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Chris - Interview 23

Age at interview: 52
Age at diagnosis: 45
Brief Outline: Diagnosed in 1999. She is taking Actonel and Calcichew D3 Forte. Initially she was taking Actonel 5 mg once daily but found it impractical, especially during working days. She now takes 35 mg once weekly. She still experiences back pain but not as severe as before diagnosis.
Background: Divorced, two teenage sons; recently completed an MA in Arts, lawyer by profession. Chris says that her diagnosis enabled her to reassess her personal and professional life.

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Chris was forty-five years old when diagnosed with osteoporosis. She has been suffering from backaches for many years but when the pain became unbearable she decided to have a DXA scan. She was very aware of osteoporosis because her mother had it very badly. Her mother got dowager’s hump that affected her lungs and consequently her breathing. She said that because of her age she wasn’t able to get a bone density scan under the NHS so she had to pay for it. The DXA scan revealed that she has osteoporosis of the spine but that her hips were unaffected. It also indicated that she has a slight curvature at the top of her spine.
 
Chris GP didn’t see the need to start her on medication so she went to see a consultant rheumatologist –privately - who prescribed Actonel and Calcichew D3 Forte. She wonders what happen to patients who can’t afford to pay for DXA scans or have a second medical opinion.
 
Initially she was taking Actonel 5 mg once daily but found it impractical, especially during working days. She now takes 35 mg once weekly. She still experiences back pain but not as severe as before diagnosis. She would like to find out about the new developments in drug therapy.
 
In 2007, Chris fractured her ankle and this episode has made her more aware of her condition. Whilst since diagnosis she attends a gym and pays careful attention to what she eats, her attitude has changed since her fracture. She is more conscious not to do things that might result in a broken bone and hence, prolong periods of immobility.  
 
Osteoporosis made Chris review her personal and professional life. She says that to be diagnosed with a serious chronic condition; any condition, forces you to reassess your life and what you want to do next. She described her marriage as unhappy and her husband as unsupportive. She separated six months after her diagnosis later to divorce. Professionally she has also changed directions. Before diagnosis she worked as a lawyer and taught law at a technical college but decided to go back to university and do arts. First she did a first degree and then went on to do an MA in Fine Arts.  
 
 

Chris hasn’t had a scan for a while because her nearest DXA scanner is quite a distance away and...

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I’ve had I think one or two. Now that’s a big issue in this area. I have been in contact with the MP, [name], in the past. Apparently at one point when I was being, being seen privately by the consultant, I should have been having one every two years. I’m now on the National Heath system and I haven’t been having one every two years. In fact they don’t think it’s necessary, as I understand. But apparently, they do have a bone density scanner and I’ve been to it once, and it’s in [city], which is quite a distance away, and apparently they only use it one morning a week. So in the whole big area that it covers, they can only scan eight people that one morning a week. I’m appalled. It’s all right if you can afford to do your own. But when you can’t, the provision isn’t there really. I waited a long time, have had a bone density scan, did wait for my turn. But I haven’t heard of anything since. And perhaps I ought to chase it up. I haven’t. I’ve had other things to deal with, like my ankle. But I did, as I say, get in touch with [MP]. He did take it on board but wanted more information. However, as you’re probably aware, [MP] had his own problems, it had national coverage, and it sort of went by the wayside. And also I lost impetus because I had this accident and I had to focus on me and getting myself better.
 

Chris decided to get a second opinion with a private consultant after her GP said there was...

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Well, from my own experience, and I can only speak for myself, first of all to be told that nothing can be done was not good enough. It really was just not good enough. And I was lucky in the sense that I could pay to go and see a consultant to clarify and get a second opinion. Perhaps I could have got a second opinion on the NHS, but they seemed to be totally inundated, didn’t seem to be coping that well. And also we need a far greater explanation about what the side effects are with regard to the drugs, what we should expect in the future. And just being even given relevant websites to look up to get a greater understanding of what the disease means and the effects on one’s life.
 
So those are your needs in terms of information and advice?
 
Yes, well, I think I was, I was very unfortunate in that I got told that nothing could be done because I was of a certain age. That’s unbelievable.
 
How old were you?
 
I was 45.
 
Okay.
 
Unbelievable, isn’t it? I mean that’s totally ignorant. I mean I don’t know where she trained or whether she was having a bad day or what.
 
 Well, I think I’d like, I’d have liked a lot more information about first of all whether my ankle was osteop-, affected by osteoporosis and what other parts of my body are affected. I also found out, I went one day to the doctor, and I’ve realised my fingers, just these two fingers, there’s, there’s some sort of bending and there’s a sort of lump on them on, on both sides, just beginning. And I went to the doctor’s and they said, “Oh, that’s osteoarthritis. That’s an element of your whole condition.” Why didn’t they tell me that this is going to happen? I mean why wasn’t I informed of the, what other things I could get as a result of the osteoporosis? Totally uninformed about so much. And maybe I have, should have been more proactive, but no one told me anything about what other things could happen to me as a result of this osteoporosis. I knew about fractures, but I didn’t know about anything else.
 
How did you feel about that?
 
I was pissed off, to put it bluntly. I was fed up about it. And it was a sort of a, “By the way” thing, you know. There was no sort of care really, I don’t think. You know, there was nothing. Just, “Oh, that’s by, by, you know, side effect. Goodbye”.
 

Chris who lives alone, found it hard to rely on others for support when she was used to being so...

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It does worry me, inevitably. I mean, you know, if you’ve got a problem walking, you know, it’s just the practical things that are really difficult. I mean I, I am a very proactive person. If I need something, I go and get it. But actually there comes a point in time when, if you’re physically unable, no matter how motivated you are, you do need other people’s help sometimes. Like my father, who’s 84, bless him, said, “I’ll come and stay with you, get the shopping for you.” I mean, you know, that’s kind, but, you know, what a position to be in really, you know. He wants to and it gives him purpose and I’ll, you know, that’s fine. But I’d rather not be in that position.
 
 
It was actually quite a horrible experience. Not only being abroad and being on my own and being carted back, but being stuck at home on my own for many months and being reliant on others. And being aware that, you know, there’s a lot of others out there that are not going, you know, I’ve got neighbours who just, I thought they’d help and never did. And that was disappointing actually.
 
And what about friends?
 
I have some friends and they did come and help. But they have their own lives, they can’t be around, you know, all the time. So, and my closest friend lives in [county]. So, you know, she came over the Easter period to help me, you know. But at my age, who wants that? You know, she’s my friend, I don’t want her, you know, I feel embarrassed by it. It’s not the sort of thing I’d want.
 
And what about your family? Do you have relatives …?
 
I have family, yes. I have, my brother every few months used to come down and do little jobs for me. And in fact he’s coming down next week to do a few things for me. But I’m a very independent person. I don’t like asking too much. And maybe that’s a fault in me, but actually that’s the way I am. And it’s given me a taste, interestingly enough, of what it’s going to be like when you’re very old and you don’t have the choice, if you get there, should you get there. It’s, it’s been a real eye-opener actually.
 
Can you tell me more about it?
 
Well, having been a lot on my own and not having a great deal of outside contact and being reliant on other people and not being able to get out, it’s just soul-destroying, it really is soul-destroying. Luckily for me I’m at my, I’m at this age and I do have things to look forward to. But if this accident happened at 75, 80, I don’t know whether I’d have had the motivation to do what I did for myself, because I would have been that much older.  
 
 

Chris decided to leave an unhappy marriage after she was diagnosed with osteoporosis.

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Personally when I found out about my osteoporosis it made me review my life. Because I had it quite badly in my spine, I had it quite badly in my spine. My hips were okay. But I was 45 and had had a very unhappy marriage. I met my ex-husband at 19, he was my first boyfriend, came from a Catholic background and had the attitude, you know, that my mother instilled in me, “Once you’ve made your bed, you lie in it.” But actually I’ve had a very unhappy marriage. And I’ve thought about my ex-husband’s reaction to it, and as usual there was no emotional support whatsoever. The only thing he did was to go to Tesco’s and buy me a little book on osteoporosis, when I said that I needed some sort of emotional support. I had to laugh, but it wasn’t funny really. Anyway I think it was the beginnings of me to start, started really valuing myself and my life. It had a really, that was the silver lining to the whole situation. And to cut a long story short within less than a year I’d asked my ex-husband to leave.
 
Have personal relationships in any way been affected by osteoporosis?
 
Yes, definitely. My marriage broke down. But then it was just an impetus really. My ex-husband’s reaction was a similar reaction I got generally for many years anyway. And it just so, was so much in my face that I couldn’t, you know, walk away from it. It was something I had to face and deal with.
 
There, there was no support, no emotional support whatsoever. And in fact when I asked whether he, I said, “I do need some support here” that he, he got rather horrible to me actually. And, because I was there for his needs. My needs were really, didn’t come into it really. And I had to see it for what it was. I mean that side of him was there in the marriage anyway. And it was just facing up to it really.
 
 
I think anything sort of traumatic in any sense, I mean you get told you’ve got this disease, it makes you, I think anything like that makes one review one’s life. But it was the consequence of my ex-husband’s behavior towards me as a result of that, that was a repeat pattern of behavior in our marriage, that made me realise that life, you only have so many years in life, you’ve got to make the most of it. And it made me value my life far more. And as a result of that I did all the things that I needed to do, that perhaps I knew that I should have done many years ago but didn’t. So it made me value myself to a far greater extent.
 

Chris eats more calcium-rich foods and avoids red meat.

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Tell me, have you made any changes to your diet since diagnosis?
 
Yes, I eat a lot more calcium-rich foods. I know what foods are good for me and for my osteoporosis. I eat a lot more yogurt, sesame seeds, figs that are growing out on the trees, you know, that sort of thing. I do, I’m aware of what I eat. I have a greater awareness.
 
 
What about drinking alcohol?
 
I don’t drink really very much. I mean an occasional glass of wine. But not really, no.
 
Are you a vegetarian?
 
I eat, yes, I’m more, I’m sort of semi-vegetarian. I don’t eat red meat. I’ll eat chicken and fish. Not, I really don’t eat red meat. I don’t like red meat.
 
And any supplements, vitamin supplements?

 
Occasionally I used to take vitamin supplements. But I think that I, you know, if you eat reasonably well, they’re not required.
 

Chris believes she needs to find the information she wants herself and not rely on medical...

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I have been thinking recently that I need to be more, a bit more proactive about it and find out whether there have been any developments and whether there’s any medication that is probably better for me actually. I know there have been some developments, but I’m not, I’ve not really researched it. And it really I feel is down to me. I don’t feel as though I can rely on the medical profession and my doctor to inform me of anything. It’s me that needs to sort it out.
 
I think I need to do more research regarding the long-term effects. As I said before, I didn’t realise osteoarthritis was something that would be affecting me as a result of the osteoporosis. I’m wondering what other things I should be expecting in the long term so I won’t be surprised in the future. I think that should be something that should be in-, you should be informed as a patient with osteoporosis by the medical profession.
 
Have you found any Internet sites helpful?
 
When I initially did my research on the Internet, I found that there were some Canadian sites and American sites from the US that had more information than in England about osteoporosis. And that’s what I did. I looked it up and read the information that was on those sites.
 

Chris’s ankle injury and operation has stopped her from working for a short while.

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How many hours can you work and the type of work you can do?
 
Yes, I’ll have to take that into consideration. But I’m really the sort of person that I think if I want to do something, I’m going to go all out and do it irrespective. But not to the extreme extent that I’ll damage my body. But I am not going to let it restrict me to that extent. I’ll do what I want to do. Obviously I can’t lift heavy things. I won’t be silly enough to do that. But there are a lot of jobs out there that don’t require that. And I’ll just take care of myself. But I will do, I will not let this hold me back. I certainly won’t let it hold me back.
 
Has there been any financial implication because of your condition?
 
Well, I think there is considerable I mean for the marriage. I had a very good lifestyle. You know, we lived in a huge house in the country, massive house, really, you know, had a different lifestyle completely. But I would have been working by now if I hadn’t had this bad ankle. I’ve been holding off because I knew that I would have another operation in September time to get this metalwork out. And I had personal things like my mother dying and being very ill this last, from December to March. And I suppose I’d worked quite hard actually in my art course and my MA. And having had the accident, that drained me considerably physically. And then my mother dying. And now I’m quite happy having these few months before I start working. But it has held me back. I the, the injury, I probably had been working by now.
 

When Chris was diagnosed with osteoporosis it was a wake-up call to change her life.

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Well, it, yes, it took me a little while actually. In the first six months, I mean it took me a few months for it to soak in really, absorb the reality of the fact that I had this disease and that it was sort of incurable really but perhaps could be arrested. But I’d had it quite badly and I’d left it for so long, or hadn’t left it, I was, you know, it’s a silent disease, you, you’re not aware of it. If you have backache, you have backache. You’re not, you know, it could be anything really. But I just thought, “Well, I have this life. I haven’t been happy. I’ve done all the, what I would, you know, all the things that other people wanted me to do and not really done what I really wanted to do. I have an unsupportive husband, who is very much interested in his own needs and not mine.” I was pro-, I was probably an object for his needs, and his support system for, you know, for him. But I had none myself. I had nothing much from him. So it didn’t, it wasn’t a big decision really, when I look back. Because I had nothing to lose. It was my life, I had this disease, and it made, it was the impetus, it was a big impetus to change my life. It made me realise that actually we only live for so long, and that I don’t want to have to look back on my life and say, “Oh, if only I did this. If only I did that.” That was a real positive effect it had on me. And I did. I got an art degree, I got my MA. I’m not sure at what point what I’ll be doing next. But it will be something I want to do. And I’m thinking about my needs and myself.
 
Prior to that I was very much the mother and the wife and the, although I had a job, my focus was on the family and feeding that family, and not really feeding myself properly. So it was a, it was a wake-up call, it was very much a wake-up call. And I think probably for a lot of people that have, that are not happy in their lives and are diagnosed with whatever disease and have the opportunity to rectify whatever is wrong in their lives, or is not making them happy, should I say, it’s one’s perspective, isn’t it. And that’s how I dealt with it.
 
I mean I’ve still got my bad backache, I’ve still got my ankle that’s sore, but actually I’m doing what I want. I’m restricted, I am restricted. And in fact I was doing my MA at the time I did, I badly injured my ankle. But rather than sit back and think, “Oh, poor me, I’m laid up now” I phoned the university up and said, “What help can you get me? I want to do my final show.” And I went over in the wheelchair. And I got help and I did this big installation and they, they, university kindly supplied me with a pair of hands. So that’s the way I am. And I think that it’s important to be that way. 
 

Chris is more careful about everything she does and she plans ahead.

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Have you changed your behavior or your attitude in any way following this fracture? Are you more careful?
 
Oh, yes, I am, I am a lot more careful. I look where I’m going. And the paths, you know, have bumps in them and all sorts of things, holes and the like. And I look down instead of across like I used to. I, you know, in fact when I had my fall, for several, well, I was laid up for several months. I should have had physiotherapy prior to when I did. I became an urgent case. I got overlooked. But I lost complete confidence. It sounds daft, but I lost complete confidence in walking, you know, and being careful and looking after myself. I’m a bit better now, I mean I’m a lot better now. But it’s taken me quite a while to regain that confidence.
 
And what about regarding lifting, carrying things now?
 
I’m careful. I mean I’ll, I’ll carry things. But if I see a thing’s too heavy and it needs carrying, I’ll wait until I have a visitor who’s able, to ask them to do it. That’s what I do. I can’t do it. You know, I’ve got to be careful. I’m, I’m more careful, I’m going to do some decorating soon. My father wants to help me. And, you know, I think twice about going up a ladder and that sort of thing, because the consequences of me falling are that much more than anyone who’s got non-osteoporotic bones. And, you know, you just have to be that much more careful.
 
What other things are you sort of paying more attention to now?
 
I’m definitely paying more attention to my footwear because of my ankle. I can never find shoes that are comfortable enough. Presumably that will get better as time goes on. Carrying and lifting things obviously.
 
Bending? What about bending?
 
Oh, bending, yes, I’m much more aware of the strain on my back and I sort of try and bend my knees. But my ankle, you know, I have to be careful because the strain on that. I’m just generally far more careful about everything I do. I think ahead more, you know. Normally I, you know, when I, even didn’t, even after I was being diagnosed with osteoporosis I didn’t think ahead too much. But having had this accident, I think ahead. I don’t want to go through that again.
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