And I mean it was, I had them both done under epidural and people re-coiled in horror, when I tell them I’m awake during the operation. Oh you’re so brav. You’re so wonderfu. And it’s not bravery, its complete cowardice of being put to sleep and terrified of never waking up. But you know the operation itself was, it sounds bizarre, relatively easy, for want of a better word actually quite interesting.

it’s the being in hospital and the being reliant on, when you’ve been reliant entirely on your mother and father to take care of you for so many years, and they have, they have to turn you over to nurses who, by the end of four operations I knew really well. But at the beginning, they were all strangers to me and they were having to look after me, which was very difficult. it’s back again to going to somewhere strange, going amongst new people, strange environments, that was, that was the most horrific thing. And honestly being honest, going in for my first operation, the thing that worried me the most was that my period was due when I was in there and it just horrified me to think of, you know, them dealing with all the you know.

So do you feel as though you know you’ve been involved in the management of your RA?

Probably not as much, thinking about it now, as a 29-year-old mature woman, rather than a as a five year old child, probably not as much as, as I would have liked. It does tend, thinking about experiences and as I say, I’m looking back so it might be a bit off but sort of a, it’s sort of a one-way street almost. You sit down in front of them. They throw a lot of drugs and treatment at you, you know. They say have this, have that. Whilst I’m sure they wouldn’t any objection to you asking any number of questions. I think it’s a only, only relatively recently and not even now for a lot of patients that you feel that it’s your duty to be involved more, to ask more questions.

I think that is only a relatively recent thing that maybe ten and twenty years ago, that’s what you were expected to do. You go and you sit there and you say, I’m sick make me bette. They give you something and they make you better, that’s it. You don’t ask questions. You don’t interfere. You just let them do their thing and I think that probably when I was growing up that’s probably what we did, you know. We let them guide us, which is you know, not necessarily a bad thing cos we you know, they know about these things and you don’t, in the most basic terms.

But as you get older, as you’ve had the illness a long time, you learn about how your body reacts to certain things or deals with certain things. And then after you’ve had it a certain number of years as I have, you do then begin to answer back a bit more, to ask more questions. Also of course the other thing is that, you know, you sit there and they say things to you. They say, Take this drug or have this treatment, or have this surger and you don’t think about half the things you want to say until you’re back home. And you think, Oh I wish I’d said that’ and I wished I’d asked him that. And with the Internet, which is a great thing, you can go on line and find out about of things that, you know, you could have asked the doctor.

I know they say you should write a list of questions but I’ve never really done that. But no I think definitely it’s only really very recently and certainly with a lot of the women that I’ve seen on the ward, other patients, when the doctor comes on his rounds in the morning and speaks to them, they lie there and the doctor speaks to them and then the doctor goes away again. You know they don’t, it might be because they don’t have anything to ask him. But I, generally speaking he’ll always spend longer with me because I’ll always say, Well what’s this gonna do? How long is this gonna take? What affect with this have? It gives you more experience I suppose as you get older and you’ve got 24 years of experience so, it’s a good thing on the one hand and a bad thing on the other I suppose.

I definitely would say the most difficult thing is that, every single physical task is, is made more difficult. And not only that but when you are dependent, which I am at the moment, I haven’t always been but I am at the moment, you rely on, you go to everyone else’s clock, to an extent. My mother and father both work I have to go to the toilet in the morning before my father goes to work. I have to get up at half past five to go at quarter to seven, go to the toilet before he leaves for work. I’ve sort of trained my bladder to be, to be still all day till he comes home. And then I have to go to the toilet at night at a specific time so that he can go to sleep to get up the next morning. And, you know, they don’t have much of a life, they don’t have much of a, a social life but they, as I say, they work and they’ve got to go shopping and do whatever and obviously they try and accommodate me a lot but to an extent you’re going to somebody else’s timetable.

You can’t just, I mean it’s so frustrating to sort of sit on the edge of the bed there and there’s something you want just there and you can’t get it. it’s just there, you could practically, you know, lean over and touch it but because you can’t stand, you can’t get it and its ridiculous. I mean I sit here sometimes and think, Well the toilet’s just there, its 15 feet away But it might as well be a hundred feet away. And that is, as I say, that’d be a big achievement, to be able to do those most ordinary things on my own and you know by myself and without help.

The main thing I suppose is just making the most trivial basic things a big deal, things that most people wouldn’t think about twice, bodily functions, washing, dressing, putting make-up on become something that you have to plan, something that you have to think about and something you’ve got to prepare for. There are lots of things that don’t even occur to, you know, to my mother that I can’t do that you just wouldn’t think of. Putting mascara on or oh I don’t know anything, putting moisturiser on or washing your feet or. As I say one of the, the greatest things for me if this, if these operations get me mobile, one of the best results would be for me to climb a step. Which seems, you know, people don’t think you, you don’t think when you get to a step, Oh I’ve got to get up that now you just go up it. But, you know, for me it’s, it’s a big deal. it’s like going in a, going in a shop where you’ve got a big heavy door in front of you. Most people they don’t think about a door, they just open it and go in but if it’s a big, you know, a lot of shops have got automatic doors now but, if it’s a big heavy door and there’s no-one around to open it for you and even if there is a lot people just walk straight through and ignore that you, that you even exist. it’s every little thing, every move you make, every time you do, for me, every time you do anything. Turning the telly over with a remote control, even doing that is, is done differently for me than it would be for somebody else.

It doesn’t mean it’s necessarily difficult it just means that it’s got to be thought about and a different way, you find different ways to do all kinds of things, you look at aids, people give you aids and you get things on sticks and things like that that help you reach things. Every little thing is, you know, and when you spend so much of your energy and your, your emotional and physical energy on the little basic things then there’s none left for the, for the other things, the, the nice things.

As I said when, you know, if you want to go out for the day somewhere shopping or for lunch, if you’ve got to get up and get washed and dressed and put make up and jewellery on, get down the stairs into the passage and then down another flight of stairs, get into the car, fold the wheelchair up, put the wheelchair in the car, then get the wheelchair out to put you in the wheelchair, go round for a couple of hours wherever you are, then do it all again in reverse. If you’re lying in bed, especially if it’s a bit rainy outside or whatever you think, Oh to hell with it, you know, I’ll just stay in it’s easier, it’s just easier to stay in and do nothing rather than do something and that obviously has dangers in itself because if you do that enough it begins to be, not psychologically difficult to go out but it, it makes it, you’re a little bit nervous.

But as I’ve gotten older, it’s the most dehumanising thing. I don’t understand for the life of me why people would want to claim benefits if they don’t have to, because many’s the time I’ve had the doctor come here and they sit you down and they ask you the most embarrassing questions about whether you’re incontinent and all kinds of things and, you almost feel like you’re begging for money, which I absolutely loath I mean it would just be the greatest thing to tell them where they could stick their money to be quite honest. I genuinely don’t understand why anybody would want to live off the state if they didn’t have to. it’s so much easier to go out and get a job than have to plead to some doctor that you’ve never met, obviously it can’t be somebody that you know, somebody you’ve never met in your life and try and explain to him in the space of half an hour, or hour, all the difficulties of your life and why you deserve this, this benefit or that benefit. And you know, you have to, it sounds awful, you sort of have to lay it on thick because you know, looking at you, it’s very difficult to see what you’re problems are. You have to talk about the extremes of, of your illness and your disability and that is, as I say, it’s obviously be examined and now, I mean as a grown woman, you get used to it simply because it’s happened so many times but when you’re a teenager to be poked about and told to lift this and take off your clothes to just your underwear, to a doctor, a male doctor in most cases, is mortifying.

And I would, I’d get very angry and Why do they have to check up on me Why can’t they go check-up on the you know dole dodgers and people who, you know, are claiming housing benefit and claiming the dole when you know they re cleaning windows and painting and decorating I would get very, very angry and my mother would just say, Oh you know, it’s got to be done. it’s a means to an en, which is, is perfectly true but it’s not something I would do or want to do in a million years, if I had any other choice.

We had recently, without going into details, had a bit of difficultly with the social services over my benefits, over payment of benefits. Letters going back and forth and talking on the phone, and just so badly want to say, Look I wouldn’t be taking a penny of your money if, if I didn’t have t. So it’s not their fault, they have a job to do. So many of the people that they deal with are not genuine and they’re not in need.

And how did feel, like having the epidural and being sort of awake for it?

The first time I was relatively active minded I like to know lots about everything. It was interesting seeing what they do and people flitting around you and you are the centre of attention and I always like being the centre of attention. It didn’t trouble me, my father was, as I say, horrified, you know, the thought of me being, laying there awake. But somehow, it seemed to me as less of a big deal, even though you’d find that difficult to believe with surgeons and hammering going on every minute, but it seemed somehow, because I’ve spent most of my life lying on my back, while doctor’s pulled this and pushed this that way and the other way. It seemed like less of a, less of an operation, more of a procedure then, if I had it done that way. It is difficult to getting in, the spinal in in the first place, you have to curl up in the foetal position and that can be of difficult. And you’re always under the threat, and it was threat to me of, if they can’t get it in, if they can’t find the right space in the spine for it, then you have to have a general anaesthetic. They have to put you to sleep and that was always a, as I say, a threat for me.

But no as I say, the last, the first two, it was you know relatively trouble free. It varies a little bit from time to time. The first time I was a little bit worried because I could wiggle my toes and I’m lying on the operating table and I said, I can wiggle my toes, is the OK? Does that mean I’m gonna, you know, they’re gonna cut into me and I’m gonna feel it No, no, that’s fine Just depends on how much of the juice they give you.

But the second time, I was literally paralysed I couldn’t move a thing and it really, it’s not a very pleasant feeling at all, you know. You trying to move your foot and it just won’t move. So that was a bit unsettling. But the first two were fine. The last two, I had believe or not, some pain cos they put a, I presume they still limit the blood flow, they put a tourniquet on the top of the thigh and obviously towards the end of the operation, and particularly on the last operation, where they, because my bones are so soft they broke my leg, and obviously they had to put a nail in my leg and that too longer. So I think the epidural was literally was running out. So it was, not stabbing pain but more of a dull ache, that wasn’t very pleasant, the last twice, toward the end of the operation.