Emma - Interview 14

Age at interview: 61
Age at diagnosis: 47
Brief Outline: In 1984 Emma had a hysterectomy. In 1992 she complained of severe headaches and was started on hormone replacement therapy (HRT). Diagnosed with osteoporosis around 1994-6 following ribs fracture. Current medication' Strontium ranelate (Protelos) 2 grams every night. Emma also takes omega 3 and cod liver oil.
Background: Widow, works full-time as an office administrator. Lives with her two adult children and has an active social life. She has noticed some improvement since started on Strontium ranelate.

More about me...

In her mid-thirties Emma had a hysterectomy. In 1992 she started to experienced severe headaches and her GP put her on hormone replacement therapy (HRT). She said that her headaches stopped and had a good quality of life, was able to continue working full time and had more energy than before HRT.
Her diagnosis of osteoporosis came around 1994-6 following rib fractures but at the time she was not put on any medication. What is more, Emma wasn’t particularly worried and didn’t think it was necessary to have a specific treatment for her osteoporosis. She said that everything she read in magazines gave her the impression that HRT was all she needed to protect her bones. In 1999, following a trip to the USA she was advised by her sister’s doctor – her sister also has osteoporosis - that she should consider taking specific medication for her condition.
Emma says that osteoporosis began to affect her gradually and one of the first things she noticed was an inability to carry weight. Even a few pounds gave her a severe pain in her back and since then as she put it she has “gone down the drain”. In 1996, she began to have bone density scans every three years.
Her current medication is Strontium ranelate (Protelos) 2 grams every night. She says that the one side effect she has is diarrhea. Emma also takes omega 3 and cod liver oil. Emma has noticed some improvement in her condition since starting her drug therapy like being able to stand up a bit longer; she feels a bit more balance when walking and less pain. But at the same time she says that she now lives with limitations for instance she cannot longer go to work using public transport because she can’t stand for long periods of time or walk long distances.
Her social life hasn’t been affected by her condition. She belongs to a religious group and she attends the temple at weekends and takes part in other organised activities. She drives and feels that it provides her with a sense of independence. Emma says that her son and daughter are very supportive.
Since she found out about her bones problems she started to attend exercise classes regularly. She did Pilates, yoga and some aerobics. Now she has joined a health club and has been doing some weight bearing exercises. She has noticed that her grip is better and overall feels that exercises do her good.
Emma says that she wishes someone could have provided her with more information and advice about osteoporosis after she had her hysterectomy.

Emma is taking strontium ranelate and would like her GP to refer her to have a scan more...

And how many bone density scans have you had?
I have got a few. Every three years since 1990, since 1990 I think or 19… yeah.
What are they revealing sort of in term of your…?
They have gone down. Each, each three years when they do the density’s gone completely down. Very bad.
And last I had only last year. One, the last one I had last year and I think since then my doctor has put me on Protelos. The medicine that I’m taking for my bones.
How does the doctor explain to you your density scan results?
He just said that it hasn’t like, I’m on HRT all the time but it hasn’t work a lot. That’s why he put me on the Protelos, that’s what he said. That’s why he put me on the Protelos now. But the radiographer in the hospital, she said that actually they should take my, every two years or even a year, so that they can keep an eye. If it is not, they, they can do something about it. But I don’t know what they can do something about it. But radiographer told me that they must, put me through the consultant, so that they, they can do something about it quicker. So, but I cannot understand, I cannot make my doctor understand.
No, he has only told me that it has gone down. I don’t’ understand exactly what this bone, it only says the figure says that it is more deteriorating rather than steady.
And do you think they are going to change how often they do the bone scan?

I don’t know, I haven’t, I never had chance to talk with my doctor. I will ask him again, that is he going to do it earlier or not. Because in between, a little while they, nobody did anything… about my bone scan. There was gap of long period. Hmm.


How long?
Maybe more than five years, because I had in 92, that started, then they had once, so far I have only three times.
Since 92?
Yeah. Three or maybe four times. This time it was fourth time. So there was a big gap in between. But now I'm going to, I think I will have to insist my doctor as well. 

Emma was convinced that her HRT treatment was preventing bone loss.

And then at that time doctors said that I should, I may suffer from Osteoporosis. She explained to my GP. And my own, my GP always said that I had problems with the bones. And I should be careful. And that’s it. Nothing else happened. And I was on HRT so I thought it was helping.
And then and again once I had an accident. And that accident was so severe that I had, I fall off a ladder. And it, the back of the ladder poked me at the back of my ribs. And which hurt up to the sternum in the front. But no x-rays were taken. The problem was that no x-rays was taken. They said no you don’t need an x-ray. We don’t, my GP was thinking that she doesn’t want to put me into the radiation again and again because my conditions are already bad. There’s no point of taking these x-rays, so long as we know what is happening. And that’s it. I was only given painkillers all the time. And nothing happened.
And then in 1999, I went to America to see my sister. And my sister suffers from osteoporosis. And I went to, with her to the hospital. And she just introduced that this is my sister, she comes from England. And she has a problem but she is not on any medication. And the doctor asked me that is why is they haven’t given a medication. And a medication called Fosamax is very good. But probably in England because it is very expensive they will not be giving you. But I wasn’t sure. But I did tell the doctor that I haven’t had any problems because I’m on HRT. So I don’t need any other medication as far as I am concerned because wherever I read in the magazines or any some articles about my bones, osteoporosis, it doesn’t say that I need to have any other medicine because I’m on HRT. So that was it.
But when I came back and when I’m, when I used to hold some, any little thing, even a baby, and that was a time when I was holding a newborn baby, at that time I could not hold a newborn baby. The newborn baby was only about eight, nine pounds. And I could not hold it. I had a severe pain in my back because my ribs were already very weak.

Using a home massager helps to ease Emma’s pain and she can use at any time of the day.

You mentioned massage, do you use any type of oils that you think might help or...?
My aunt gave me that oil, yes, I used to use it. I don't know what it is called…, because she used to suffer from all this things. So sometimes I used to put it for her, so once when I had a problem, she gave me that. It's a special oil, and you put it, in, on, around the, like a if I have a knee problem, then I can put around there and do the massage.
But at the moment I've got this massager, I bought it recently. It's the best one. And I can do it myself. You know, when I get my pain in the back, and I always have to rely on my son, but then it’s, I, it doesn't feel good that you have such young boy and you tell him to do this. But, and this is good massage. And there are different things, even I can do it easy. She said to me not to do in the front a lot because this affects your heart beatings as well, but there is a, I can change it.
Where did you get it from?
Ideal home exhibition. And they were selling the, it says professional pounding massager and it really helps. It pounds the bone as well and it helps, this is very good.
Have you talked to your doctor about it, that you are using it, or...?
You know I forgot to tell him this time, that I, but I haven't told him that, that I've got, but rather than, I used to have another massager, but it wasn't so good as this one. But this is one of the best. I can put it even on my feet here and do it. This is something I can do it myself. You don't have to rely, if I leave it like this and do it myself as well. So, because if I'm in a pain during the daytime and nobody is here I can do it myself.

Emma’s sleep is affected because of pain which leads to her feeling tired but she thinks it is...

When I’m in the bed relaxing, if I have done a very heavy lifting, anything, not heavy lifting as like heavy bags, but if I do a heavy shopping. Before when I did not know that this weight was affecting me, if I do shopping and come back, then at night when I sleep I used to get a pain in my chest exactly in the middle as if I’ve got a heart attack. And that pain doesn’t go. I cannot sleep. I cannot sit. I cannot do anything. Tossing and turning. Can’t do anything. Just getting up and down. Getting up and down. Sometimes I come downstairs, sit here. Can’t relax. And then go back again sleep.
And I get painkiller. And then pain, after the second lot of painkiller, the pain releases. And when the pain releases within a second my eyes close down. Then I don’t know what’s happened. And then I wake up after about seven o’clock or eight o’clock.
But my pain always starts like one o’clock, two o’clock until six o’clock in the morning. Or maybe five o’clock. And as soon as it release, the pain release, then only I can sleep, for a few hours.
So you sleep very little?
That’s the reason I can’t sleep continuously at night.
So on average how much hours do you manage?
I do manage to sleep about five, six, six hours, five, six hours. But I wake up in between.
Only recently since I’m taking Protelos I don’t wake up at night as such. And now I don’t do any heavy lifting at all because I know that I can’t do it.
During the day I feel tired. I yawn a lot sometimes. And then that’s what I feel. But I think now I’m so used to this, this type of life. It’s only since last, I think since one year since I’m taking this Protelos I feel better. And the painkiller helps as well with it.
But I do full five days because I don’t want to keep one day off. Because with osteoporosis if you don’t work one day, the next day you down very quickly. You’ve got to keep yourself active all the time. Relax in between. I do my work, relax and do my work, relax.
Even while cooking I have to sit down. I cannot continuously stand. So I will cook. Do a little bit of work. Come and sit down. Do something while sitting down, my paperwork or something. And then I work. That’s how I do my work. But I, I don’t stop thinking that oh, I am in pain. And I do this. I don’t do that. I just do continuously work.

Emma gets headaches when she is at the gym and she is unsure what exercises she should be doing.

So now I have recently joined since last year, I have joined keep fit, [Fitness Club]. It’s a gym. I only go there and do walking. And do some cross training. And that’s two I can do. I can’t do much more than that. I would like to do some weight training. But the trainers, they, they don’t know themselves sometimes what I can do and what I can’t do. So I try to take some sort of advice from them. Or I ask my doctor, mostly I ask my doctor. And I tell him that I have joined the gym now. And I’m doing this and I’m doing that.

And because last year when I could not even hold even a glass or mug, coffee mug. My hands were so weak I could not even the glass of coffee mug. Since then my daughter told me that I should do some weight training. So I started with like ten grams, twenty grams, those weight training. And I do that even at home. And I, it helps me a lot.


And how often do you those?
Practically every day when I’m sitting and watching television. But when I go to gym I started doing weight training with them, I had to come out of it because I started getting headaches. And those headaches are either from due to the work related as well as weight, I’m not sure. That I’m working on it now to find out whether it’s, what is the reason. Because I had a change of my desk at work and I started weight training. There were two things together. So it is very difficult for me to pinpoint. To find out exactly what is the cause.
If there are some treatments then good, they should tell us. And even if I go to the gym now I’m doing trial and error, I don’t know what to do at the moment. There should be some medically, who can tell us exactly how, what sort of exercise I should do. So that I don’t get headaches. If I do too heavy things then I get problem with the head, these headaches. I don’t know whether headache is because of that or headache is because of the work-related, I have to identify that myself.So somebody should be there to guide me.

Emma doesn’t want to be a burden to her children.

That worries me sometimes, yes. I think I will become a burden to my children or a burden to some thing, somewhere, or a nursing home or somewhere that I will feel that… They must be doing for me probably but I will feel that I’m a burden to them, that’s what it’s going to feel eventually.
So that’s your concern? For the future?
Future, yeah.
Have you talked to them about it?
No, I haven’t talked a such but I have mentioned to them that if anything happens and you can’t manage, please put me in a nursing home, I don’t, I won’t mind. I know that it will be last place I would like to go but I try to be independent. So, I don’t know what’s going to happen but my son is never going to leave me, I know that, because he thinks that I need somebody needs around me all the time. But still, he needs to have his own life when he gets married or anything.  

Emma can no longer travel to work by train so now she drives.

Walking is the main part, has gone down completely. Before I used to walk from my home to the station and from station to the if I go by train, then to the work. But that doesn’t happen. The first thing is that I don’t have that much, gradually what happened that I needed some help to climb up the trains and everything and you don’t get that help. So because of that reason I don’t go by train. So that’s a limitation. I can’t go by train and specially the trains which has got very high platform and there’s a gap between the, that is impossible, that I can’t go. Climbing up the stairs I used to do very quickly. I can’t do that at the moment. Only I can do like first floor. I try my best to go up to the first floor and then I can’t do it.
So how do you manage to go to work if you can’t take public transport now?
I go by car. I’m very lucky to have a parking at my work place and people who have, I get letter from my doctor that because of my disability I cannot walk. I’ve got limitation of mobility and because of that reason I take my car to work. And now I have bought this house in a way so that I don’t have to work very far, because sometimes I used to carry my shopping for about two, three weeks or maybe month in the car, and the one thing at a time and when my son comes he used to bring the things in the house.

Emma’s GP reassured her that her vegetarian diet was a healthy and good diet for her osteoporosis...

Actually I was all the time born a vegetarian but when I came in this country I started eating meat for a while. And then suddenly when I lost my husband and he had a kidney problems and all those things then I realised I should not be eating too much meat and everything. Internally I didn’t like very much, because I myself is a, work I have done nutrition myself. So I stopped eating meat. So is my son, so is my daughter. And so we decided to become vegetarian. But I am very conscious what I eat so that we don’t lack any sort of vitamins.
And my first doctor was good as well because when we used to ask him what to eat and what not to, he said, “You should eat everything, balance everything so don’t worry what you are. Don’t worry that you are vegetarian that you are suffering, it’s not like that.”
So you eat pulses?
Like lentils and things?
But my GP, first GP was good. She used to give example of my own father-in-law because he was 97 at that time. So she said, “Look at your father-in—law, he’s 97, has he ever eaten any meat?” I said, “No.” So he said, “OK, then, just think how he is good, so you can be good as well, if you eat properly.” And that’s it. But she never used to say, “Yeah, you should eat meat.” Or anything. So I thought our food is good, so why can’t we eat a balanced diet? 
But recently I have started taking omega 3. Omega 3?And cod liver oil. Because that helps my bones. To me I feel that that helps a lot. Pain is less. And I have cut down my painkillers, a lot of painkillers.
Since I’ve taken this omega 3 and cod liver oil. 

Emma belongs to a temple where there are a lot of social activities that she gets involved with.

I am on my own for so many years now. I am a widow, since many years, when I was only 32, 33? And since then I have always worked on my own with, around my kids. My kids, when they, they are grown up now. So I have got, like, a religious group. I belong to a temple. And I usually go, for them, I can go everyday in the evening to do some religious singing and gathering like that. But I go every weekend on Saturday and Sunday and we go quite a lot of outings as well, they take out. That is the best part of it. Because we are vegetarian as well and I am vegetarian so when we, when I go out with them I don't have any problem of eating or anything. So everything is catered and I go out with them. And weekends go past very quickly because I go and, and I, one good about me is that I am younger than many of the people in the group so, and I have a car so I take them to different places where we go for singing so we go like that. So I feel better as well.
So you have a, a good …?
My social life is very, very busy. I can say no sometimes, that no I am not coming this weekend because I am tired or maybe I have to do something else.
So you keep very busy at the weekends?
Yes. I can tell them no, every, even in the evening they have got quite a, different places they go. So even if I retired, when I retire, I will have a social life as such. But I need other activities as well, apart from that.
Financially I am so lucky at the moment that I’ve got my son who, who help me to pay the bills and everything so that has made me my mind fixed that yes I’m going cut down my working hours now and look after myself and do some other activities. Now because my daughter is with me that helps a lot as well. Otherwise it would be very difficult financially.
But financially otherwise it would be very difficult. Because you have to rely, you can’t go with the public transport. You have to rely on so many other things. And if you don't have a car then it’s very difficult to… To me, I think I would not have survived I, if I have, have not driven. Then my social life will be nil, I won’t be able to go out on my own. At the moment I can go out on my own because I go. I have a car, I am driving.  

Emma had a hysterectomy around 1984 and was put on HRT in 1992 after complaining of severe...

I had a hysterectomy in 1984…’85 approximately. And I was fine after that. I had no problems, nothing. But in 1992 I had started having severe headaches. And headaches were so bad that I could not cope at all. Even the painkillers wouldn’t, wouldn’t make any effect.
And then I had a sort of… I had a heart problem type thing… that I was I was going to have a heart attack. So I went to the doctor’s. And I told her that I sometimes I feel so hard at night I cannot breathe and I feel that I’ve got a heart attack. So we started looking into it whether I had any problems. And I think my GP under, understood me immediately what is the problem. And she said, “No you do not have a heart attack.” Because she took my blood pressure and everything and there was nothing wrong it. And suddenly she said I because of my hysterectomy I must be suffering from some sort of lack of hormones. And she started, she wanted me to put me on a hormone treatment, which we started on hormone treatment in the beginning.
And since 1992 onwards I had a very good life. I did not have any headaches. I did not… I had more energy. I was working full-time. And no problem at all.
And then at that time doctors said that I should, I may suffer from osteoporosis. She explained to my GP. And my own, my GP always said that I had problems with the bones. And I should be careful. And that’s it. Nothing else happened. And I was on HRT so I thought it was helping.  

Rather than giving up, Emma tries to find alternative ways of doing something she finds difficult...

And doing things around the house?
I used to do even gardening myself. I do now, I sit on the floor and do the gardening because I love doing gardening. But gardening I can’t do. I cannot do the Hoover because of my ribs are broken and I get such a pain if I do that. I cannot mow the grass. I cannot do heavy lifting at all, not at all.
I used to carry four pint of milk, now I cannot get it, that four-pint of milk. So anything to do with more than a pound or so I can’t do that.
OK. So lifting a saucepan is a problem?
Lifting, that was a time that lifting of the saucepan was a problem for me. I could not lift the saucepan from one burner to another or from there to the table or anything that I can’t do. I try to do it now so that I make my muscles a bit stronger because of, I do weight lifting now. So I can do, hold it but not as good as I used to do it.
Due to my exercises I can do it better now. So I can say exercise is the best for osteoporosis people. From day one, as soon as I think, if a woman know, knows that they have a low density or a medium density, whatever, I don’t know exactly what it is the, we should start doing exercise.
Lifting of my arm, I cannot lift, I can lift this right arm but this arm I can’t lift.
OK. And bending you knee?
Bending and kneeling, I kneel down on my knee because whenever I do work I adopt myself. If I can’t do bending I just bend down on my knee and I work like that. But then I have to get up very quickly because it’s so, and then I sit on my bum for a while. That’s a, that’s the main part of it, that’s why I can’t do my gardening very well. But I still do it. Slowly and slowly.
Hoovering I don’t do. I haven’t done for the last two or three years now. Here I have got carpets but in my other house I had wooden floors and that helps a lot to keep it clean because I can’t do hoovering at all.
Mobility’s very low. I can’t walk very far.
How do you feel about these changes to your daily life?
Because I notice they’re all the time in everything, I adopt the changes. It doesn't affect a lot to me. If I can’t do certain things today and I don't have anybody to rely on, I try to make way how to do it. So you, you have an alternative way to do it. That's what I do. So I can’t say that it affects a lot. For a few days I will figure out and see how I can do it. If I can’t do it then I have to take a help with my son have to do it. But mostly I just adapt myself. To do it, the ways, how to do the different things.

The council where Emma works provided her with a special desk, chair and other equipment but she...

And at work what happened, you changed your desk?

What happened is that we had, the management keeps changing the section. So and I have got a special desk for my, for myself, which I have got from my, since I had my broken ribs and everything. I’ve got my special chair and a special desk. So they had to move the desk. But before they moved the desk, I moved my place. And it took nearly two to three weeks for them to move the desk. While I was sitting on somebody else’s desk, my headaches started. I started really heavy headaches. And headaches were so severe, so severe that even the painkiller could not give me any sort of relief. And if you keep on taking the painkiller then next day you cannot even open your eyes. It becomes very drowsy after, the whole day my eyes are heavy and drowsy, I cannot even open my eyes. The lights affects and everything affects them.


So then I, now I have got my desk back and luckily when I moved my desk, the same day on Friday, last Friday, I was very good. I did not have any headaches. Since last Friday I haven’t got any headache yet. So now I’m, I need to find out what is the problem of this headache which I have, I had talked to my doctor. So my doctor thinks that it is a work-related as well.


Yeah, I need to have that assessment again. So I am going to have that assessment again.
My employer is going to do that. And usually we, I was told even the old are advised that as soon as we move the desk, we change our work and anything we must have that other assess, or  work-related assessment done as soon as possible. 
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