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Rose - Interview 33

Age at interview: 76
Age at diagnosis: 57
Brief Outline: Diagnosed in1989 and on hormone replacement therapy (HRT) for fourteen years. Currently on alendronic acid, 70 milligrams once weekly and Calcichew D3 Forte twice daily. Her bone density mass has improved particularly on her hips. She was also diagnosed with mastocytosis.
Background: Married with two adult daughters; retired secretary. Her involvement with a support group provided her with knowledge about osteoporosis and has helped her come to terms with the condition.

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In 1988 Rose had her first spinal fracture when she was fifty-six and she suffered another four spinal fractures a year later, Her fractures were ‘spontaneous’ meaning they were not provoked by anything she did but just happened. For instance, on one occasion she fractured when trying to get out of bed. Originally her GP suspected cancer but tests indicated that she has osteoporosis and x-rays revealed that her bones were very weak. In fact, she had lost thirty per cent of her bone mass. The treatment available at the time was hormone replacement therapy (HRT) and she was put on it for fourteen years. Later on when biphosphonates became available she was put on alendronic acid, 70 milligrams once weekly. Her bone density mass has improved particularly on her hips.
 
The pain she experienced is described by Rose as absolutely ‘awful’. She was bedridden and unable to do anything and says that she slipped into a period of depression. She remembers a sense of hopelessness, but seeing other patients in the hospital, sometimes much younger than her gave her another perspective into her condition. Rose says that she is a positive person but pain can and does alter your outlook on life. She still, sometimes gets a bit of pain but it is something that she manages by lying down and by taking a couple of paracetamol.
 
In hospital doctors also noticed a rash on her body and the biopsy revealed that she as a rare skin condition called mastocytosis. It is a proliferation of the mast cells and they do not die off as they should do and consequently congregate in different organs of the body, notably the skin. Her rheumatologist consultant recently confirmed to her that mastocytosis was the main factor in her developing osteoporosis. Her skin rush appeared around five years before she started having spine fractures. Rose has found out that people including health professionals don’t know much about it because it is such a rare condition. She is a member of the UK Mastocytosis support group. They do have a member’s website but it’s not available to unregistered visitors.
 
Rose was not happy with the care she got from her GP because he didn’t take her pain seriously and it took several weeks before she was x-rayed. He then referred her to an oncologist, but it was four months before she saw a rheumatologist and was admitted into hospital. Once in hospital she says that she began to receive the care she needed and felt safe. Since her diagnosis she has been in the care of a consultant and a dermatologist.
 
She became very involved with the work of the National Osteoporosis Society giving talks about her experience to nurses and other people to help raised awareness about osteoporosis. She also says that her involvement in voluntary work has helped her to come to terms with the condition because she says ‘the more you know about the condition the better you will feel’
 
The collapse of five vertebraes resulted in her losing height and consequently her body shape changed. Rose says that body image was one major issue that she had to deal with in practical and emotional terms. She felt very sad about it but says that her husband was and has been very supportive. She also felt embarrassed and very conscious about her protruding stomach. In practical terms she wears clothes that make her stomach less noticeable. She started making her own clothes and wears maternity trousers.
 
Rose feels that she has a normal life and pointed out that she and her husband go on regular holidays in their campervan, she does light gardening and sees her grandchildren and daughters regularly. She is reconciled with the fact that she can’t do certain things and stressed that the key is to pace herself and not to lift heavy objects.
 
Before being diagnosed with osteoporosis one important hobby of hers was walking. After leaving hospital she started going for very short walks along the road where she lives and gradually built it up to three miles everyday.
 
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Rose went to weekly hydrotherapy classes where she was able to do exercises in the water which...

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And the local group organises hydrotherapy classes at the hospital I attend. And until about a year ago I used to go once a week to those in the evening. We paid for it ourselves, you know, it wasn’t paid by the National Health Service. And hydrotherapy is absolutely wonderful. It just makes you feel good in the water. You can do things that you can’t do normally.
 
So you had one of the physiotherapists with you?
 
Yes, giving us the, the exercises to do. All of us do all sorts of things in the water, stretching, walking, doing everything you can think of. That’s, and I had a lot of that in the beginning when I was first diagnosed anyway.  
 
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Allow people time to get up from a lying position after an examination. They will be slower and...

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They should know that people are so nervous and frightened of having another fracture that they, that they should treat them very carefully. And I notice that lots of medical people, even the people who do the scans, think you’re going to get up from the bed like this. When you’ve got osteoporosis you can’t. You have to roll over and do it in a sort of special way. And lots of them don’t realise that. I mean, you know, some say, “Oh, you can get up” and think you’re going to get up. So they’ve got to realise that you have to, to get up from a lying position in a very special way and that people with osteoporosis are very frightened of fracturing again. I’m always, I’m talking about in the beginning, but even now I wouldn’t dream of getting up s-, s-, just from lying prone like that. It has to always be that position, you know, to do it and do it very carefully. That, that people will be a lot slower, you know. You see I, I realise how, how painfully slow, I’m really careful even now when I sit down in places, because it’s sort of habit really as much as anything. And, and, as I say, that I think is the important thing, to find out how the patient can get up herself, his or herself and not try and, not try and help them to do anything. Let them do it in their own time. But that really is the most important thing I think. Because I was terribly frightened of fracturing again. That was my biggest fear for so long.
 
So patients should, could do without that pressure of…?
 
Yes, they do, they’ve got to do things in their own time. Especially, do stress that bit about getting up from the lying position, the lying-down position that they have to roll over and get up carefully. I, I could demonstrate it, but you know what I mean. I think I’m explaining it all right. But people, people don’t realise that. Nurses don’t. I’m surprised. You know, they, they think you can just get up and that’s it.
 
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Rose has to make her own clothes and wear maternity wear to accommodate her new shape.

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So I gradually got to accept the fact that a) I was never going to look the same again. My shape had changed so much. I’d lost 5 inches. And all that has to go somewhere, so I’ve got a very protruding abdomen. And my back isn’t too bad, but finding clothes to fit was just a nightmare. In fact when I came out of hospital I only had one drawstring skirt, a huge sort of thing, and one blouse. So my daughter went to a charity shop and quickly got me a loose top so that I could have a change of clothing. So I had to find ways and means of looking reasonable with my changed shape, which was, you know, pretty horrible. And so I started making quite a few of my clothes. I’m not a very good dressmaker, but [laugh] necessity and all that. And I started buying maternity clothes. All my trousers are maternity trousers. And so with a combination of maternity wear plus making my own clothes I began to feel, you know, I was looking reasonable again. But, and also, I don’t know, you may not want to hear this, but I also started to do some publicity things to raise awareness of osteoporosis.

 

And, as I say, as for my shape, I’ve come to terms with that and I wear as many things as I can to, to look attractive, as attractive as I can be I mean. Not to, I don’t want to be conspicuous for the wrong reasons. That’s, that’s, that would be awful, you know. But I mean sometimes I know it does show.
 
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Rose feels sad about the changes to her body shape but the support from her husband has helped her.

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How do you feel about changes in your body shape?
 
Oh, I was very sad about it. And, but my husband was so supportive. But I felt so, so embarrassed with this awful protruding abdomen. And when I’m with my sister, she’s, she’s now tall, much taller than me. I used to be taller than her. And, and although people say things, “Oh, I’ve got a, a tummy now I’m older” it’s not, not the same at all. And being, if I’d been short always like this it wouldn’t have mattered. But when you’re short and you’ve got a bad back it’s a strain, you know, lifting. I mustn’t clean windows or do a lot of stretching up because it really creates quite a lot of, of backache if I do that. It’s sort of restricted in lots of ways. Which is, is a shame really.
 
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At first Rose was upset by her protruding stomach but now she has come to terms with her new body...

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My shape was I think the worst thing because, you know, you, you just don’t want to look odd. And I didn’t want to look as if I’d let myself go and was eating too much and not, you know. I feel like having a notice saying, “I, I’ve got osteoporosis. That’s why my shape is like this.” And once, I suppose it was only a few months after I’d been out of hospital, I was sitting in the park with my younger daughter and a woman next to me said, don’t forget I was in my late 50s, “Oh, when is your baby due, my dear?” Oh, that’s when I realised I wasn’t wearing a very disguising sort of outfit. But it is bad, I know. But I laugh at it now and, you know, I don’t, I don’t worry about it at all. I’m lucky to be alive. I mean this is the point, isn’t it? I could have got something and died. 
 
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Rose's consultant told her that mastocytosis was the main contributory factor in her osteoporosis.

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Mastocytosis is a sort of proliferation of the mast cells. I’ve got too many mast cells. Some of them are the wrong shape. And they don’t die off as they’re supposed to. And therefore they can congregate in different organs of the body. And by the, main organ is the skin. Which, which I’ve got. You can get mastocytosis which is only a skin problem. But that can often turn to systemic mastocytosis, where it affects other organs. And I’ve got the systemic form of it. So I do get problems with stomach cramps and occasional diarrhoea, that sort of thing. And another unpleasant effect of it is called flushing, where I come over really very very hot. It’s not the same as the hormonal heat. It’s a different sort of heat.
 

And who told you that mastocytosis was a major factor?

 
My consultant told me that. In fact he confirmed that to me a few weeks ago. I contacted him when this came and said, could he tell me whether it was the major factor or a contributory factor, my mastocytosis. And he told me it was the major factor and one that could be, well, it wouldn’t be looked for because it’s such a rare thing. And the other factor which is common to most people is the fact that I was post-menopausal. But the mastocytosis was the major factor.

 

But you see when I was diagnosed just, people just didn’t know about it and that was that. Doctors, don’t know about it now, consultants don’t know about it now. It’s, and it takes so many forms. You can’t have a, a mastocytosis consultant because it affect, can affect your, you know, your liver, your spleen, your, you know, with these anaphylactic attacks, you know, that sort of thing. And all other aspects of, of, it’s complicated. And some people have been found to have mastocytosis when they haven’t had the rash. So that’s, that was very difficult to, to diagnose.

 
And for how long have you had this rash?
 
Well, I had the rash for at least, at least five years before I was diagnosed when I was in hospital. Because blood tests revealed nothing and no one knew any better.
 
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When recovering from her fracture Rose experienced a bout of depression which made her feel...

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And how did you feel when they gave you the diagnosis of osteoporosis?
 
Well, I was too ill really to, to feel anything. But the pain, the pain, I can’t describe the pain to you with five fractures happening so soon. I just felt so full of pain all the time. I don’t know, I just, I felt devastated all the, even when I was in bed, you know, trying to recover from the fractures, I felt devastated. And at times, well, at one time I got very, very depressed. I didn’t tell my husband that, but he knew I was. I couldn’t think about anything. And I couldn’t listen to the radio or the television or anything. And he said, he removed the tablets from my side of the bed. I couldn’t sit out you see. But I wouldn’t have dreamt of doing anything like that. But I really did go through a bad time with depression. It was probably just a few weeks, I don’t know. I felt sort of everything was hopeless, you know. I think quite a few people with osteoporosis suffer from depression. But I’ve never suffered from it before or after. Because I’m a very positive person, and as soon as I knew there was something I could do to help myself, I did a lot of fund-raising for osteoporosis, jumble sales, writing begging letters and all, all sorts of, raising a lot of money. So I, I believe in being positive about everything.
 
But it was that period when you were in a lot of pain?
 
Yes, a, a lot of pain. You can’t, you can’t be positive then. And that was before I knew that, before I saw the consultant and knew there were the, all these things I could do to help myself to live a, a reasonable life again. I wasn’t going to die. Which, I know it sounds ridiculous,

 

I didn’t talk to anyone. When you feel really low, you don’t feel like talking to anyone. I didn’t feel like, I didn’t, I just felt empty and I couldn’t talk to anyone. I couldn’t even talk to my husband. So I didn’t, couldn’t do anything. In fact, you know, your mentioning it now sort of just brings it back. I just, I just felt hopeless and helpless. And perhaps this is why I feel so sorry for people who get depressed, because I’ve got an inkling of what it’s like. Although I’m sure some people must get it worse, a great deal worse than that. But, no, I couldn’t talk to anyone. No, you just feel everything’s hopeless. 

 
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Rose feels positive about the future because of the greater knowledge now available about how to...

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And suddenly I realised that osteoporosis was treatable and that, and already I was feeling a lot better after having hydrotherapy and physiotherapy. And I then realised that it wasn’t so bad after all, that, you know, I had some, had some good life ahead of me. And I realised that when I came out of hospital and things started to improve really, well, almost dramatically once I started to walk again. And I went on holiday in our caravan and I was able to walk a bit and sort of enjoy life. And as time went on, it did take a little while because I had, remember I had five fractures, and as time went on I, I joined a local group and did all sorts of positive things. And so although it’s pretty awful at the time when you have your fractures, they do heal eventually. And if you’re lucky you don’t get too much pain in the future. And you can always do things to alleviate that. You know, take a couple of painkillers or, or just have a sit-down or even a lie-down for a little while. And so I think osteoporosis is, although it’s not very nice, it’s, it is controllable and you can eventually lead a, quite a normal life.

 
 
What are your feelings about the future?
 
Well, I feel quite all right about the future. Because now we’ve got so much awareness of osteoporosis and so many drugs available to help people, I think, you know, we’re very lucky indeed. And I think of, you know, when I was diagnosed, when there wasn’t anything. And now they know all the right things to do, you know, the exercise, the diet, everything, I think, I think the future is quite, quite good.
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