Making decisions about knee replacement as an older person with multiple conditions

Well, the knee at the moment. I’m in bed now, I haven’t got dressed. The pain in my knee is bad, and that depressed you a bit, because I haven’t been out for well - that’ll be two years March.

Has it been that long?

[Laughs]

Oh.

I just get out of breath now and then. Yeah, but otherwise I can struggle on, no, I’m alright.

Well, the knee gets in the way because I can’t walk properly so I do get out of puff, so I do get out of breath, yeah.

Otherwise, no. I’m, we live in a mobile home, it’s not going upstairs or anything so half the time I’m laid, I’m in bed and I get up and we’ve got a recliner so I can put my leg up then.

So, it’s, yeah, and I can’t sit really on a chair because it just, at the back of the knee it’s just so, so painful, I just have to elevate my leg all the time, yeah.

And just taking painkillers and everything, but I’m really sick because it’s now affecting my life now. You know I’ve no quality of life with it, really.

Well, I just can’t go anywhere I used to. Like, you know, I live in a little village, and I used to walk up and down to the shops, and I can’t do that now.

I used to walk up, I’d get my messages and then go to my brothers, and he used to run me back down to my house from the village. But unfortunately, he’s got dementia, and he’s in a home now, so there’s no way I can walk up and walk down.

So, luckily, I’ve got my car, otherwise you know I wouldn’t be, I wouldn’t be mobile if I didn’t have my car.

I would have to rely on somebody else to take us. And I used to go, we’ve got a football field at the bottom of my garden, and I used to walk round there quite regularly.

I used to get a bit of fresh air but I can’t even do that now. I get, it gets that sore.

And the pain that you’re getting with your knee, is that affecting your sleep and being able to get enough rest?

Well, it wasn’t actually for a while, for a long time it wasn’t, but yes, it’s starting now.  You know sort of waking up through the night. And sitting on the side of the bed and until it goes. So that’s not good, either.

I can neither fully straighten nor fully bend my left leg, it just won’t go, so I can’t particularly lie straight on my back in bed with the left leg—I either have to be on my side or twist it a little bit into an unnatural position.

I would say sometimes that I don’t-, I think it has slightly affected my balance in that very occasionally it just gives way.

I’m using the stick just for balance but only when I’m outside, not in the house.

And with the pain that you experience, what is that like for you? How often does it come on or what types of things make it come on?

If I move it suddenly. If I turn round suddenly. Going up and down stairs is severely impacted, I’m not at all happy going up or down stairs.

Other than that, on the flat, I’m perfectly fine; not terrifically fast, but perfectly fine.

And what about sleep, has that been affected?

I do wake up quite a bit, and I do feel stiff. Sometimes I get up, go to the loo, walk round, get back into bed, but I have no trouble going back to sleep; that relieves it—and then I go back to sleep.

I take one lot of ibuprofen each day which my doctor suggested as an anti-inflammatory.

As I say, the only- you know, the biggest test is coming up and down the stairs. I shall know if it's got better because I’d be able to go up and down the stairs properly. I don’t like walking downhill either.

Is that the pain and the unsteadiness or-?

It’s the- yeah, it’s the pain. It’s the fact that I don’t feel I can do it quickly or- you know, it’s like taking baby steps when you’re going downhill to make sure that you don’t overbalance.

Well, because of, because we’re going out more and I’ve been out in the garden and everything I do find my leg really bad, especially it bothers me at night, it, it swells and it’s hot and it swells. And I go to sleep. I put a pillow under my knee so it’s raised up all the time and I’ve got painkilling gel for it and I’ve got painkillers for it.

And do you use those regularly, so taking painkillers or using the gel or is it if it just becomes too much or something happens?

That when I use it, well, I usually use it nearly every day I would say the painkillers and the painkiller gel. If it’s not bothering me, if I’ve had like where today I’m not doing nothing, it’d probably be okay, ‘cos I’m not doing anything. But if I’ve been out shopping or somewhere or even pushing the lawnmower or doing something like that, then it’ll play up at night, ‘cos especially when I, which it seems odd, when I’m in bed, doing nothing, that all starts then for some reason, it’s I don’t know, when you get off it, it’s as if it comes to life again or something, whatever.

Does it have an impact on sleep? Getting to sleep and staying asleep?

It does. It does, yes. Some nights I can’t get to sleep. I have my leg in the bed and out the bed, along the pillow and all over the place.

I think I’m pretty lucky in many ways, because I know that a lot of people have a considerable amount of pain and mine does vary a bit. And at the moment I’m going through a period when it’s not quite as uncomfortable as it has been. But, you know, I know it’s, it’s there.

I’m aware of my knees [laughs] you know? In fact, I mean, the knees do vary a bit. Some days, it’s worse than others, some days I’m having more problems from the hip - the hip that was done - but that’s more to do with when I lie on it in a particular way. One day it’s absolutely fine, another day it’s not.

But I think it must depend very much on what I’ve been doing. How I’ve been using my legs, and, you know, I play bowls. It’s something I took up when I had to stop playing badminton because of sort of high impact. You know, it was only social badminton. It was still too much for my knees - so ages back I stopped that and more recently I suppose four and a half years, five years ago, maybe, I started playing bowls, which I’d always thought of old man’s game.

My grandfather sort of play it, and now I always think that, but actually I thoroughly enjoyed it. I’m not terribly good, but I joined the bowl’s club, done something completely different and it does mean that you are doing a different type of exercise. But you are bending. You’re walking. You’re, you know, doing a lot of that sort of exercise.

I’m finding walking on a flat is normally okay. Up or downhill is not good, particularly downhill. But I sometimes have problems with the air - with the asthma - walking uphill as well. Walking on a very uneven ground, over rocky ground, stones or across ploughed fields or something like that is not good. It can be very uncomfortable.

Actually, downstairs is not brilliant either, to be honest. Some days I can walk upstairs straight and it’s no problem.

In the last couple of-, last week really. I’ve noticed I can’t walk very far at all. I usually used to go out with my husband with the dog, I can’t even go round our local village rec now without taking painkillers.

It’s affecting my hip and my back as well. Because my left leg's taking my weight, you know, it’s taking all the pressure of walking. And it’s very, if I sit wrong or if I sleep and I move, it wakes me up.

Sometimes it makes me shout out if I move quickly and don’t think about my knee first before I move. If I turn and twist or something. And the pain is actually all in the back of the knee.

And it’s the pain, it seems to be in coming through from the back, you know? I can’t really describe it. And down the side of my leg, down towards my ankle, and it really, really feels painful. I cant really say more than that, that’s it.

Yes, I think I’m aware more and more when I’m walking, I’m limping more, I’m limping more because [sigh] I don’t, my knee that needs doing, the bad knee, I don’t bend it more than I have to.

So, I walk much more with, with that leg straighter than what you would normally walk, you know how you bend your knees when you walk. And, and I keep that one straighter than I would have done in the past.

And, and that’s making me slightly, instead of walking properly it’s makes me sort of waddle along a little bit, you know. If one leg’s stiffer, you’re keeping it stiffer to stop it from hurting then you know, you’re not walking in a straight line, you’re, you’re walking well perhaps not, that’s not the right description, you’re limping more.

You’re swinging one knee out slightly more and I think that eventually that would have an effect on my hips, and it certainly has an effect on my posture. Because you tend more and more to bend forward. You don’t walk straight as you should, or as I should.

And that’s all the result of having a bad knee - it affects your gait, if affects your posture, and it affects yes - I waddle along rather than, or limp along, rather than both legs going in a nice straight line forward.

The problem with the knees, because I’ve had them so long, the issues that I’ve got with knees, is you- I tend to say, I put my brain in gear before I move—and if I do that, then I know I’m going to be all right. Like I- if I go to come up the stairs, if I walk through the hall and go straight up the stairs: no, I have to stop and say ‘okay, I’m going upstairs now’, and, you know, I’m okay with my knees.

And the same with going down, I just can’t get to the top of the stairs and walk straight down, I have to stop and say, ‘okay, I’m going downstairs now’, and take it step-by-step.

You know, it’s one of those things that I still know that if I do something out of kilter, or something like that, I’m going to get a pain, like sometimes laying in bed and I turnover and say my foot gets caught in the sheet or the duvet—and doesn't go with me, the pain is excruciating.

So, over the period of time you get to learn to- how to manage so you don’t get that situation. I mean anything-, I can’t move out of the way quickly, like, you know, if my wife says, “Oh, excuse me, I just want to get to the cupboard,” I can’t do it instantly, I have to say, “Okay, I’m going to move now,” and do it.

Yeah.

And the pain what- where the pain is- wash hand basin in the morning when I shave, if I’m standing up and the pain across my back is quite bad so I have to sit down now and again and then carry on sort of thing.

Well, at the moment they’re not very much because I’m not in pain. When the pain got really bad in November, or October, it was going all up my leg and I couldn't sleep, I couldn't find any way of sleeping that didn’t cause me pain, and I could hear the clicking—you know that my knees clicked, and [knee specialist/surgeon] explained to me that they were so eroded.

And actually, another thing that happened quite a few years ago: I suppose about 15 years ago, I had X-rays on them and they did show some erosion— but nothing much had happened about that.

So, the pain was really acute and we got to the point where I could barely walk, so I was sort of going up and down stairs on my bottom and struggling, so but I saw him because of the pain, I just decided to go privately and it went very quickly, I saw him within three days.

Even walking the dog around the house at night I have to walk carefully because I turned quickly on one occasion - he was going one way and I was going the other - and I fell flat on the concrete slabs.

I went down so quick that I was there before I even realised I was going down and I, I badly grazed my arm and it just happened turning, you know?

You seem to trip very easily when you’re older and sometimes on steps you - even going up steps you can almost not quite lift your foot. Although they’re only about seven or eight inches, which is a standard tread or standard rise on steps you can actually just catch your toe by not lifting your foot high enough and going down.

You absolutely have to make sure you’re stepping down properly. It’s quite a little thing really and if you don’t take care, you will definitely go down.

And the arthritis has stopped me getting into little jobs that would take me mind off it. You can’t, I can’t start a big job because I can’t see them through, ‘cause me arthritis won’t let me.

See what I mean? [Laughs] Now hanging out the washing takes like an hour whereas it used to take me ten minutes, fifteen minutes, I can take up to an hour now to do it because the shoulders don’t work like they should do.

So, hanging and so pegging it up. And the knee will only let me stand on it for so long before I have to sit down. So, I have to hang up a few things and then come in and sit down and then go back and hang up some more.

I recognise now that I know my muscles are not where they were. ‘Cos the other thing I was able to do was I’ve got an exercise bike and that was good and I have that, I’ve had that a long time. But then, of course, sitting on the saddle causes pain in my back, despite the fact I’ve got a gel saddle and all that sort of thing, you know. It’s not in my legs. The pain is in my back. And then, what with the knee going on that started paining me when I was cycling. And I could hear it, you know, it’s clicking away, clicking away [laughs].

It’s talking to you all the time. And you know, I just feel my left knee is gonna be like that soon. But my right knee now is, it, I can hear it all the time. You know, you’re getting it, especially if you get in a delicate position and crikey does it crunch. It’s like you can-, putting your trousers on. You know, you stand on one leg, put down one leg, because if I stand any time on my right leg, it’s graunching away [laughs].

Gosh.

It’s a horrible feeling really. It’s graunching away while I’m staggering to put the other leg in there. So yeah. Minor things like that, a bit irritating.

So therefore, she’s [sister who lives with her] had to do a lot more - so she’s had to pick up doing the shopping and, you know, making sure everything’s within my distance to do, so I haven’t got to carry stuff. So, I just feel as if I’m burdening her with more and more. 'Cause I can’t do it myself.

That’s difficult. Yeah.

Well, she has to go to work every day. So, I’m here on my own during the day but well, she comes home for lunch. So, I generally do the cooking for lunch and so on. But I’ve got to, I’ve got a pedestal to sit on, but it’s just, all of it is inconvenient, if you see what I mean?

It’s, it just makes my lifestyle zero. Because if I want to go out and see somebody, I probably can’t walk up the drive.

It’s just limiting in all ways which way.

Because, whereas I used to do the shopping every week, I’d go and get stuff every week or go and get things, I have to plan what we’re going to do, and I have to get my sister to get it, 'cause I can’t stand in a queue. I mean I was in the bank a little while ago 'cause I wanted to pay some money in, and I had to give up because the queue was so long, I couldn’t stand any longer.

Well, the arthritis means that I have difficulties walking down my rather steep stairs. And you know, putting my socks on, [laughs] cutting my toenails, that sort of thing.

I do try to follow a regime of either doing my oldies' keep fit class or exercises or a walk or swim every day of the year. Haven’t been very good just lately.

And, you know I can walk fine, it’s just when I go to bed, I don’t sleep. Because I can never get comfortable. The problem is not sleeping at night. That’s the main problem rather than pain or immobility.

I mean the awful thing about my knee was it was dislocating in bed: you’d just turnover in bed and the knee would sort of almost come apart—and you’d just have to lie still till it sort of sorts itself out.

And then, you know, sort of squish it straight. On really bad nights I would put my brace on in bed.

Goodness, so it must have been really affecting sleep as well, sort of day-to-day and getting around—?

Oh, yes, horrible. And because it makes you feel so ill when it happens - it’s- it makes you feel sickly and it’s really unpleasant.

Yes, it’s affected my being able to get out and about and meet friends like I used to, you know, I used to go out every week and at least twice a week and even sometimes, you know, two or three hours, I mean, just shopping, having a coffee, etcetera, but that’s been affected, and also, yes, I used to like to do keep-fit exercises and I found those more difficult to do as well.

And as I say, I used to like to walk a lot further, but now I tend to do my exercise walking round and round the garden [laughs].

You know, that seems to be the only way to go for any length of time is when I’m walking round and round the garden—if I feel it’s getting too much, I can sit down and rest for a bit.

And it has affected my gardening as well because I like gardening—but I find now I have to do sort of a quarter of an hour limping round the garden and then sit down for 10 minutes, you know, if I want to do any more.

I think my biggest dread [is] he’ll say, 'you've put on so much weight, we’re not operating, go away.'

When you’ve lost two and a half stone or something and then I’ll think well, this immobile, I don’t see how long that’s gonna take.

I’ve done, I’ve lost a stone just for my own just ‘cause I wanted to do an extra stone off before I went in for my back operation.

And I did it in the five weeks between seeing the consultant and - no, between my pre op and actually going in for the operation. But that was going down to sort of six, seven hundred, eight hundred calories top in the day, which is pretty hard going.

I dread the thought of doing that again. But I suppose if you have to that’s what it’ll be.

But I really don’t- but I was more active then and so I don’t know what it’d be like with how I am at the moment.

I bought a treadmill in the garage to get exercise and I was using that. I was half an hour a day on that. But I haven't been on that since beginning of August. So, it’s just sitting out there. Which is frustrating.

So I don’t need to walk down the road. I can just go out and get on my gadget, which I’m far more comfortable with. I don’t have to use the crutches, which aren’t, which don’t do your shoulders any good.

On the treadmill it’s much nicer. There’s no pressure on your arms.

I’m finding it more and more difficult to use my walker, you know, the treadmill in the garage; I have to say.

No, because the problem isn’t bad enough, it occurs when I sort of do a lot of walking, just generally and going around, you know, sort of walking and then sort of resting.

It- [sighs] it niggles, I’m always aware, and I’m aware of it now, I’m aware that there’s a little feeling of something in the knee—that I can feel it now that it’s not 100% like the other one is. But it’s not debilitating. It’s only if I walk a long distance that I suddenly find that it’s beginning to get a bit more painful now and I probably need to give it a rest.

Well, we go back to playing bowls because, as I say, that’s sort of three hours on- standing, by then it would be- you know, it would be beginning to play up again, and it might on some occasions sort of affect me slightly in going to sleep because there would still be pain in it.

But normally during- you know, a normal day it doesn't affect me.

So, it’s not affecting me in my normal day-to-day work, although I have just ordered an automatic car because I am finding with the restriction on the bending, that I can’t- you know, it’s- I’m having difficulty changing gear with it.

Because it’s that leg, isn’t it? It’s the left side that you would be- yeah—

It’s that leg and whilst I’ve been able to do it before, I’m now finding that, you know, pulling it back to get it back onto the pedal is— I think what it means is that the movement is probably getting a little bit less than it was before.

Because I’m finding it more difficult to actually operate that foot pedal.

I can drive, I know I said I’d ordered an automatic, that’s purely for my benefit and my, you know- I can still happily drive at the moment—although as I say, I do realise that the car needed changing and it was probably a good time to switch and make it an automatic, so... but I’m not at a situation at the moment where it is seriously affecting my ability to drive.