation with, Oh, I’m sick or this happened to me today. I realise it’s not good.

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Lina likes to read up on her disabilities online and describes herself as pretty computer savvy. Her sister calls her Mrs Google.com.

Age at interview 49

Gender Female

The thing about me is I’m very proactive in my disabilities. I read up on them. I join forums, I make it my, I make it so that when I go in to see a doctor or a consultant that we can talk about my illness and I’m not thinking, coming out thinking, What the hell’s he talking about?’ you know, and come out with less information than I did when I came in because I’ve, it’s so difficult to try and process a lot of things. So, if you’re, forearmed is forewarned, I say when you’ve got any type of illness find out as much as you can about it, you know, my sister calls me, Mrs Google.com’ [laughs].

[Laughs.]

You’ve been on Google again Yes, I have You know, it’s my friend [laughs] when I’m, I’m here on my own, me and my phone and I’m like, Let me just see what they’re saying. So yeah, so I love to make sure that I know what’s going on with my health, that I’m up to date and up to speed
I go to fibromyalgia.co.uk, Diabetes UK, chronic, the Royal Society of Neurology. I think that’s headaches and Arthritis.co.uk for my arthritis problems, they also do cover fibromyalgia because it is classed as a muscoskeletal disorder, so it does come under their, their reign of, they’ve got very good leaflets.

Okay.

So, I just picked one up at the hospital and I was like, Oh they’ve got a website. Oh, I’m going to go to that.

And you register?

Yeah, I register and I also register for newsletters, so any little, so I won’t miss out on any new thing that comes up
Okay.

.which is perfect for me because then I can be on top of it. It comes in my email. I go straight to it, open it up and then it gives me links to different places I need to go to if I want any more information, so yeah I’m pretty computer savvy now.

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Lina explains how steroid treatment led her to gain weight and left her with the moon face effect.

Age at interview 49

Gender Female

So, regarding your weight, you, you, the main reasons for you is the medication that you have put on weight because of steroids and other medications that you take.

Absolutely, there’s no hundred per cent but everybody who knows me, family, friends, they said to me, Oh wow, what’s happened and I’ve said, Well since I’ve started taking steroids and medication I’m just, this is what I look like and anybody that takes steroids it happens to us all, we get this face, this moon face effect. And I said to them, What it is, is your body tries to store fat in other places so it will shoot to your face, or the back bit of your neck or round your midriff area and unless I’m you know, killing it in the gym, it’s unfortunately is going to, that’s how I have to get used to looking like this because at the moment there’s isn’t going to be a way of me, to be able to burn off that amount, that much amount of fat and that much amount of calories in my current physical state, so I’m just noticed I was getting bigger and bigger and when I got to thirteen stone, I was like, I can’t, I’ve got to try and do something. So hopefully, well not hopefully, it has, I have been losing weight. I’m, from 88 kilograms, I’m now 84.2.

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Before Lina became ill she was very active – she feels sure that her treatments, for several serious illnesses, have contributed to her weight gain.

Age at interview 49

Gender Female

When I was diagnosed with asthma, I was already seen by a CBT counsellor. I’d had CBT.

Cognitive Behavioural Therapy?

Yes.

Okay.

Because it was, it was a shock. I didn’t realise I was that ill. I just didn’t, it was only when I kept going in hospital it started to affect me. Obviously, it affects your home life, you have to start finding people to look after your children. You’re worried sick about them. they’re worried sick about you. You don’t know how long you’re going to be in there. Sometimes, I’ve been in, I’ve been in intensive care once with my asthma, so, you know, I know it’s very serious, life threatening thing.

So that was one thing I had to deal with and then subsequently after that they found out I suffered from chronic migraines. The chronic migraines then led to them finding I had a brain tumour, meningioma. it’s a paranasal meningioma and it’s in the left, I hope I’m using my left hand, the left side of my head, so it’s around this area of my brain. It isn’t growing at the moment, so at the moment it’s a watch and wait and that might be down to the fact that I’m on steroids because they use steroid treatment to keep the tumour from becoming inflamed or angry, so that be why it’s not growing or doing anything. So that’s another part of a conundrum of me saying, Oh, I want to get off steroids and then I’m thinking, If I get off steroids maybe my brain tumour might start growing again and maybe my asthma might start getting worse again,’ and you see so it’s, it’s difficult and then finding out that I’ve got Type II diabetes because I’m on steroids, it’s ugh, I feel like I’m juggling, and I don’t know what to do really.

I think a lot of it as well is definitely down to the medication and I’m saying this because previously I was never more than nine stone, ever in my life. Even when I had my children, I went up to twelve stone. I had them, six months breastfeeding, I was back down again. Yeah, I never really struggled through my pregnancies with my weight.

Okay.

I also was fit. I went to the gym three times a week. I was running, I was swimming and then I got sick and then started being on all these medications and a lot of them give you, make you put on weight.

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Wanting to see her children give her a grandchild was a reason for Lina to lose weight.

Age at interview 49

Gender Female

But just remember you’ve, you know, you’re on a path and it might not be a path you choose but you’re on one anyway and for the sake of your family, your friends, you know, you want to be here to see lots of things. I want to see my kids give me a grandchild, as an example. That’s an example or see them get married. You know, I’d like to be around for those things and if they’re saying for me to be able to attain a life so that I can see those things, why would I not want to do it?

Okay, that’s your main reason for

Yeah.

Yeah.

I’ve got to be here. I’ve got to.

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Lina takes steroids for her asthma which have given her a noticeable moon face. Reducing the dosage is enabling her to control her hunger pangs and reduce her weight.

Age at interview 49

Gender Female

Absolutely, there’s no hundred per cent but everybody who knows me, family, friends, they said to me, Oh wow, what’s happened and I’ve said, Well since I’ve started taking steroids and medication I’m just, this is what I look like and anybody that takes steroids it happens to us all, we get this face, this moon face effect. And I said to them, What it is, is your body tries to store fat in other places so it will shoot to your face, or the back bit of your neck or round your midriff area and unless I’m you know, killing it in the gym, it’s unfortunately is going to, that’s how I have, I have to get used to looking like this because at the moment there’s isn’t going to be a way of me, to be able to burn off that amount, that much amount of fat and that much amount of calories in my, my current physical state, so I’m just noticed I was getting bigger and bigger and when I got to thirteen stone, I was like, I can’t, I’ve got to try and do something. So hopefully, well not hopefully, it has, I have been losing weight. I’m, from 88 kilograms, I’m now 84.2.

Okay.

So, I have lost, I’m quite happy with it because it means that I’m losing. So long as I’m not gaining, I don’t care, I don’t mind. I didn’t want to get any further than 88 kilograms.

And this is just by controlling what you eat
Yeah.

ecause you can’t

Because I can’t exercise, so that just shows you, just simple changes in your diet can actually, can actually help because I’m, I’m no way going to be able to run on a treadmill [laughs]. I know, I know this until they come up with a plan that can get me off these medications, the most I’m going to be able to do is swim and I’ve have to be an Olympic swimmer to be able to shift all this weight in a set amount of time.

Do you have those, do you still have those hunger pangs or

No luckily, I fought damn hard with the consultants to bring my steroids down.

We’re trying to get it down to five milligrams. We’re at seven, so I feel that I’m heading in the right direction, so long as I, you see the problem is they get frightened because they’re like, Oh, you know, we don’t want you to have another bad asthma attack You know, this one could be the fatal one because that’s what you think, that’s what you know. You don’t know that particular asthma attack could be the one that puts you in hospital so you’re wary of taking your medicines down but I found that since I’ve gone down in my medication, my appetite is starting to kind of normalise itself now.

I have normal hunger pangs [laughs]. I still, I’m managing with protein shakes for breakfast, but I know that I’ve got to eat breakfast, lunch and dinner, that’s it and I maybe I’m allowed a snack and that’s it.

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