Really going up and down the stairs and getting up and down from the sofa and actually getting down on the floor with my daughter. And now none of those are a problem. Ironing was, had to be taken in short bursts ‘cos I got too tired and too achy standing up for a long time but fortunately I can do all of those things now [laughs] I try and suggest that I can’t but it doesn’t kind of wash with my husband anymore [laughs].

So kind of life now is so much better than it was a year and a half ago in terms of what I can do because I am so much more mobile. I still can’t crawl across the floor but I can walk across the floor on my knees and I can get down and up again quite quickly so, and I can run up my stairs which a year and a half ago I could barely walk up them. So, you kind of I, it’s, you know, my, my joints are so much better than they were a year and half ago. I, I’d have been much happier you know when I was diagnosed if I knew it was going to get that, that good. I really didn’t think I’d be able to do what I can do now. So but I don’t know whether that’s the same for everyone or whether I’m just really lucky on the drugs, or, or what.

But you got to keep doing a bit of it, whenever. Whenever I’ve go up, I use the old stairs and get my legs going, you know. One time when I first started this, you know, I was so weak I had to throw myself out of the chairs to get out of here, just to lift myself up was absolutely, well almost well it wasn’t impossible eventually I made it. Even to get off the toilet, it took me four minutes, something, on average four minutes to get up off the toilet seat.

I had to get my walking stick and hold, and get it around the handle of the door to pull myself off the and so it went on. To get out of the car, my wife had to get the walking stick and pull me out of the car [laugh]. It really hurts to think that you can come from that to this but then that’s, that’s the complaint, you know. So after going, going through those early phases of the disease when it hits you so violently, some people of course, it, it doesn’t it just builds up gradually;

But even the menial things you know even like the stairs, stairs are a nightmare to me, not going up them, coming down them because I got no, how did my specialist put it to me one day when I tried to explain, and he said ‘Think of a car and think of that car with the shock absorbers in it, and when the shock absorbers go in the car it doesn’t bounce, that’s your feet’ he said ‘that’s your feet’ he said ‘so whereas you can go up, you can’t come down.

He said ‘So always think that way’ he said ‘and if you’re going to come down stairs, come down on your side, walk on your side to come down step by step by step’ but that’s difficult when you’re in shops or you’re somewhere because you know, you get these people looking at you and think you know, ‘Shes not old, what’s she doing? What’s she walking like that for? Shes not an old person, only old people do that. Or you get an old person coming up on the same side as you and you just, you know who moves first? I can’t move because I’m scared if I leave go of this of falling.

You know, so it’s little things like that, you that sort of I don’t, I don’t know whether they annoy me or they, they just, I’m aware of them, so I tend not to do stairs. If I see somewhere that I have to go up or down, if I go, if I go anywhere the first thing I look for is a lift, or an escalator, but the escalator has got to come down, it’s not going up, it’s got to come down, you know, it’s, it’s so many, so many things that change you know I could probably go on for hours, but everythings scrambled in my head.

Before I had the elbows done, I was fixed virtually at like a 45 degree angle and I used my shoulders to move forward and backwards to give myself reach and things like that. It affected me with everything. I couldn’t reach into cupboards to get things out. I couldn’t, you know, to get down to the floor it was, you had to reach so much further. It affected absolutely everything.

When the first elbow was done I noticed very, very quickly how much I had. I mean, within, the next morning they take the dressings off and make you move it and that’s frightening ‘cos it’s huge, it’s black, it’s horrible but you can already see an improvement because you have a virtually straight arm which you haven’t had and you know you can get it back to the bend. You just need to keep the straight so it has to be kept into a splint for a while but it’s amazing I, it’s the best thing I ever had done. Yeah, definitely. Changed my life.

I’m already having to use a wheelchair on, you know, occasions where the walk is longer than 100 yards. I mean we went to see Madam Butterfly at the Albert Hall last night for example and parked in, in Hyde Park which wasn’t very far away but too far for me to walk. So, you just have to bite the bullet and get in this wheelchair which you don’t actually want to do but it’s the only way that you can actually get around and, and do things that otherwise you wouldn’t be able to do. So there are all sorts of psychological elements to having this disease that are complex and difficult and emotional and painful and you have to, you just have to come to terms with.

Four wheel trolley.
Yeah?

Yes.
How did you come to the decision to get one of those?
Because when my husband died, I sold the car. We’d only had it a year, sold it back to the garage he’d got it from. Well now, unless I got a taxi, I can’t walk the length down to the village, to the post office, to the chemist, and that little few shops up and down there, and so I decided, well, I, I can drive a trolley. I used to drive a car so it can’t be all that difficult. And we, [daughter] took me into the shop and we just picked this. It’s only got thumb controls. So as I can use my thumbs.

Yes. One is forward, one is for reverse, that’s all. And to stop it, you just take your thumbs off the levers, you know. They weren’t terribly helpful, in the shop where I bought it from, which is called Mobility. For instance, I’ve been back since and asked if they have a cov, like a canopy to fit on it, so that if it rains, you know, you’re in the dry. ‘No, they don’t make it for that model. ‘Well do you have a cape with a hood and that to go over?’ ‘Noo. Nooo, we don’t have one for that model. Which I don’t find very helpful, you know.
I’ve got a motorcycle cover, which I keep over the thing. We did think about, [son] thought, my eldest son, thought he’d make a ramp to, so I could get it up into the shed that’s there. But it’s impossible the door’s not wide enough. So it has to, and besides which, it’s electric, it’s on charge all the time and so you wouldn’t be able to charge it from the shed, unless you had a very long lead. But I have it through a hole in a window frame in the kitchen, and that comes through.
And does the, I mean, it, it gets you there and back?

The charge?

It doesn’t run out or anything, it gets you far?

It gets me from here down the bottom, to the village.

My hands are obviously one of my worst affected areas and it’s just the constant jarring of changing gears and that, that’s really what it is. At least with the automatic, my hands are both on the steering wheel because they’re not strong, my hands, also I need two hands always on the steering wheel to get the maximum grip.

That was really all it was for the automatic makes it and I drive to, a long distance when I usually work and it will be up to forty to eighty miles so constant jarring was, did, did no good for my joints at all. Again that was another thing I’ve really hung on, I hung on to ordinary manual car as long as I could because I did not want an automatic but it got to a point where my husband persuaded me I had to have it so

Are there any other things when you’re choosing a car that you try and look for?

When I, when I’m looking

To choose a..?

Yep, I have to go around the car to make sure I can undo the handles, the boot. I spend ages kinda looking at can I, because sometimes the, sometimes handles are, are in a way where I can’t turn my hand to actually, they, they’re just a little bit clipping and I, I can’t bend my fingers that well so I can’t undo the boot so the handles have to be a particular way in a boot. The key, an important thing, I had a lovely gentleman, I, he was recommended to me by the occupational therapist, a local man, who came round one day and it, he obviously does it in his own time, to find out if there’s he can make which will help things for you, and I can’t turn the car keys.

So he made this little wooden contraption for me which I loop over my car key and gives me leverage to turn the key, which is probably my most precious item because I couldn’t undo a car. I couldn’t start the car without it and all he did, he made it for me so I have to make sure I can do the keys and that this thing will fit will fit through my little contraption and that I can do the knobs and things and I’m comfortable that the seat positions are comfortable. So I do spend quite a lot of time when I’m selecting a car.

So ideally when I, you know, I go out and think, ‘oh I really like this car’ and I get there and I can’t, I can’t cope with the, the handles are ridiculous. I can’t open the doors. I can’t open the boot. I can’t reach the boot door when it’s open. You know, some of these three, they go right up high and I can’t reach them because I can’t stretch out my arms out fully to bring it down, so it takes a long while for me to choose a car.

Yes. The first car that I had, normal car, was automatic and it was, it was a Triumph. So the seat was fairly high which solved my problem seat-wise. So that was OK for several years;

Then with the destruction of my arm joints, I found it difficult to steer. It was the steering that became difficult. Eventually I, I couldn’t steer it well enough to be safe driving it, so I had to sell it. I went down to the TRRL [Transport and Road Research Laboratory], the motor place in, I can’t remember where it is;

But they test out cars and do all sorts of research and they were incredibly helpful. They, they tested my strength in my arms and they let me try out various cars with different steering and they recommended to buy another car and have the steerin; brought down as light as is possible to have the steering on a car so that I could cope with it. There were a few, sort of minor changes, like altering the hand brake so that you didn’t have to sort of pull on it, quite so hard to release it and altering the device that you have to pull in order to move the seat forward and back and putting a strap on the door so that I could reach it to close it once I got in;

And a very wide mirror because my, I couldn’t turn my head very well at all and that gave me good enough vision around to, to drive safely. So that was marvellous to begin with. The car was very easy to drive with the, with the steering being so light that was the, the advantage of having the car adapted;

But with the increasing problems with my knees and arms, I found that even the steering became difficult. It was easy enough to turn the wheel, but the movement on my arms was very painful and I ended up having to sit very close to the wheel with my arm completely bent, my left arm complete bent, so that I could turn the wheel without pain an; that didn’t seem a very good way to be driving;

Also I could still at that stage get off an ordinary dining chair, and the car seat without assistance but when I had my knee operation, I lost that ability so I couldn’t actually cope with getting in and out of the car, either. So I had to give up on that one, then.