Victoria Iris - Interview 30

Age at interview: 83

Age at diagnosis: 64

Brief Outline: Victoria Iris was diagnosed in 1989 and at that time the only treatment available was HRT. Over the years her treatment has changed; Didronel, daily Fosamax and weekly Fosamax. Currently she is on the 18 months Forsteo (teriparatide) treatment. Victoria Iris developed Kyphosis but she didn't become aware of it until it was evident.

Background: Retired deputy head of a large secondary school; widow, regularly attends exercise classes and a tea dance session every week. Victoria Iris has been an active volunteer of the National Osteoporosis Society for many years.

More about me...

Victoria Iris diagnosis came about when she was looking after her mother who had osteoporosis. Victoria Iris  was diagnosed in 1989 and at that time the only treatment available was HRT. Over the years her treatment has changed; Ditronel, daily Fosamax and weekly Fosamax. Currently she is on the 18 months Forsteo (teriparatide) treatment. She doesn’t have any problems administering the daily injections but finds that there is a lot of paperwork to do for patients on this treatment.

 

Victoria Iris says that osteoporosis has made her life much more difficult. She has less mobility and finds that her movements are less agile. She says that she used to be very energetic and mobile but now finds that she needs help with things like certain household tasks, when travelling in trains or planes and in reaching products in high shelves when shopping. In her experience she has found that people are kind, that everyone, including young people is more sensitive to the needs of the elderly

 

She says that not to be able to do things for yourself and having to pay others is expensive and consequently the condition does have a financial impact. She has hired the services of a window cleaner and a gardener. She manages the cleaning of the house by keeping two vacuum cleaners; one upstairs and one downstairs and a dust buster but knows that the time will come when she will need to hire a cleaning lady.

 

Victoria Iris is 4 foot 10 and says that because of her height as well as old age she feels particularly vulnerable in hazardous weather conditions such as strong winds. Also she tries to avoid going out in rainy weather due to fear of falling. In her experience hotel’s bathroom can be ‘lethal’ and someone with osteoporosis needs to be extra careful.

 

About 15 years ago Victoria Iris developed Kyphosis but she didn’t experience any discomfort or pain in the process and so, she became aware of it only after it was evident. She wears smart and comfortable clothes and feels the more confident for it. She has found one firm that has made or altered most of her clothes to fit well but it’s expensive. Victoria Iris also has her hair done regularly but says that visits to the hairdresser aren’t without its problems particularly when they shampoo her hair because she is not able to get right over to get a back wash and can’t cope with a forward one.

 

Despite limitations and practical difficulties Victoria Iris lives an active and independent life. She understood early on that it was up to her to cope and manage her condition. She attends a regular class based on an adapted version of ballet exercises and attends every Friday a tea dance session at her local civic hall. Her social activities also include dining out with her brother and sister-in-law and friends, church events, etc. Victoria Iris also travels by plane and ship on her own. Last year alone she went on two cruises. She flies to the Caribbean and then transfers to a cruise liner. She says that the ship’s crew is ‘brilliant’; helpful and thoughtful about her needs. In her experience she says that the most important thing is to plan ahead and make others aware of her condition and her need for assistance with such things as help with luggage throughout her journey and wheelchair service at airports.

 

Victoria Iris has also been an active volunteer and campaigner for the National Osteoporosis Society for over twenty years.

 

Victoria Iris strongly believes in exercise and she goes to weekly classes which she feels do her...

I do believe in exercise. I’ve always exercised. One of the subjects I qualified in was physical education, the other being history and, and I have always been interested in some kind of sport. Now at the moment I go to one exercise a week and it’s run by my local group with my sister-in-law and I taking the lead in it. I go to a tea dance on a Friday afternoon at our local civic hall and there we do line dancing, sequence dancing and ballroom. Until this last six weeks I have found that the floor is so slippy that I am frightened to do line dancing because there is a risk of me falling. And I have complained about it but of course, I won’t get it altered. But I am sorry about that.

 

But nevertheless I talked to my doctor last week and said, ‘Can I contemplate a second exercise class when we start back in September?’ And he said, ‘I must test your heart and blood pressure first’. Which he did and he said my heart was ok and my blood pressure was better than he expected so yes provided if I feel tired at all or feel anything I just sit down, I withdrawn. And on that consideration I aim to be doing two exercise classes in September.

 

What type of exercises do you do?

 

Now it, it’s really more a traditional going back a good many years to do with. It was designed by a ballet dancer originally, Margaret Morris. And our teacher is very experienced, getting on in years and she has adapted. We’ve had other teachers but she’s adapted her teaching and she contacts us, the society and with a view to making sure that people who’ve got osteoporosis can cope and that the exercises are suitable for them. And that means that we’ve got a tremendous amount of support. And I find they do me the world of good. I’ll admit that I feel as if I’ve worked when I come home after that but nevertheless they are, her exercises, the Margaret Morris movement exercises are better than I’ve ever had. And I’m in a position to judge really having taught physical education myself such a long time ago. But I do believe in exercise. I strongly believe in it and I know I’m not walking because I’ve got a disabled sticker but I would advocate it to anybody, exercise.

Victoria Iris has been involved with the NOS at a national and local level for many years. She...

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.

 

But I’ve also spoken to every conceivable kind of group of, from the society' nurses in London, I. and they’ve asked me to go so that the nurses could ask me the questions. And in a way I think that’s been very beneficial because. And I think it’s even more so at the moment. They need to know to be able to speak authoritatively themselves. When I ceased to be they felt they couldn’t keep me any longer, you see 6 years so. But then they found me another job and that was to be in charge of a group that meets about four times a year.

 

I mean I’m not too keen on August because all the societies like exercise and things finish. I’ve got little paperwork but once September starts there’s plenty to do. And in a way I’m able to cope with that and that is mentally good for me. It, it’s what you need, stimulation mentally and physically as you get older, never mind osteoporosis. But that I find I enjoy that. I feel I’m doing something worthwhile and we can get our teeth into things. I’ve got a meeting. We start meetings in September and then I’m kept quite busy.

 

So you like to be kept busy?

 

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

Assistance with travelling on public transport enables Victoria Iris to travel to meetings and to...

I find weather hazards very difficult. Now we’ve had a lot of wind in my part of the country this summer, an extraordinary amount of strong wind and I’ve found that quite hazardous, very difficult for you to appreciate but I’ve, because as I get older my balance isn’t good I do feel I’m at risk of being blown over. And I do have to be careful. And of course you’ve only got to have wet weather and, and at a time when the leaves are falling and that is treacherous. And of course we all know that I would find it difficult with snow and ice. So that it does make life much more complicated is the word I’m after.

 

I travel on ships and planes but always have to have assistance.  Wheelchair to and from but on board ship I can cope once I’m there. And I do travel on my own. I’ve been on two cruises this last year.

 

 I do need assistance as I mentioned on and off planes and even trains. I attend quite a lot of meetings in London and I’m escorted from the taxi, over the line to a waiting room and I always have to book. Often it’s two months in advance to get a good seat and it is really wonderful how they look after me. When I’m going to London the buggy wagon is awaiting for me when I get to Euston and sweeps me under the concourse to a taxi. And then I just get in the taxi or I’m put in the taxi. I go to my meeting and I come back and there its role reversal. No shops these days but nevertheless I’m very grateful that I can still do that.

 

I still am able to drive for which I know I’m very grateful and very fortunate. And I have a disabled sticker and I’ve had it for three years and I’m about three months through the next three years so I’ve got to keep fit and make sure that I make full use of that because if I didn’t drive I would find I wouldn’t be able to look after myself. I would not be independent because I can drive to get my shopping. I can drive to go to the hairdressers, to the doctors and I even am able to give my brother who can’t drive. He’s always had eye trouble and since he’s been 70 he’s not able to drive. He’s younger than me and so I still can give him a lift, he and his wife a lift which does me the world of good to think I can do something for somebody else particularly as it’s my brother.  

Victoria Iris plans her travel by air very carefully. She recommends holidaying on a cruise ship.

I have to plan it very carefully. Until last year I did an ordinary flight but as my, if I could have a seat on the aisle because I needed to get up every now and again to stretch my legs. And I managed that. But last year I thought that I would be extravagant and I paid to upgrade my flight. And it was worth every penny because it wasn’t just that. You see if you’re sitting on the end, aisle people are coming past you to go to the toilets and if you’re small they tend to lean over you and, and so it was worth every penny and I’ve done the same for my next two. I’ve only taken to cruising about the last nine years. Nothing I’ve done all my life. And it’s something that’s ideal for an osteoporotic. If you go to get the sun in the Caribbean and if you plan it.

 

Now I, on my last cruise which was Mediterranean, I’m now injecting myself daily with Forteo, that’s for 18 months and I have to take quite a. It’s quite bulky I think when you try to prune down everything that you’re going to take. And I have to take a separate bag for that. But it’s all it’s all well thought out. The moment I mentioned that to the travel agent I was told immediately oh no problems. And I was even told that for my next cruise a sharps box will be provided to put the needles in. Well, well I’ve had to take one this time so that all of that is helpful.

 

And I have a gentleman, taxi, who takes me to the airport. If it’s or Birmingham or Manchester it’s better but he has taken me to Heathrow. But I think I prefer to go to Birmingham or Manchester for obvious reasons. And he is very, very good. He will not leave me until they’ve supplied me with a wheelchair. And you see all of this is on my own and sometimes I have to say to him, ‘Now please go. I’m fine.’ He’s reluctant to leave me you see. But once they give me the wheelchair and put me in it I sit and wait until they look after my luggage and then somebody will take me up to Duty Free. Then it all, it all works very well indeed and I have no hesitation in saying if you’re an osteoporotic don’t be afraid to travel.

 

And what happens when you reach your destination with your luggage and everything?

 

Yes well when I book I book with them assistance both ends. And when I... I’ve learnt from experience when I get near the destination if we’re flying and we’re getting fairly near I’ll say to the, one of the stewards, ‘now look I am booked with a wheelchair to meet me but I know you’re always busy’ and I’ve found if I’m polite about it they’re, fall over themselves to help me. And, ‘Oh thank you we’ll ring ahead’ and it’s always worked that there’s been one there. Only once and that was very early on when I. I’ve learnt a lot since then to warn in advance you see. And that’s the same when I’m going on the train to London. The conductor when he comes to check the tickets I mention it to him then. And say, now I am booked and he’ll. Now they don’t say anything. They just say, ‘Leave it to me I’ll see they’re there’. They’re all really learning how to deal with people like me much more efficiently.

 

So you think their attitude has changed?

 

Oh yes, oh yes. They’re. I couldn’t fault anything. They are wonderful to me. In fact really if somebody was taking a film and listening to all that goes on they’d be surprised. And when I get there, not this year but last year I was met in the Caribbean by a taxi, taxi on my own to take me from the airport to the

Lack of pain and little discomfort meant that Victoria Iris didn't realise that she was losing...

Now appearance. If you are misshapen as I am. I’ve got the Kyphosis of the back, the hump back to put it in blunt words and may I say here and now I did not know that was coming. I didn’t experience any discomfort or pain which is very difficult to comprehend but it’s true. And it was only when I, after a little while with reaching up into I’ve got fitted wardrobe which I had done after I’d been looking after mother and came back here. I had my house restructured so I didn’t have to get on steps or stools. And it was only when I was reaching to something high in the fitted wardrobe that I realised I was having more difficulty getting it down. And so clothes and being quite a difficult thing.

 

What were your feelings when you realised that you were developing the Kyphosis? How did you feel about that?

 

I didn’t. Well I was feeling fine. I didn’t feel any difference it’s just that I suddenly knew that I, my shape had gone with no discomfort. It’s inconceivable really so that indicates how aware you’ve got to be.

Victoria Iris buys her clothes from one company and has them altered, which is expensive but...

Well. I suppose it’s got to be 15 years ago now. Yes. Yes. But the other thing is that because I’ve got this it’s very difficult to get clothes that you look, well that you feel alright in. You know you’re never going to look like a model but nevertheless if you’re comfortable you get more confidence. And I mean there is a certain firm that I, nearly everything I posses is made and supplied by them. And what I’ve got on today is but the thing is this, they have a great facility for altering and sometimes I’ve actually paid as much for an alteration to get. I once bought a skirt and a pair of trouser and like a 7/8 jacket and it cost me as much to have one of, to have those altered because they all needed something, arms or waist. And it cost me as much as buying a new single article. And I think people, they often say to me, ‘Oh you look nice.’ And I think to myself, yes but I, are you prepared to pay for the alteration. Because it is expensive but as far as I’m concerned there’s only one way.

Victoria Iris is expecting to get more discomfort as she gets older because her body is out of...

But you feel that sufferer somehow embodies better what you experience?
 
Well yes because you see. I’ve mentioned to you all the ways it affects me. Well I’m not suffering because of the pain. I get discomfort and I think I’ll get more as I get older talking to my doctor last week because my body is. My, my body really is out of alignment is the word, I would thought, as I’ve got the Kyphosis so that my ribs and everything will be affecting the other parts, organs in my body. And I know that it did with mother. So that I’m prepared for that. But I still feel that sufferer is a better application as regards to me [laugh]. I’m really quite strong. I mean although they were on about patients quite a few years ago now I’ve not altered. I, I still stick to sufferer. I’m frightened to say it out loud but that’s how I feel.
 
What has the doctor told you about the Kyphosis and how it will affect you?
 
No well, I. He hasn’t told me anything but I, see I’m. I’ve been to a lot of conferences. Well I’ve been abroad quite a lot for pharmaceutical companies. They’ve sent me abroad twice, twice in Vienna, twice in Rome, one in Berlin and there’s some, one in Jersey and as well as two or three in London. And so I’ve learnt a lot from listening what’s going on to others as well. And I mean I knew from my own mother. You see she lost. If you lose the alignment it’s going to affect your organs because they’re going to be misplaced or disjointed, out of alignment. And I must say this though, one thing I’d said I’d been abroad for pharmaceutical companies but one thing and I think I might have mentioned it, that the worst patients I’ve ever seen for all kind of deformity have been men.

It's not the end of the world, follow the advice of your doctors and it can be prevented from...

Well I’ve met one or two like that and they’re usually very depressed, very down in the dumps and I, I mean, I say to them, ‘Well I’ve got it. I’ve had it now all these years and I’m coping.’ But that’s not the way you can deal with it and that.

 

I feel you’ve got to say, ‘Well we all get something in life and when you look at it this is not to be compared with a lot of things.’ Comparisons are odious but when you think I’m still able to get about. I’m still able to go on holiday abroad, fly, on a ship. I feel that you’ve just got to think it’s not the end of the world. You’re glad that you know you’ve been diagnosed when you have because if you hadn’t been diagnosed now you could have got worse and you can be starting treatment. You can’t be cured but you’ll probably be prevented from getting worse. And, and I feel that’s the thing you’ve got to bear in mind. I know it’s terrible when people are diagnosed. I’m well aware of that but the thing is it’s not the end of the world it’s the beginning of a new phase of your life and you’ve got to make up your mind you’re going to do your best to conquer it.

 

It may not be 100% as normal but they’ve still got a purpose for living and also they can do. I actually tell people, get involved with the National Society or get involved with something where you can be helping other people. And I will honestly say for what I’ve done to help other people has really helped me. I do believe that. I’ve got it written down somewhere here that if you. It is a blow and doctors have to soften the blow but the thing is they have to be kindly and say, ‘Well we can’t cure you but we’ll try to prevent you getting a lot worse’. And if you can form and exercise when you should and eat the right kind of food and don’t have smoking and excessive drinking and lead what I would call a normal, calculated, careful lifestyle there’s plenty to live for. 

Victoria Iris wants to remain independent but she needs to employ paid help for some household...

My household work. Have I mentioned that I have three cleaners, yes' one downstairs, one upstairs and one for the stairs. I have a window cleaner who occasionally, it’s father and daughter, and occasionally I get the daughter to come in and do downstairs as well. I’ve got it in mind the next time she comes to do upstairs because although reaching for the, up to the windows is good, the stretching upwards. I am finding it increasingly difficult. In fact I just can’t cope. And so I will ask her to come and they’ll do it with pleasure.

 

I must say that I am quite careful. I try not to make any more mess and living on my own I make the minimum. I have tried to keep up-to-date as well. I wouldn’t like to think that I couldn’t do my own housework but the day will come I know.

 

But nevertheless as long as I can do my own shopping, oh boy which is the same with everything. I’m independent by nature as well. I cope with things and sometimes I have difficulty. I certainly have difficulty, oh yes before you go I’ll ask you something. I certainly have difficulty with undoing screw tops and things like that and I won’t trouble my brother. His wife’s far from well, not nearly as good as me and ten years younger and he’s always had eye trouble. Can’t drive now so he’s walking everywhere. I never trouble him but one day I was desperate. I took a disinfectant, toilet disinfectant. I said I can’t do this and of course he did it in a second but I don’t trouble him. That’s about the only thing I’ve asked him to do.

 

I find my balance isn’t as good as it was. I mean when I’m waiting by the microwave. The exercise lady said, stand on the one foot and put the other behind and don’t stand too near the cooker in case you fall and try it. So all along the line I am trying to you know. Now I played the piano but I haven’t touched it this year. I had it tuned before Christmas but my dexterity is not as good as it was. I mean obviously I’m not going to get any better, all I’m hoping is I won’t get much worse.

 

I do go in the garden and although I have a gardener I can prune. Now the yellow bush in the front I did a bit in the week but I can see it wants chopping a lot more. I wanted to make sure the hydrangeas you could see. And but that’s good for me so I get out whenever I can. I do bend a bit but not too much because I’m better if I’m stretching than if I’m bending. I things like turning my bed. Now I have a single bed because it’s easy for me, even the bedclothes are you see but I keep thinking to myself I must ask somebody to come and help me to turn my bed, but it’s things like that. 

Victoria Iris talks about her difficulties when going to the hairdresser and with dressing.

It has made my life much more difficult. It has a major affect on anybody’s life. I now have to have. Well my mobility is less and I used to be very energetic and mobile and I, movements are much slower. I need a gardener, a window cleaner and alteration of clothes due to the lack of shape. Visits to the hairdresser are quite hazardous because having a back wash. I am not able to get right over and I can’t cope with a forward one. We’re at the point now where it, so long as my feet are elevated and I’m tipped back I can cope. But my own normal hairdresser here at home has got the kind of seat that if I’m sitting on a bag of cotton wool or lots of towels I can tip my head back. But it’s still quite a difficult job for the girl who is shampooing me.

 

Ooh now you’ve hit the nail on the head. I have to wear these elasticated pop socks. Now obviously I found going anywhere elegant I will wear tights ontop. I said to my doctor this last week have I still to wear them. I once had a deep vein thrombosis and immediately I was on ditrodol, immediately I was off it. And he said, yes because I’d had a deep vein thrombosis I would always need to wear them. It isn’t that I mind wearing them I said but I have to tell you I do my exercises every morning trying to get these on. I try sitting on the bath. I try sitting on the bed. I try sitting on the stool. I’ve even tried bringing my, cream that I put on my face and do it down here. I said but it really is an exercise. And he said, well that’s good for you, [laugh] which I know. Yes. About 6 weeks ago I couldn’t bend down to fasten. I’m supposed to wear trainers you see to stop, to cushion the effect of jarring. I couldn’t bend down to fasten the trainers, to tie them. Sit on the settee but the last fortnight or three weeks I managed to stand up and bend down and tie them. So I’m going oh, oh improvement. Great satisfaction.