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Robert had spinal surgery which left him disabled and in pain. No-one considered that he might have osteoporosis and he did not have a DXA scan.
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When he saw the extent of the damage to my spine he thought perhaps, you know, that the, the. He said my spine was literally rocking and you know, needed some ‘bolting up’. Was his words, you know, needed securing immediately.
So I was admitted into hospital. And during the consultation myself and my wife were there and he said, the surgeon explained the operation. He said’ I’m going to borrow a rib’. ‘And I’m going to’, you know, ‘I’m going to collapse your lung and I’m going to do a’. You know, and it sounded like a walk in the park. It didn’t sound like a serious operation to me but it’s something called a vertebrectomy and a thorocotomy, about a six and a half hour operation.
He’s a consultant spinal surgeon, an orthopaedic spinal surgeon. And he’s quite eminent in his role. He looked at the scans and immediately looked at a way of constructing support and in removing the damaged bone. I think there was 25% of my vertebrae left. So he wanted to take that away and then put this cage in. Unfortunately what he succeeded in doing is bolting it to osteoporotic bone above and an osteoporotic bone below so he. Subsequently what’s happened sort of four years down the line is that it. Basically they, my bones have now the cage has collapsed into the bones. So basically all that work is. That’s what causes me so much pain. Is that the cage is now sort of sunk into these osteoporotic bones because the bones were hollow to start with they couldn’t support the cage. But I’ve been told that it’s too risky to undo that work now. So it’s something I’m left with.
He didn’t mention osteoporosis and what’s quite ironic is that two miles up the road from this particular hospital there’s a density scanner, a DXA scanner. And had I gone one route I’m sure I wouldn’t have had the operation. Who knows. But it was quite, quite amazing really that you know I was in the course of the few months after the... I didn’t see my GP that often but I did see an orthopaedic surgeon and a spinal orthopaedic surgeon. And nobody thought about osteoporosis which I think is quite scary really. You know it’s, I think given my symptoms and yes it’s similar to multiple myeloma but you know I think osteoporosis should have been a factor. And given that I was talking to bone specialists I would have thought that would have come into the equation. And had it done earlier I’m sure that. I’m convinced probably I would never have had the operation. Who knows, I’m not a medical person. |
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Robert believes that there is still a lot of ignorance amongst (non-specialist) health professionals about osteoporosis.
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I feel there was a point, there was a time when part of my problem about being depressed was, was trying to find an answer and I felt robbed. I felt as if I, you know, I should have the answer and somebody should have explained to me why I had this terrible operation. And there was a time when I felt, I almost felt like I wanted to claim medically and say, you know, ‘I’ve been robbed and I, you know, this has been a misdiagnosis and everything else’. And I realised how complicated those issues are. But one of the things that was identified was I was clinging to something. I wanted the surgeon to tell me why he operated and to tell me why he didn’t look at osteoporosis first of all. And I was told, you know, literally to let go of that because it was, I think, a burning desire that wasn’t healthy. And I can appreciate that but, but I feel quite, quite amazed really I think is the word. I think it’s gone past anger now. I think I was angry at one stage and really the anger wasn’t healthy. But you know, in a sense I felt angry because, because somebody should have known this was osteoporosis and it could have avoided so much more.
I find the ignorance with GPs even orthopaedic surgeons if you like, the ignorance of osteoporosis I’d like to think it’s not that bad now but it’s still out there. You know, it’s amazing the lack of knowledge. You know my GP asks me what’s going on, what the news is on osteoporosis which is quite scary really but I understand they are general practitioners but, you know, it’s... There’s a lot of, there’s a lot of ignorance out there [laugh]. |
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Robert feels frustrated that he can’t see any strong reason as to why he developed osteoporosis.
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I’ve always been an active sports person. I used to play rugby and football. And I can remember breaking like my wrist playing football and my fingers but nothing that would say that, you know, that to say, to suggest that I had osteoporosis. And actually I, you know, I’d quite an active lifestyle but the only thing I can think of is, is that I became. In my job I was a sales director so I actually became sitting either behind the steering wheel of a car or actually behind a desk. So I’d very, very little exercise, probably ten years before it happened. And really I’m one of seven children and we’ve all been, you know, I was the biggest out of the seven children. I’m the sort of largest. I’ve always have been the fittest and probably the strongest. So when this happened it was twice as much of a shock really to be honest. So I had no sort of prior hint or prior inkling that this would ever happen to me because it came as quite a shock to find out I had osteoporosis.
Do you have any ideas about what caused this osteoporosis?
I was actually tested for testosterone levels in the beginning. I went through all the normal tests. I used to smoke but I wouldn’t consider myself a heavy smoker. I was never, certainly never been a heavy drinker, just a social drinker if anything. So I’m really at a loss and but apparently 50% of males who are osteoporotic, who have osteoporosis are actually what they call idiopathic. But I find, you know, there’s no real cause and I find that the most frustrating thing really. Is not knowing why it happened to me. You know I did, if I find there’s a reason, that you know somebody could say, ‘Well it was because you did this or because of that’. I think I would feel a little bit better. But not knowing why or how it happened is quite frustrating really as a patient.
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Robert learnt that some of the pain he was experiencing was the result of bad posture and being on constant guard which was causing stiffness in his neck.
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And then she then sent me to a, the only, the first time ever that she actually said, ‘I think you’d benefit from seeing a physiotherapist at that hospital. And I, this was more to do with pain and how I, my posture. A lot of my pain was through the posture because I wasn’t sitting correctly and I wasn’t, wasn’t moving my neck around and I was tending. So I, I tend to suffer with a lot of bad neck pain and stiff neck but it’s because you’re constantly holding your head and you’re constantly, you know, so you’re, you’re doing this all the time. You’re not aware of it but you’re on guard all day. And your on guard like I’ve always got this pillow, I’ve always got this cushion here guarding my ribs so that I, you know, nobody’s going to hurt my ribs. I sleep with a pillow like that in the night. I’ve got the quilt there, you know, I’m, you know, I’ve got to have this guard. So you’re doing this, so your muscles are on alert so that causes stress. That causes pain because your muscles tense and that causes like I get neck pain because my muscles in my neck tighten and I get stiff. So a lot of the pain is avoidable if you know the right exercises or the right. If you know to get up and move around every now and again is not just sit in one position all the time and you’d be amazed at you know, that just by getting up and stretching your legs just how much difference it makes to your, you know, to the. And not sitting in one position all day because I ache if I sit in one position all night or all day, you know. |
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Robert said that his pain is a useless one because it is not telling him anything new about his condition.
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The pain I suffer now is a useless pain because it’s not telling me anything I don’t already know. It’s not, it’s not like I’ve just gashed my leg and my brain needs to know that I’ve gashed my leg and get some help. This pain I’m having now is basically it’s not telling me anything I don’t already know. So you have to define a useless pain and a useful pain. Basically the pain I have is a useless pain [laugh].
Can you describe for me the type of pain you have?
It’s, there are... I seem to suffer with probably two types, two main types of pain. The rib pain is a burning pain almost like a shingles. It’s that’s, that’s like. It almost feels like my skin is burning and I get that at different points around my rib cage. And it’s interesting I can touch certain points of my rib cage and get like electric shocks and it’s. I can, my body down my left hand side is numb where the intercostals nerves have been damaged. But then my ribs if I touch the actual rib bones it’s like I’m touching fractures. It’s like if you’ve got a broken bone. It’s a really acute, sharp pain.
And then my back pain is a [ha] totally different pain again. I have a pain in the middle of my back which is an ache, a dull ache. And it’s difficult to describe it but I used to. My hobby is cooking and I can’t stand and peel a vegetable. Just that motion of doing that for a couple of minutes will cause an immense pain right around the centre of my chest. And that, and that all culminates from where the actual site of the operation or where the actual bone is damaged or has collapsed and gone. From that point, that’s where the point of pain is. That’s where the, that’s a dull ache which, which never goes away really. It’s there. If I think about it now it’s there. If I’m. That’s why diversion therapy is really good. It’s trying to find something to take your mind off it. And, and you know when I’m, when I’m working for the NOS and doing my talks I haven’t got time to think about my pain so it’s a relief from the pain.
But the best thing I do is when we go on holiday is if we go into, like if we’re on the boat and I put a life jacket on it may be 200 metres of water but I just with the life jacket when I can totally have no weight on my body whatsoever and that is unbelievable. That’s when all the. It’s just like it’s. All the pain goes out my body and that’s the only time I feel totally relaxed and I’m not using any part of my body and that feels fantastic.
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Although morphine patches give more continuous pain relief they only take the edge off Robert’s pain.
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I mean in the beginning the pain management. After the operation within a couple of months the pain was unbearable. I was having nerve-block injections. That was the first thing to try and stop the nerves from literally jangling through pain. So that would work for about a couple of hours at most. And then you realise that nothing was controlling the pain. So I went from all sorts of different pain reliefs from, I don’t know, names like Tramadols and all the different ones. It seemed to be going up the levels like Oxycondin. And the pain treatments I was given were getting stronger and stronger. But what that was doing was making me more and more tired. So you, you have to find the level of me not feeling so tired but having some sort of pain relief. And it went on and on and on. And I went from the Oxycondin onto the actual morphine patches which gave me a more even level of pain relief if you like. What I used to find with the Oxycondin was it was peaks and troughs where I’d be, one minute I’d be sort of completely out of pain, next minute I’d be back to handling pain again, really bad pain. So we had to find a pain relief that would sort of give me constant pain relief. And this was where the, sorry the patches came in. I take Gavapenden for my nerve pain.
But when I talk about pain relief my GP because I’ve got, I go to a practise for GPs. Every now and again one GP will pick up about the amount of pain relief I’m on and question it. And so you know, and I think they are, probably concerned you know because I have gradually increased and changed. I used to be on Oxycondin which were good in the beginning but they started to wear off. I noticed that the pain relief started to wear off. And I think it’s trying to find that balance of almost like palliative care where you’re drugged, you know, I could be drugged up to the eyeballs but not able to function. But I know these patches now they don’t give as much relief as they used to. So you know you get to a point where it just takes the edge off the pain and this nagging pain is always there you know. It’s different to a sharp pain where you, where you have a pain where you move something catches you. This is just a nagging pain that’s there all the time. It’s a funny, it’s like having toothache or you know, but it’s all over your body. |
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Robert talks about what he learned at the pain management programme and the impact it has had on his life.
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But all those pain reliefs there comes a point where they don’t, they don’t do anything. After a while you, your body fights it. So your body sort of, you know, well it’s a useless pain. It’s not a useful pain. So I went to a pain management clinic. And it, unfortunately there’s a massive waiting list to get to see these people. And what. When I went in my first interview with them and they said, ‘What do you miss most about your life’. And I to say my job, I miss my job the most and I just burst into tears. And I was so depressed I didn’t realise but I was clinically depressed because I, by that time I’d probably gone through probably two and a half years of constant pain.
And you know, I haven’t slept a full night’s sleep probably since June 2002. It sounds dramatic but it’s true. You know I don’t. You sleep for two hours at a time and then you wake up and then you sort of move around a bit, you shuffle. So you’re constantly tired and that’s the biggest thing, is the fatigue, the pain. You’re fatigued all the time that you ‘re constantly tired and under pressure.
I get stressed at the very little, the slightest thing that knocked my lifestyle out of balance would upset me greatly. So I went to a chronic pain management clinic and was given advice of how to a) manage the pain. Manage my lifestyle. Manage my image of the pain if you like. Because at the end of the day sort of like an image and reality you can change your image to something but you can’t change reality. So you have to sort of learn to deal with it yourself. And it’s almost like saying yes to something. Rather than trying to fight things and getting ill through fighting them you just say yes to it and go with the flow. And just try and be a little more relaxed.
They taught me relaxation techniques to tense every part of my body in sequence and then relax and release them. And I found that really good and it probably takes me about twenty minutes to go through the routine but then it sort of stretches my bones out to actually let me have a nap and have a sleep and have a catch up, recharge my batteries. So I taught myself through the pain clinic is to, is not to be, get to burn out stage where I work, go like a fool and then be worn out. Now I do little bits and have a rest, a little bit and a rest and just learning to manage my life and then it manages my pain as well. And also it’s taught me like sleeping methods. You know I’ve learnt how to sort of. If you can’t lay. I can’t lie down to go to sleep really. I have to sleep sort of like sitting up and reclining because as soon as I lay down it opens all my fractures up so it causes pain I think. |
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Robert’s volunteer work with the NOS aims to raise awareness of osteoporosis in men.
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I think what I’m trying to do is to. If somebody else finds themselves in my position it’s basically that they’ll have some better knowledge. I think when I was diagnosed with osteoporosis there was nothing really that, really for men there was hardly any literature to start with. And certainly there was no sort of other groups of men you could actually talk to. I’d like to think that we’ve come on a little bit from there now. And I think we have better diagnosis so there’s more men actually coming out of the woodwork with osteoporosis through better diagnosis.
And I continually. I have one of the things I do as well is counsel other suffers. So men will ring me and I, you know, I spoke to a gentleman yesterday just been diagnosed with osteoporosis. He’s depressed. He’s beside himself. He’s lost his job. And we’ve just talked it through. And everything that, what happened to me or how I felt seems to be exactly the same. It’s we have so many different things in common like depression, how you actually feel and you know, it is the same for most men. It, the conditions and symptoms are identical. So that’s what I’ve been doing for the last sort of two years.
At one time I used to set myself like a financial target. In 2007 I said I’d raise £10,000 and really I learnt very quickly it was more an awareness target. The financial side of it it’s irrelevant almost. Awareness is. You can’t put a price on the awareness. If you speak to 1,000 people and they tell 1,000 people then it, you know that’s what we need to be doing. Everybody needs to be aware of osteoporosis. It’s getting, you know, hopefully we’re winning but when you think there’s only one. There’s only the NOS really isn’t it. There’s nobody else you know. I mean it’s brilliant you can have a website like this. You know it’s got to help. It’s got to help the situation really. Fingers crossed we’ll get there. |
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Robert’s volunteer work with the NOS has been a ‘lifeline.’
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Really what I do now is, isn’t dissimilar to what I used to do as a job. I used to talk to groups of people. I used to give presentation to, you know, 20, 30, 50 people whatever or it could be a couple of hundred on a sales conference or. So I was used to talking to groups of people. I was computer literate so all those skills came in useful for the NOS. It sort of. And I think I’m a bit of a raconteur. I think I’m going to tell my story quite well so it goes down. It’s a dramatic story anyway but I think it helps that it, you know, it’s. I find it quite easy to do that. And I. It’s almost like performing on a stage [laugh]. I quite enjoy going up and doing it, like I get a buzz out of it. Where some people I think it’s the third most stressful thing for people to do is talk in front of an audience. I find it the least stressful thing. You know, it’s amazing but then I couldn’t do some of the things that other people can do, you know. But, so like, that was important.
The NOS was a lifeline in that respect. It offered me an excuse to do something and it needed [wife]’s 100% support really because it’s voluntary. So it’s you’re not doing it for money see. And it takes a lot of your time. But [wife] realises how much it means to me so she 100% supportive of it. So she never moans when I’m away or I’m going to do something for the NOS. And she’s quite, you know, quite happy about that because I think she realises the importance it is to my life. And almost I regained my purpose in life really. It’s given me another focus really and I’ve got my focus back now. I’ve got this sort of target to do something for the NOS is to try and achieve something and it’s brilliant. It’s exciting and it’s you know. And I’m involved in some of the decision making up there. A lot of it is nothing to do with me but they do involve me in some things. But it’s nice to dip in and dip out. And then when I don’t feel well and I feel tired or I might do one thing a week and then that one thing is something to look forward to. It’s in my diary but then if I don’t feel well I can either cancel it or it can be postponed or you know I do it and then I have the following day to get over it. So everybody wins. You know it’s a good one. |
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Robert describes his doctors different attitudes before and after he was diagnosed with osteoporosis.
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The consultant, the metabolic bone specialist I see is. He’s absolutely brilliant and we’ve sort of discussed all the avenues if you like. He’s become quite a friend as well because he... We don’t just discuss the osteoporosis but we discuss my pain and all the things that go with it. I think he understands that osteoporosis alone isn’t. You know, once you have osteoporosis it is the trigger for other things. It’s been suggested that it’s unwise. I’ve had a second opinion on the surgery that, that you know it would just be too dangerous to operate again to put this right. So at best I live on painkillers and that’s basically my future I suppose is living on morphine and that’s what it’s left me with really.
The osteoporosis is under control. I had a DXA scan a few months ago and I’m waiting for the results of it but it. Every year they’ve been showing steadily, you know, that it is under control. So the treatments for osteoporosis are working. It’s the after. It’s what the damage the osteoporosis has done is what I have to live with now.
I mean the good examples are really easy when you consider the metabolic bone specialist I see. As soon as I started seeing that person then all of a sudden the picture became clear. It was instantly identified that it was spinal osteoporosis. It was explained to me clearly. I understood the condition. I didn’t need to ask too many questions. I was, you know, I was given enough information to digest and where I could get even more information. And that was a good. You know he was a, he was brilliant. He had a brilliant way of describing things. And that was the one extreme.
And then there. You know they, then you take the other extreme where, where your own GP doesn’t really understand about osteoporosis and still calls it brittle bone disease when it’s nothing like brittle bone disease. And you know they just. And they’ve got, they’ve probably something they touched on but don’t really understand. You know and they sort of start quoting things that are sort of 20 years old. You know and talk about HRT and things that we haven’t talked about for 20 years.
And also they, you know they, the bone, the orthopaedic surgeons that I’ve met you know there’s two bad examples in the beginning where they, you know, they didn’t really talk about osteoporosis whatsoever. You know didn’t even mention osteoporosis and I find that really amazing, you know that. But I think once I was in front of the metabolic bone specialist then it did. It immediately, you know, we knew where we were going. We knew what we were doing and as a patient that makes life a lot easier. You know once it’s diagnosed and you have a diagnosis then you can identify and you can go away and learn about the illness yourself then.
As I say, the only thing I can say is it’s still staggers me that, you know, when I was diagnosed with osteoporosis that the amount of ignorance, you know, in the medical profession. It’s still there. It’s still prevalent today really that, you know, that people have this perception of osteoporosis that, you know, it, they’ve got a preconceived idea it only affects 75-year-old people. You have to be a female and you have a hump on your back. That’s osteoporosis. It doesn’t affect anybody younger than 75. It certainly doesn’t affect men. That is the conceived idea, you know, and it’s a steep learning curve. It’s going to take a long time to change people’s mind set. You know hopefully we will achieve that. But, you know, I feel as a patient it’s an uphill battle you know that the ignorance is still out there. |
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Robert has learnt that having rest periods during the day enables him to contribute to the housework.
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So it’s learning all these different techniques. So that’s what the pain management clinic did. They got me out of the depression but then after I. That was the major problem and then we, we got round that one and I learnt then to cope with life and to prioritise things and to think, well I’m not going to do that. If I don’t want to do it I’m not going to do it and learn to pace yourself, not to go to this burn out and then you know. That’s what I was doing all the time was peaks and troughs all the time. Now I tend to do a little bit, have a sleep or a nap or just a break just to have a sit down. And then, you know, and then it really works, you know. And if I over do it shopping or anything that, you know, I know when to say no and to stop. And that takes understanding from your partner as well and from your family because your family have to accept that they can’t push you do to things. So [wife] will say, do you fancy doing this today and I’ll say, ‘I really don’t feel well enough’ and that’s it. Whereas before we’d, ‘Oh come on, you know, it will do you good.’ And then you’d do it under pressure and then you feel twice as bad afterwards. So I don’t get pressurised anymore. So I, you know, it’s a bit like having the life of Reilly in a way but, you know, obviously life isn’t like that and you know, life in reality we have to, we have to do so much, you know. We have to sort of contribute. And, and I find like I pick myself up and I push myself to do things a lot more. You know, I do probably. I don’t give in as many people like I cook. I do the cooking every evening. That’s my contribution to the housework if you like. I don’t just sit back and, you know, and give into it. I do actually contribute and I do the garden and I do a lot of things that a lot of people in my condition probably wouldn’t do. But, you know, I but I only do. I’ve learnt I can do a little bit and then just relax. |
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Stopping work was difficult for Robert because it wasn’t just about earning money but also about status, socialising and fulfilling his role as a provider.
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I mean my job in a way was a quite high status job because I was a sales director which was given my background was an achievement to get to that position. You know I sort of had to work twice as hard as everybody else. I didn’t go to university so you know. But I reached the dizzy heights and I’d been doing the job for about two and a half years when this happened. So I was, I was really on the top of my game if you like. I was in, you know, I was in the best job that I could have been in working for a company that adored me and I adored them. My future was tied up really. I was going to be the next MD. I was going to be on the board. Everything was going my way and then bang, this happened.
All of a sudden you go from hero to zero overnight. And the status side of it is that I. Don’t matter what job you do I think I don’t think it’s important I think with a man, I think whatever job a man does he’s proud of. If he’s a mechanic he’s going to be the best mechanic and he’s going to, he’s going to miss it which. I don’t think it was necessarily what I did. I think if it’d been any job I think I’d have missed the camaraderie. There’s a lot goes with the job. It’s not just the salary it’s your friendships. It’s your, it’s your way of going out of the house every day justifiably going out every day having your own space and then doing something completely different and then coming back to your family. That’s the big thing. You miss that sort of. It’s like if you have a hobby it will never be the same as a job. You’ll always find time to put your hobby off. Because if I say to [wife] now, I’m going to make a model aeroplane tomorrow and then [wife] wants to go shopping I bet shopping will win over the model aeroplane whereas if I was saying I’m going to work tomorrow then [wife] wouldn’t have any side of it. You know I’ve got to go to work for this family. And [wife] can’t argue. So your wife can’t. You know. So that’s what your job is, it’s a release to. I think it’s. I think we underestimate what our careers or our jobs are really. I don’t think they’re just a thing about salary. I think people go to work, it’s their release, their escape really. And I think that, you know.
And everybody, whatever job you do people would agree that it’s a social tool as well. And you know, to lose that at a young age it’s…. I mean you hear of people who retire who can’t handle retirement because all of a sudden they find all this time on their hands. Well I was like that but it was twice as frustrating because I was too ill to actually do anything so I was actually too ill to go and have a round of golf which I used to love doing. I was too ill to pursue any of my real hobbies so you’re left with sort of, basically what can you do, you know. You do the crossword in the paper in the morning and that’s your mental stimulation for the week. You know it’s gone. And, and I found that really difficult. And the status of putting a shirt and tie on, putting your suit on to go to work. You know being part of something. Being, working on a project that everybody’s, you know, bringing home in the evening, even if it’s stressful you thrive on the stress. All of a sudden that stress is taken away. Your brain is, becomes, you know, redundant almost. You know you’re…
My world just became small. I think that’s the best way to describe it is that I had nothing to talk about. I had, you know, no outside life because, you hare nothing. I mean I’ve got little hobbies now. I enjoy my garden now. I enjoy my tropical fish. They’re my little diversions but I couldn’t talk to you for an hour on my tropical fish or about my garden. It’d take me five minutes. Whereas your job, you could probably talk for an hour about your job quite easily you know, of what you’re doing this week and what you’re working on at the moment, what you worked on last year, what you’re doing next year, millions of things but, but you don’t do that with hobbies you know. It’s...
It’s the status I think more than anything else I think. It doesn’t matter what you did. It doesn’t have to be a high status job in the sense that you are the boss. I think whatever job you do, wherever you are, you will have status in that job because you’d been the best mechanic or the best whatever. You know it’s, I think it’s like I said earlier it’s the, it’s the camaraderie and the whole purpose of life. I think we’re all geared. I mean men more than women probably are more geared in that we accept that we will go to work at 20 perhaps or if you go to university or at whatever age we start work but we will do that until we are 65. I think that’s the way we’re sort of mentally trained that you know we, whilst we all moan at 50 that we’d love to retire early you know, you have to have something to fill that gap, that massive void. I mean and when you, my working day was probably 14 hours most days. You know it was and I used to obviously also travel away a lot. So I might go to work on a Monday and come home on a Thursday or a Friday some weeks or have two nights away or one night away. All of a sudden I had no like nice hotels to stay in and all the little things, going for a nice meal, and all the things that I did in my job. You know it. And also being away for two nights and coming home, the joy of coming home after being away for two nights. You know it’s a lovely feeling coming home that you’ve been away and your family have missed you and it’s lovely to walk in through the door. And all of a sudden you’re here all the time and it’s a difficult bridge to cross that one is. You know it’s a…. And also it’s difficult for your family as well because they’re seeing too much of you really. They don’t want to see that much of you [laugh]. |
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As a result of his spine collapsing, Robert has lost four inches in height and his stomach protrudes.
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I never had any physiotherapy after the operation so I never really... All my muscles have wasted away. All these muscles in my, in the centre of my body have just wasted away.
The other thing is because I used to be four inches taller than I am now. Part of the osteoporosis was my, when my spine collapsed that, you know, obviously I’d lost height. Now my organs have, have collapsed down as well. So I’ve got now a bulge in the middle of my stomach which it looks like a beer belly but it isn’t. That’s where my organs come out and that’s, that’s a really big, that’s a big discomfort. So I, you live with that as well and that, that’s.
All the muscles that have wasted away. Had I probably started working those muscles a bit earlier after the operation. So now my back muscles and my stomach muscles are really and it’s too painful to, to actually exercise them now. I can’t breathe in. If I breathe in using my muscles in the middle of my body I get a burning and that burning never goes away. It’s like a cramp and it, it really is a sharp cramping and that’s where my muscles have literally just wasted away. It’s got like dystrophy, just, just gone. So I, you know, it’s. It becomes sort of like a big swelling which is unsightly. |
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Robert suffered from severe depression and needed the help of a psychologist to overcome his negative emotions.
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The suggestion by Professor [name] was to have a one to one with a psychologist. She didn’t think I’d benefit from a team thing where we’d all sit round in a circle I think I needed one to one.
And I went and met this psychologist and we basically stripped down why I was depressed and we basically, you know, we went through all the problems in my life. Well the anger about the operation. Did I, you know, had to let go that I wanted to go and see the surgeon. I wanted him to, I wanted answers. I wanted him to tell him why, tell me why that he had done all this and why he had made these mistakes. And she, you know, we sort of broke everything down even to my family life to what things annoyed me at home and what things got in my way, you know, and how we had to deal with like [wife]’s mother was ill at the time. So we had to deal with, you know, that [wife], you know we had to deal with that and I had to deal with it better because I felt as if [wife] was rushing off to see to her mother when I was ill. You know and all this sort of problems I had. And basically it was there where I got the strength back if you like. And basically to regain control and you know calm me.
It was all down to this osteoporosis. It’s, you know, these mental health feelings and so it didn’t just affect my body it affected everything, you know. It’s a lifestyle change that really. It, it especially having a disease like this at my age I think, I think it’s knowing that you have to deal with something. I think we’re all trained to think we have an illness and two weeks later we’ll be better. We take a tablet and it will go away and when it doesn’t go away after so long you... It’s difficult for your carer because your carer is dealing with something that’s that she’s got to answer to and, and it’s awful for her because, you know, it’s not going to go away. So you have to look at it, you have to learn to manage that situation and think, ‘Well I’m not going to get better but I can do this, I can do that. I could, you know, what makes you happy.’ And then I just literally wrote on a piece of paper what, what made me happy.
And this is where the NOS doing the ambassador work for them and talking to groups of people was a blessing in disguise because after I came out the other side of the depression all of a sudden I was strong enough to think, well my life’s empty and they’re asking me to do these things so yeah we could put the two things together and it could work. And it involves me driving the car to different parts of the country which I love doing. I love driving. I used to do it in my job so it’s very similar to my job. I go out and I meet people and then win them over and tell them my story and go away feeling happy. And, and that’s how I’d describe my NOS work. And in the meantime it raises money and it raises awareness. So it, everybody’s, it’s a win/win. So that’s the therapy, that’s my therapy if you like. But it was, this, it was something like probably six to twelve months of going every month to see the, you know this psycho, psychologist and then her finally saying, ‘Well I think you’ve coped with it now. I think you’ve, you know.’ |
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Remain positive, try to keep your sense of humour and take control of managing your condition.
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I think men who have recently been diagnosed is be prepared for the, the brick wall that you come against which is, I think is, be wary of the depression. I think, it’s going happen. From what I hear from people who I speak to everyday it’s something that’s going to happen. But it, you know, it’s holding onto reality really. It’s putting your osteoporosis in perspective. And, you know once you do that I think you, if you. You know it’s… You have to deal, you know, get on with the cards that have been dealt really but you have to.
I think the biggest advice I can give is to remain positive. Try and keep your sense of humour and keep, you know [laugh] your personality because if you lose those you lose your very existence, your very being. And try not to sort of get down that depression route if you can. It’s just trying, try and keep ahead of it and try and keep, you know, as cheerful as possible. And, depending on your pain levels because, you know, osteoporosis can affect different people. I think you know, you have to learn to master the pain and get advice on that, you know. I would say my biggest thing is to be, you to be the master of your own diseases so you can manage the condition yourself. You have to not rely on doctors to do it for you, you have to. There comes a time when you manage your own osteoporosis and you manage how you deal with it and how you cope with it. You have to take charge because if you don’t the doctors won’t do it. You’re waiting for somebody to do it for you and it doesn’t happen. And once you’ve taken charge then you can move forward and you can be more positive. |
