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Betty - Interview 31

Age at interview: 81
Age at diagnosis: 77
Brief Outline: Betty was diagnosed in 2004 and was initially put on Fosamax but then changed to Pamidronate infusions every three months. She stopped her treatment for two years because she no longer was able to use public transport. Her new hospital is nearer and her daughter drives her there.
Background: Widow, retired secretary, lives on her own flat in sheltered accommodation. Betty uses herbal medicine extensively and has accumulated a great deal and knowledge about it.

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Her back pain started three years prior to her diagnosis in 2004 when she just bent down to get something from a cupboard. Her pain seems to have been made worse when an unqualified osteopath manipulated her back. She also noticed that exercise and physiotherapy increased her pain. Betty says that her back problem has gradually got worse and her mobility has decreased over the years. Betty thinks that her arthritis has contributed to her disability not just osteoporosis.
 

Her diagnosis came about when she paid to have a whole body MRI scan done four years ago. She was referred to a rheumatologist and she was initially put on Fosamax but she suffered with very bad bloating and her treatment was changed to Pamidronate infusions every three months. Betty says that after each infusion she feels a bit rough and has noticed that her skin gets drier. 

 

In 2006 she stopped taking medication for two years because the hospital was too far and she no longer was able to use public transport. Recently she has moved to another hospital which is nearer and more accessible and her daughter drives her there.
 
Betty doesn’t have a maternal history of osteoporosis and the only risk factor that she can think of was triggered by her seventeen years of taking an anti-depressive drug called Tryptophan. She was diagnosed with a mental breakdown after her youngest son was born. She came off this drug by her own volition; no health professional offered any assistance. This whole experience has left her with not much faith in the medical service.
 
Her back has become increasingly painful and her mobility is limited. Around the house she manages with the help of a cleaner once a week who also helps with her laundry. She uses a computer and does her main grocery shop on line, once a week which she says is conveniently delivered to her kitchen. Also, twice a week her local Council provides a dial a ride service which takes elderly and/or disabled people to main supermarkets in the area.
 
Betty says that her diet has always been healthy with plenty of fruit and vegetables. At the time of her diagnosis she hadn’t been eating dairy products for ten years. Her diagnosis changed that but now drinks goat’s instead of cow’s milk.
 
Betty has used complementary medicine for many years; herbal medicine, Bach flower remedies, acupuncture, etc. She treats pain and other ailments with herbs and has acupuncture sessions every fortnight. Betty says that this technique helps her to relax and helps with the pain as well.
 
Betty is philosophical about her physical limitations and her attitude is to accept it and do what she can and make the most of it. For instance, she and friends go regularly to see the new productions presented at their local theatre.
 
She has a daughter who lives nearby and she is the one who takes her to her hospital and other medical appointments. Her grand-daughter also helps by taking her shopping sometimes. Her other children live in other parts of the UK.
 
 
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Betty lives in the outskirts of a big city and it takes her around one hour to get to her...

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He then suggested that I tried Fosamax but this gave me horrendous bloating which I’ve now discovered was because of the artificial sweeteners that are in them which disagreed with me in any form in food or in tablets. I went back again and in 2004 he recommended infusion of Pamidronate.
 

 

I had them for two years. I had eight of them in two years and then due to the transport problems in getting to [name] hospital in, no, sorry getting to the hospital in the centre of [city], due to the bombings and everything and also my increasing disability I couldn’t travel on the tube I had to stop treatment because the hospital was right down in the centre of [city] and on the central line. The last time I went there was in July 2006. I then saw the specialist again there. He said, “Oh oh, leave it for a year.” Was twenty second of May 2007 and said then when I saw him that I really couldn’t manage to get down into [city] because my daughter had to come with me that time.

 
And I then got referred to a doctor a specialist at a hospital which is about twenty miles away from here but it’s outside the M25 so therefore my daughter can take me in the car and we can park in the disabled space at the hospital, very easily.
 
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Betty uses many complementary therapies. Acupuncture helps her the most because it helps her to...

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But I use various herbs for relaxing. I’ve got a calminite tablet which helps you to relax to go to, to have a good night’s sleep. Laxatives I tend to use herbal if I can.
 
Say supplements I tend to, I’ve got another very good company in [city] which gives you they’ve got a very, very good catalogue and I was recommended to them by dietician, a natural dietician, not the health service. When I first came here she used them and they’re excellent. They have a wonderful, you can always ring up their service department and they’ll give you any advice as to what things go together and what things not what affect things have. And for things like specialised acidophilus and things like that. They they’re excellent because they have extremely high standards of production and everything so I tend to research rather than go and buy at the local multiple store.
 
So you phone them to place orders?
 
I phone them and oh yes, I mean the herbal place you phone before
one of a day and the thing’s here on your doorstep the next day. You have to pay postage but what’s two pounds for postage when it costs me eight pounds for a taxi.
 
And you have been using complementary medicines for quite a while now?
 
Oh, for many, many years now yes, yes, yes. I got, oh, must be I suppose around the time when [daughter] was ill which was when she was eighteen so that’s over forty years, thirty, forty years ago when I first started being interested in complementary medicines and yoga. And things like that.

 

What helps with the pain and discomfort? Have you found anything that helps? Resting?
 
The acupuncture in the best help. Because it makes you relax and again, you have to be very, very careful on the acupuncturist. I’ve got an extremely good lady. She was trained in the East many years ago. She’s a fully qualified doctor in it and she’s been practising over here for twenty years so she’s a very, very qualified person. But I have tried some here locally. One, I was absolutely horrified with. He had to consult his book as to where to put the needles in and yes, he was on the official register because I wouldn’t have gone to one without looking up the official register. And I also tried the centre [name]. They were excellent but they were all young doctors from China recently qualified and for me, the treatment was too strong. It didn’t seem to be adjusted for the Western metabolism. I imagine they trained in the East and they were used to their diet and treating with the diet of the people over there. It might have been better for a younger person but I found it was too strong for me, made me very tense. And the people themselves were lovely. Some of the therapists were absolutely gorgeous. But it just, as I say, it was too strong, a treatment for me.
 
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Before she was diagnosed with osteoporosis Betty's acupuncturist who was also a trainee osteopath...

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Yes, I think the first signs I had of back problems were about seven years ago when I bent down to a cupboard under the sink and my back went. I felt it click and I had bad, very sore back. The next day I had to go shopping with the shopping trolley and that aggravated it and made things very much worse, definitely. That was the start of all the problems. I then sought private treatment with an acupuncturist who I was already attending but who also did some manipulation, minor manipulation, and he tried to relieve the pain in my back. And one day after the treatment I felt completely weak and my back the strength had gone and I knew something serious had happened.
 
To be quite honest, I felt too ill to go to my old doctor and make, loathed very loathed to visit here, you can’t get them to visit for love nor money. And so I just stuck it out myself and thought, “Oh, it will get better in time.” I still had terrific weakness. I couldn’t fill, pour water from the kettle without difficulty. I couldn’t lift up a kettle because of the weakness. I had difficulty opening doors and things like that.
 
As I say I didn’t go back to the acupuncturist again but I went to physiotherapy at the same place and they knew what had happened. But he was a youngish man and I didn’t want to make any problems for him because he’d obviously been trying his best. He was training as an osteopath I know but I don’t think he’d completed all his exams at that time. So it was really my own fault for employing an unqualified osteopath as I know now but we managed reasonably well.
And I say I’m very lucky, my doctor I consult him about everything I do. I tell him what I’m proposing to do and say, “Is it all right with you?”  
 
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Betty's level of disability has increased significantly over the last six months but she's not...

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And all this had added to my disability because my knee has now got twisted, this has nothing to do with osteoporosis, sorry my knee has now got twisted and I’m having I’ve just got some new insoles but not from the hospital.

 

I’m now trying to train my knee and my hip into the new way of walking which I hope will be successful and I shall be able to get about more with less pain. Because I’ve developed terrible sciatica and everything as a result of everything being twisted.
 
Since last winter you started having this pain?
 
Oh, I mean I always had it but it’s the disability has increased tremendously over the last six months.
 
The general disability and the general stiffness and difficulty in getting into cars and things it’s. I’ve always had to be very careful whose car I get into. It was three years ago, I got into the back of a two door car… and my back went so bad on me that I couldn’t go away for Christmas. I was more or less crippled round the house for a week afterwards. And then it gradually eased.
 
Oh, my back has got increasingly more and more painful. It’s obviously I know I’m getting shorter and shorter. Obviously the bones are getting more and more compacted and therefore it’s getting more and more painful.
 
Like if I sit, I’m all right sitting here because I’ve got a cushion at my back but if I try and sit against a hard board the pain in my back is terrible.
 
I don’t do as such, I don’t.  I used to. But nowadays I can’t lie in bed flat on my back so much.
 
Why? Because it hurts?
 
Because it hurts, yes and also my hip is going out on me it goes into spasm at the moment and it’s all I think related to that knee. Or related to the foot where the arch was going over so badly. And I was walking with my foot out and my ankle nearly touching the ground and say I just got some additional insoles which are helping. But I’ve got to retrain all my whole knee and my hip. My hip certainly feels better since I’ve got these additional arch
 
And it’s so difficult to know how much is normal ageing and how much is osteoporosis. And how much is osteoarthritis.
 
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Betty feels rushed during her GP appointment and wishes there was more time for discussion.

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They need to have far more discussion with their patients. I know it’s a question of time. You get ten minutes at the doctor and not a minute more between appointments. It isn’t time to discuss anything. You go up with a problem and you come out and think, “Well, I didn’t really resolve that, there wasn’t the time.” And this is the main, main problem everywhere is time. When you’re older, particularly unless you’re organised enough, which I used to be, but I haven’t been quite so much lately, you know, to get a you need to put down a list of everything you need to ask. Otherwise you find that you come out with not the answers to half of what you wanted to say and anyhow they haven’t really got time to listen to.
 
You need to go up every week almost to tell them a different fact to get everything resolved otherwise when you do go you only get the answer to one problem that you have wanted. You just need more time and much more love TLC shall we say.
 
It’s everything is so rush, rush, rush these days but that’s a complaint of the whole of society I think. It isn’t purely the medical profession.  
 
 
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Betty uses the Dial a Ride scheme to get about or sometimes she takes a taxi.

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Due to the transport problems in getting to [name] hospital in, no, sorry getting to the hospital in the centre of [city], due to the bombings and everything and also my increasing disability I couldn’t travel on the tube I had to stop treatment because the hospital was right down in the centre of [city] and on the central line. [traffic noise] And that was in the last time I went there was in July 2006. I then saw the specialist again there. He said, “Oh oh, leave it for a year.” Was twenty second of May 2007 and said then when I saw him that I really couldn’t manage to get down into [city] because my daughter had to come with me that time.
 
And I then got referred to a doctor a specialist at a hospital which is about twenty miles away from here but it’s outside the M25 so therefore my daughter can take me in the car and we can park in the disabled space at the hospital, very easily.
 
And I try most weeks we’re lucky here we have the local council and the [city] Transport organises services for the disabled and older people. And we have a dial a ride which you can get and we go as a group from here and we go to two different shopping trips, trips, one on a Thursday and one on a Friday. And you sign up and you can go on that which is a tremendous help.
 
And where do you go? To a supermarket or.
 
Yes, yes there’s two. We go either to [supermarket] or [supermarket.] One day to [supermarket] one load to [supermarket]. I would have gone today but with you coming I couldn’t so I signed up for [supermarket] tomorrow so I’ll pop down. But I got my big order up yesterday, my big order that came up and.
 
And that is every week.
 
It goes down every week, yes, yes.
 
Oh, that’s good.
 
Oh oh, it’s very convenient.
 
Yeah.
 
And then [name] Transport as such organise you can sign on with them if you’re sufficiently disabled and they do a very, very good one and to one service but you have to book about a week ahead to get the specific time you want. But if I have to go up to the acupuncturist or anything on my own if my daughter can’t take me or if I have to go anywhere else I ring up a week before and the transport actually comes to the door and they’re extremely good. If you need it they have a lift at the back that you can go up on a lift. It’s really designed for disabled people.
 
But you can only have one return trip a week. That’s, that’s minimal cost, it’s one fifty for up to five miles I think it is which is great.
 
But you need to book it in advance.
 
Well, yes I mean.
 
A week in advance?
 
To get a specific time you need to book a week in advance.
 
Okay.
 
You can ring up and say, “Can you do it any time tomorrow?” But you with [company name] you’d be lucky if you get it. Dial a ride is not quite so difficult but even then it is very difficult to get occasional bookings particularly if you need a specific time. So like for the hairdresser, if I go to the hairdresser at the top of the road, you have to have a taxi which is four pounds each time. Eight pounds return, you know, which adds to the cost and you have to do that to go to the doctors. It’s just impossibly expensive.  
 
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Betty gets involved in many of the social activities organised in her sheltered accommodation but...

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Yes, it’s our, its all our own all our own individual flats. We each buy our own flat but you have use of communal areas. We’ve got a lounge downstairs with a little kitchen and we’ve got a recreation room upstairs.
 
Do you have some activities for residents?
 
Not very many now because people have got older and older and less able to do things. We used to have far more when we came here and apparently when they first started fifteen years ago there were a lot of activities here. We used to have whist drives and all sorts but those have all gone by the board because there aren’t enough people to take part or willing to take part. We have a bingo session once a fortnight which I’m not a bingo person but I go to because it’s something to do. And also it means that some of them like it and if you go you enable it to carry on whereas it wouldn’t if everybody stopped going.
 
We have a quiz once a month. There again, for the last three months, there haven’t been sufficient to hold it. It only needs six and there haven’t been six coming. So it’s not worth the gentleman’s time in preparing the questions and answers for that, you know, so we make it we have to have six to carry on with that. But that hasn’t been for the last three weeks. We all turn up and then doesn’t happen three, three months rather.
 
Yesterday they had a coach went took some of them to Claxton-on-Sea. I think there were about thirteen went on that but I couldn’t because my back won’t let me sit on coaches.
 
And what else do you do? Do you read?
 
Not so much nowadays. Again, the, this last six months my brain power seems to have gone down an awful lot. I do some bits and pieces for here on the computer. I do the notices for here and things like that. I do theatre bookings. We’ve got a local theatre and one time quite a number of people used to go. This time there were only five of us going but I still manage to get to that with difficulty, with the help of the lady who goes with me. She’s very good. She usually carries my seat for me and again the dial a ride, we can book up a fortnight before for a theatre visit. So we book up on that and they collect you at the door and then they take to the theatre and then they bring you back again afterwards. The staff on that, the actual drivers, are absolutely phenomenal. They really put themselves out to help you and…
 
And when you go to the, to the theatre do you take your special…?
 
I take my special seat always, yes yes.
 
The theatre we go to has a walk down entrance to the front of the auditorium and we always have the front two or three rows of seats. Because there are a number of us who can’t manage steps very well and it’s so they’ve got no hand rails up the steps in this theatre. So it’s very much safer if we’re either in the front two rows which have no steps or the next row so you have a minimum of steps. So I always book for us in those rows because it’s as I say, I do the bookings [laughs] so I can organise it like that 
 
 
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Betty avoided dairy products for many years because it seemed to make her pain worse from her...

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But what confuses me I mean I’d always taken additional calcium and magnesium always. I had a spell at one time when oh, I had a bad dose of rheumatism, arthritis shall we say, not rheumatism about twenty five years ago. And I had scan x-rays then and they said I had osteoarthritis of the spine, the hips and the pelvis. I was having difficulty in walking without a stick in those days and at that time I heard of… came across the idea that it could be caused by milk and milk products. And I completely went off milk and milk products. I stopped altogether. But I supplemented myself with additional calcium and magnesium always.
 

Tablets.

 

Tablets, yes, always and a very good healthy diet otherwise we have very.
 
And for how long you stopped taking dairy products?
 
That must have been ten years at least.
 
Are you still on a dairy?
 
No, I gradually reintroduced them and I’ve been on them recently, more recently, but I’m on goat’s milk. I have goat’s milk rather than cow’s milk. I mean I know it was the, the milk because it used to be after I’d broken my left wrist at one point in a fall. Every time I had cups of tea with milk in, the pain would come back in my wrist so I knew that that was the cause of that. But I must admit since I was diagnosed with osteoporosis I haven’t dared to take milk out of my diet altogether. I’m severely tempted to do so. To take milk and cheese out to see whether in fact it does make any difference with the pain everywhere because it isn’t only the osteoporosis, it’s all my joints are stiffening up now.
 
And do you think it is because of the dairy products?
 
I don’t know. Who knows? And without any wanting to give you serious advice what, what do you do? You know. So say I haven’t got any in my wrist these days whereas I used to this wrist used to be really bad with arthritis when I went on to dairy products after I’d broken it. So I sort of think of that as an indication maybe it isn’t the dairy, you now, isn’t that that is causing anything else. 
 
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