Four years ago when I had an accident on the farm when I fell off the hay trailer but 1987 was when I first it hurt my back first of all in the [name] when I worked in the [name] it’s got a lot just I’ve had back trouble for years at the lower back but I’ve been getting back high trouble higher up my back and I’m on painkillers now. I have to take them when I need them.

How often do you need them?

Well I’m supposed to take them three times a day but I some days I take two a day all depends what pain I get.

What else do you do apart from taking painkillers? Do you rest? Do you lie down?

Well it’s [sighs] not really no because I mean at work I’m using a, you know, somedays I’ve got to pressure wash the parlour and stood working, backwards and forwards over the wall to clean all the cow crap off. Then me back start aching and I put up for so long then I end up having to put everything down and just leaning on something just, you know, relaxing it isn’t really but it’s something.

At work you lean on something?

Well, yeah, I lean on hay or anything, you know, you know, or even on a wall, you know, just leaning on and just relax basically, you know, until the pain just goes away a bit. I it’s gets to that part sometimes when I think, Well I must be still alive because if I wasn’t I wouldn’t be able to feel a thing. You know, stupid way to put it but. Anyway the job I work at do on the farm it’s like what I’m doing is cleaning out feeders like with a shovel about a seventy foot long feeder, cleaning out the feed, what they don’t, you know, what’s not been used or ditching like, you know, cleaning out mud with a shovel bending and that [sighs] I still do I’m determined I’m not going to give in, know what I mean? I just got to keep going as far as I can. I mean it’s doesn’t matter when it hurts even sat in a chair some days it hurts so whatever I do, you know, if I stands stand at the kitchen sink washing up in one place, the muscles tighten up and then I go and sit down or whatever, you know. So I mean it’s [sighs].

But it is affecting you at work?

Yeah, yeah, yeah.

A lot most of the time, not most of the time feel it quite often [sighs] but, you know, as I said when it get. Damp weather, damp cold weather it hurts, like this past week hasn’t been too bad.

I had I had a couple of times like I take a painkiller [sighs] relax like, you know, if I go home get dinner and what have you it goes off and then I go back to work start again and that. Some days it comes back on again like and I, you know, take another painkiller but I don’t want to appear, you know, proper pill popper, taking them willy nilly, you know.

Yeah, I don’t want to turn up, you know, like I said if I had that conscious thing where I’d hurt my back then I wouldn’t do anything. I won’t, you know, I say, I can’t do that might hurt me back. You know, you know I just want to do it and if me back hurts well tough well, you know, yeah. And that that’s what’s annoying really that I’m trying to do what I want to do and I get this trouble in me back and I get and it’s a vicious circle sometimes [sighs].

Like I haven’t slept for lots of years now. And so I never sleep very well but I’ve become accustomed to that. And then I just have to pre-think everything. So, you know, I work away for, I stay one night away from home and, and, and all my, all the people I work with must think I’m really scuzzy because I literally work a wardrobe out where I just change an underwear. Because if I take my work and stuff with me then I can’t carry it. And so I’ll carry it all right for the first 20 minutes and then thereafter all I think about when I walk is pain. And so it’s just, that, my mind is just constant, all my thoughts are pain which is quite pathetic really but, and then during the day I suppose it’s hard because if there’s lots of stairs involved and I live in a house with lots of stairs, but, the idea of going up and down for another set is just like, and so I, I’m, and so I’m like under-active really. And it’s not that I’ll use the use the lift it’s just that I’ll just not go.

And so I become quite lazy. And so I tend to just sit where I sit and work, and I teach so, when I’m teaching my brain’s occupied by something else. And so that’s really nice when it’s not the predominant thing in your head. But when you’re just walking about it’s predominantly don’t, bus better not come now because I can’t run for you. Which, when I’m surrounded by all my peer group who are, area still young and still getting on with life and still, still going snowboarding and still being active, it’s a bit, I feel a lot, as if I’ve let myself go. Even though I don’t really have any control over it.

Yeah, I can walk, I can walk for a very long way. That’s why I get no, I’ll get no mobility assistance. But all I think about is pain.

Are you in pain when you are walking?

I’m in pain when I’m here, when I’m, you know, my neck, if I, because I’ve sat here for quite a bit now, talking about myself. And so that, you know, that, so everything hurts but it’s not an incapacity hurt, it’s just a fact that my brain just constantly thinks about pain. And so, and I know that you can do things, like say if I’m fully engaged I won’t think about but then the after effect is the fact it all catches up with you.

But if, if I go to walk it is literally how do I, can I walk that far? And, and the answer usually is yes I can? Can I carry anything? No. And so, and that’s where life’s got little in the fact that I can walk down to the end of our, our shop in the street but I can’t bring a pint of milk home with, you know, three or four other things because it’s too much to carry.

And then I am strong, bullish, so occasionally I will carry like big things. And I’m fully braced and I know exactly what I’m doing with my body. And then when I, and then when I put them down, just carrying them up a set of stairs, I’m like some old woman. And it’s like I’m bent over and my backs gone. And it’s just quite, just a bit fed up really with it.

Now I have to worry what I do because of a certain amount of pain in my back and the os-, with the osteoporosis and through the operation, which has left me rather a-, unable to do a lot of work what I like to do. Which, I just work for about ten minutes, sit down for a few ten minutes and get rid of the pain in the bottom of my back, and then I carry on again. I try, not to let it affect my life, but unfortunately it does. But I’m allowed to take eight painkillers a day, but I only take four because I don’t like taking too many tablets. But that’s how it, I’m, luckily never had a broken bone. And so I’m very conscious of, of the fact that it could happen. So I, I monitor myself in actual fact, you know, what I do. And that really brings it up to basically what, what I am this present day. So I just carry on as best as I can.

So when did you start experiencing bad back pain?

Very, very bad back pain, after I had my operation.

Three years ago?

Three years ago. It really really got bad. But before that I used to tolerate it. But it’s gradually got worse now. But the, I read, I belong to the Ileostomy Association and they, that says that after the operation I had it does cause a certain amount of back pain. So that’s probably why, possibly I, it’s worse than it would be. But I have to put up with it. So that’s it.

If I’m working in the garden and I’m bending down, it hurts me. And I manage to, what I do is to sit down for a few minutes and, and I get up and start again. I can’t walk very far these days because it hurts me. I use a stick, as I said, now and that does help me considerably. When I first get up in the morning too, it hurts me a lot. We recently just bought a new bed and we bought a memory foam mattress and that has helped considerably. We’ve only had it about three weeks, but I found that does, has helped.

But I do have problems sleeping. I do sometimes get terrible cramps in my legs. Whether it’s anything to do with, with the osteoporosis, I don’t know. But sometimes it’s so bad, [name], my wife has to rub my legs to get rid of the pain.

What else helps you when you, when you have that pain? Resting?

Resting, always I find if I sit down then it, it eases, and I then carry on again. So it, it, rest does help considerably.

So the, the pain is triggered by you doing too much?

Yes, yes, yes. That’s why I, I make sure I stop then. Because I know I could be, you know, if I carry on I’m going to be in agony for the rest of the day.

Sometimes it worries me when I can’t, I get annoyed with myself because I can’t do what I used to be able to do because of the, basically the back pain. And one minute I get pains in my leg also if I, you know, I get pains all over at times. And I get frustrated because I can’t do things I used to be able to do, especially my garden, which is my pride and joy. And if I want, I grow all my own plants from seed. And now, where once upon a time I used to just stand at my, in my greenhouse and prick all my plants out, I have to sit down and do them now because of the pain, the back pain and my legs hurt. So that’s one thing that annoys me. But quite often I’ll bring my plants down in the house and sit down in the house and do them while I’m sitting down.

I have lower back pain and it isn’t a nerve impingement. it’s certainly an ache in, down the lumbar region. And there is no referred pain it’s just over the lumbar vertebra. And I’m very conscious that I have to stand upright because I find my back gets tired and I start having endorsal kyphosis. So I do make every effort to stand up, sit up.

And what else do you do when you, when you’ve had that ache? That pain? Do you take painkillers or?

Actually if I lie down for just five minutes the pain goes. And then I just carry on after that. If it, if I find that, it hasn’t gone I might take a voltarol but I’m not one for taking tablets actually. I don’t like them very much [laughs].

Voltarol?

Yes.

But how often do you tend to have that pain? Everyday or…

It’s when I get tired. But if I don’t have a rest after lunch, just sitting in a chair or lying down for twenty minutes, half an hour I find by the evening if I’ve got to go out and walk around places I am uncomfortable. And I’ve never had anything like that before. So I just presume it’s osteoporosis because it doesn’t feel like any nerve pain or sciatica or anything like that.

For how long have you had that pain?

Do I have to own up to this? [laughs].

Sorry.

Probably about a year now. Hmm. Hmm.

Has it increased in intensity or is it always the same?

No, I’ve thought about that and I think it’s getting better. I think I find that I can do more, particularly if I’ve gone for a walk in the morning and got the circulation going and so on, it does help enormously.

To what do you attribute the getting better?

A combination of everything. I hope the alendronic acid is working and the Adcal, because it’s absolutely revolting to take. But, I hope it’s a combination of that, better diet and more exercise.

I’ve always eaten quite healthily but now I’m a bit more conscious of I suppose more, more calcium, yeah, so more milk, more cheese. And try not to get and try not to get [laughs] overweight.

Yeah, I think well, certainly from a point of view of going to the gym. That’s made me it’s certainly made me more conscious of the need to take exercise whereas I was a bit lazy before and now I try not to be lazy. Physically lazy that is. And then, what’s the other thing, I’m sort of wary now of physical of taking any risks. I’m much more careful. I mean I mean I would not run for a bus. I don’t do anything in a terrible hurry.

And I don’t go skiing anymore because what’s the point, if I break something it might not mend so easily. I mean all the doctors say, Oh, don’t just carry on as normal But I think, Well, why, why take that risk I’m not I’m not prepared to take that risk. Anyway, it’s no great hardship. So, yes, I’ve changed my lifestyle a bit but not very much.

What about things like lifting heavy objects? I mean you do gardening?

I still lift but I lift very carefully. I bend my knees and I try and do things very slowly. But I wouldn’t I wouldn’t lift anything ridiculously heavy on my own. I would get someone to help me. No, I’m more cautious.

Do you remember how you felt? When you were able to describe pain and that people understood exactly what you were referring to?

It was a relief, you know, when they knew what kind of pain I was having, because its very difficult, I find it difficult to describe some pains, I mean if it’s a sharp pain, yes, you can say sharp pain or whatever, but I find the pain in my back I don’t just have one pain, it is not just the one thing, its other things that are paining as well. And I find that very difficult. And when she, when they, when she said, Does it hurtis it worse when you do this, does it bring it on And certainly it does. And then its used to, what it doesn’t do so much now, I used to know when it was starting off and it would get worse and worse and worse and it was like a clamp round my middle, squeezing, squeezing and just absolutely awful. But now I can, I don’t let it get that bad. I try not to let it get that bad. So when I am feeling it coming I think, oh I will just sit down for a minute or two until it goes. Even in the kitchen I’ve got cushions on the back of my chair so that I can sit back and oh have five minutes.

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.

When I’m in the bed relaxing, if I have done a very heavy lifting, anything, not heavy lifting as like heavy bags, but if I do a heavy shopping. Before when I did not know that this weight was affecting me, if I do shopping and come back, then at night when I sleep I used to get a pain in my chest exactly in the middle as if I’ve got a heart attack. And that pain doesn’t go. I cannot sleep. I cannot sit. I cannot do anything. Tossing and turning. Can’t do anything. Just getting up and down. Getting up and down. Sometimes I come downstairs, sit here. Can’t relax. And then go back again sleep.

And I get painkiller. And then pain, after the second lot of painkiller, the pain releases. And when the pain releases within a second my eyes close down. Then I don’t know what’s happened. And then I wake up after about seven oclock or eight oclock.

But my pain always starts like one oclock, two oclock until six oclock in the morning. Or maybe five oclock. And as soon as it release, the pain release, then only I can sleep, for a few hours.

So you sleep very little?

That’s the reason I can’t sleep continuously at night.

So on average how much hours do you manage?

I do manage to sleep about five, six, six hours, five, six hours. But I wake up in between.

Only recently since I’m taking Protelos I don’t wake up at night as such. And now I don’t do any heavy lifting at all because I know that I can’t do it.

During the day I feel tired. I yawn a lot sometimes. And then that’s what I feel. But I think now I’m so used to this, this type of life. it’s only since last, I think since one year since I’m taking this Protelos I feel better. And the painkiller helps as well with it.

But I do full five days because I don’t want to keep one day off. Because with osteoporosis if you don’t work one day, the next day you down very quickly. You’ve got to keep yourself active all the time. Relax in between. I do my work, relax and do my work, relax.

Even while cooking I have to sit down. I cannot continuously stand. So I will cook. Do a little bit of work. Come and sit down. Do something while sitting down, my paperwork or something. And then I work. That’s how I do my work. But I, I don’t stop thinking that oh, I am in pain. And I do this. I don’t do that. I just do continuously work.

Oh yes, I can’t do what I could do a couple of months ago, or six months ago. Things are getting that bit harder all the time. And of course my breathing is not what it was a few months ago. So that’s getting worse all the time.

Okay when you were first diagnosed with osteoporosis were you able to do most things?

Oh yes. I was doing everything then and I mean it’s only gradually that it has gone worse and worse.

And now you have problems, difficulties in breathing.

Oh yes. I have. I can’t stand up straight, you see, I can’t expand my lungs at all. That’s why I have got the oxygen.

Okay so you need to have oxygen the whole time.

No, more or less. I can leave it off now. I mean I’ve had it on all the morning. Probably if I was to pull it off now, probably it would be all right.

But then when I start moving around I then cannot breath.

You can walk just inside the house?

Oh yes. I don’t walk out, because, you know, I can’t go very far. Without it I would be gasping.

And what have the doctor or the health professionals said to you in terms of what you can’t do?

They haven’t said anything. They just said, Well you know you have got osteoporosis and everything is collapsing That’s all I’ve been told.

My back isn’t particularly troublesome. I don’t get a great deal of pain with it, except now and again. it’s only now and again, but I get sort of weary with the bone, they told me it’s because my bones are under strength. But I sort of get very weary with it.

What else helps with your breathing?

Nothinghelps with my breathing. Apart from the oxygen.