Osteoporosis

I’d been to see my GP. This was just after I was diagnosed. And he did tell me that, they must have had information, that the [city] group were holding a big launch at, in the [city] city centre. So my husband took me down in the wheelchair. And listened to various speakers and decided then to join the Osteoporosis Society. Got very involved. And after a couple of years I was asked if I’d be chairman. Which I did up to three years ago, two years ago, when I was very ill again with the rheumatoid arthritis, couldn’t get about or anything. And my family said, “I think you ought to pack it in, Mum, because it’s too much for you and when you’re ill you can’t cope, you can’t do it.” So I did resign, but still kept being a member of the group.

 

 

To join? Company. Get me out of the house. Gives me a lot of support. We can talk, all talk about all our different problems. The helpline is there at the end of the telephone, who are absolutely brilliant, they really are. Any problems, you can just give them a ring, any sort of problems. But you can talk to each other about all your different problems. And, as I say, it gets me out of the house. Because I can’t, with the rheumatoid I can’t walk to the top of the street. I mean there’s a shop just round the corner. I can’t even walk round to the shop because of the joints. So I spend all day here.  

Well, we meet once a month, the second Thursday each month and we try to have, well, we try to have speakers that are to do with osteoporosis. We try to have a doctor, one of the osteoporosis nurses, a physiotherapist and hopefully a nutritionist is supposed to be there. It doesn’t always work out. We have got, we have several patrons. We have a political patron. We have a physiotherapist, that was the one that started off the exercise as a patron. We have a Glasgow writer as a patron. And we also have a, another clinician as patron. So we can always go to them and say, “Will you please come and give us a talk?” And people come along and say to us, “Oh, I thought you were talking about osteoporosis.

 

And this is where I come out with this thing again. “But we’re not here to dwell on the fact we have osteoporosis. We’ll talk to you about it. We’ll give you our support. We’ll tell you what we have found.” Because we’ve all been at the stage of being, feeling isolated, feeling, “What on earth has happened to me?” But I think part of the thing is that they describe it as being crumbling bones. And I think the fear of that is you could look at one of these characters in a cartoon where someone raps you over the hand walks away with you in the end because your bones have crumbled into the bottom of your body. And I just say, “Well, that’s not really what it means. It means ‘do something about it’.” Although I must admit it isn’t always possible. People have got a lot of things, and they have osteoporosis come along with other things involved that you think, “Well, okay, you need support, so what can we..?” And part of it is the fact that we can’t, we don’t give medical advice, we’re not medically qualified. But what we can do is say, “Well, if you speak to Dr so-and-so or...” Well, we’re very fortunate, the doctors are very very helpful with us, very helpful and very willing to come and talk to us. And they, I think probably because we are very much involved with the health board as well and we’ve got the support of the health board. And they come along, the nurses are great, they come along and talk to us about, they tell us about different sort of things, all different aspect of things. We’ve had an occupational therapist along to talk to us. Which was good, because it means that we know. It’s especially good if we’ve got a newcomer at the group that doesn’t know anything about it. Most of us are old hands at the group, “I’ve heard this story before.” But it’s good to refresh our memories about things. And it’s especially good if a newcomer comes along that’s totally, “I’ve got osteoporosis. What am I going to do?”

 

And they find out, “Well, you can sit and enjoy our company. That’s one of the things you can do.” And, well, we try to have other things like, we have, because we live in this city, we try to have something which is related to the city. Because somebody once asked me, when I was chair of the group, “Why are you having this..?” I can’t remember what the thing was. And I said, “Well, it’s because we are in the city and its part of the history of the city and it’s good to find out about it as well.”

 

Oh yes. I mean our the support group that we have for the last two years we’ve held five meetings in and around [city]. This year we haven’t because we’ve had problems with the various venues. Next year we will be holding again five meetings, please God.

 

But yes, talking to the, the ladies and the gentlemen who attend the meetings, the ladies who attend chat to other ladies and discover that they’re not alone with their problems, you know. Other, other patients other ladies have the same problems and together they can work out a solution and are happy to speak to somebody else because they realise they’re not alone. And the, the group itself its worth it’s worth it’s worth all the effort we put into organising the meetings for that reason alone.

 

I was first diagnosed in the July. Yeah, I knew there was I knew about the osteoporosis society because I used to have the journals as a practice nurse. Then when I had this diagnosis I rang Camerton the Osteoporosis Society headquarters, and asked was there a support group in or around [city]. And I was told, yes there was one in [city] which was going through the doldrums but was hoping to regenerate itself and there was one in the [district] area. Well, I latched onto the [city] one because I knew exactly where it was meeting. That was the only thing I knew about it at that time. An introduction was made, I presented myself at the door of this delightful lady who hosts the committee meetings and they haven’t let me go since [laughs]. You know, and I’m a contact person, it’s taken over my retirement almost and it’s worth it because so many people are being helped.

 

 

Yes, too active according to my husband but then I quote him his work with the model engineering club in [city] you know, touché. Yes, I am an active member and I would like to continue being an active member because I feel that there’s there are a lot of ladies out there who haven’t yet been diagnosed. And I would like to think, this is not meant to sound big headed, oh God please don’t let this sound conceited or anything, but the [city] group we can do a lot more for a lot of ladies who haven’t yet been diagnosed. You know, and I think we need to keep ourselves active for that reason.

 

But had I realised how involved I was going to become [laughs] maybe I, [laughs] maybe I wouldn’t have put my foot over the committee room door. But things have certainly taken off in my retirement.

We started a group in [city]. At the time I was looking after my mother there was a note in the local paper saying there’d be a meeting at one of the local hotels. And my brother saw it in the paper. He came armed with the newspaper and by this time he had retired and he saw it, brought the newspaper to me and said, ‘You’re going to that meeting’, [laugh]. And I said, ‘Am I?’ He said, ‘Yes’. I’ll come and look after mother and you can go with [name], that’s his wife. So the two of us went to the meeting and from that we started a group in [city]. So I have been connected with that throughout. At one stage when the chairman opted out for a bit I took over with a view to it not being permanent because I’d got enough to do. I’m always being supportive and I’m always on the committee.

 

Then I went to a meeting, a national meeting to do with osteoporosis and I was sitting there and the chairman, like the chief executive, came to me afterwards and she said, ‘Can I see you?’ And I said, ‘Well yes’. She said, ‘Are you in a hurry?’ I said , ‘No I’m fine.’ So I think this was London was either London or York. Anyway she said, ‘I’d like to get you more involved in our society and the next thing I knew I was the first lay person on the council of management and trustees.

 

 

Oh yes. Oh yes, yes. I don’t get fed up with life and I don’t get depressed but I, I am, always have been, I’ve always been better if I was motivated and got plenty to do at whatever capacity. And I think that I am better for it. Well I wouldn’t be here talking to you if I wasn’t.

 

I feel very much that I’ve learnt a lot but I’ve learnt a lot through experience and if only we could make what I call the next generation and the one after that. It’s. I mean if I’d got more time I’d be doing work in schools. Then I’ve got as much as I can do but it is two generations away we should be working on. And, and I mean I’ve seen a girl who, mother couldn’t hug her because her bones were so fragile and she’s confined to a wheelchair. Now that’s. What it is you don’t want to depress people but if they are prepared, they, you can’t cure what I’ve got but you can prevent it getting any worse. And I mean a lot of people manage to impede the onslaught of it by being diagnosed early. And that’s something that I’m, I wish we could make pe

You see I have not given the National Osteoporosis Society a chance, to even see if other younger women are turning up. But then, if the women at the hospital says, “Don’t go. It’s full of old ladies.” Then you are not going to are you?

 

 

No, no, because I was put off. I was put off in that it was not relevant to me. When I went to [name], who was the dietician, at [hospital] and she had her class, there was some, you know, there was some people there, that some were osteopenic and some were osteoporotic. And I went with my daughter and that, and you know, that was okay. They weren’t elderly. I don’t know why, I can’t see in my mind what I would consider elderly. I think….

 

There is no time to waste. You don’t expect to get hit with sort of things like osteoporosis and this that and the other. And some people don’t expect to get hit by death at 60. And I honestly, I honestly believe that that is what your life is about. It is about making the most of it, and doing it. And that is it. So you know, I am in denial about this. This is for when I am elderly and at the moment I am not elderly. Because I have got this problem with being elderly.

There are some people who regard osteoporosis as associated with growing old, and looking like an old lady with a bent back, and one of the things that is most difficult is to involve those people who simply do not want to acknowledge the fact that they may have osteoporosis or they may be at risk of it. I think all of us in groups have come across the person who you only have to look at and you know that they have osteoporosis and you very tactfully put this to them and the response you get is, I don’t want to know, I don’t want to admit that I’m getting old. And people sometimes wonder why our membership figure at about 23, 24,000 out of a population where we know that one in two women over fifty is at risk of a fracture why are not more of these people members of the National Osteoporosis Society? And I think this could be part of the answer. That we must find a way of getting through to these people that they must acknowledge the fact that osteoporosis is there, that they have it, or they are at risk of it, and that something can be done and that they are not going to end up looking like their grandmother who was bent double at 85. That medical knowledge is now so much greater and that osteoporosis is something that yes, you have it, but it can be treated. I am not in a wheelchair at 72, but I was told that without treatment I would be. And we must get through to people that it is not something that just old ladies suffer from and that if you have it, that’s it, nothing can be done, and you are going to end up looking like a question mark with a bent back.