You mentioned earlier on that you realised that this was something you’re going to have to live with, can you tell me about how you came to that decision?

How I came to that decision was I was in hospital and I had been diagnosed for maybe three years and it was one of a series of long sleepless nights, and you play everything over in your mind and I more or less lived between one flare-up and another.

But this was probably one of the worst flare-ups I’ve ever had and I had been, for the first and only time I was really frightened, and I lay that night in bed and I thought about my three kids, my husband, and I thought well this is it, is this going to be me, this will be me now because there is not a cure for lupus, so you just need to get your head round it, this is you and what are you going to do? Are you going to sit there and let lupus rule you or are you going to battle to have a life, and I took the battle to have a life, that’s a decision I’ve never ever regretted, but its actually facing up to the fact that you have this illness and that your life has changed and its acknowledging that change.

I mean it probably comes to different people in different ways, that for me it was a sleepless night in a hospital bed and then I started my own campaign to make sure that I could live with the lupus and that it would not rule my life or anyone elses. That was the most important that it wasn’t going to rule or ruin anybody elses life and I can honestly say it hasn’t and it didn’t, because I still do all the things I had planned to do before I was diagnosed, we still had all the years of camping and going to dances as we still do, so you learn to live with your illness, you don’t let it rule you.

I mean don’t get me wrong, there are days when you are in so much pain, there would be no dinner there for anybody coming in at night, because you’ve hardly been able to lift, hardly been able to get out your bed in the morning never mind come down stairs and start walking about. I mean it depends on just how severe your pain can be, but on the whole I can honestly say that, that night I faced up to it, but that was three years of my life I hadn’t given into it or anything but I never thought about it and that was when I started cooking batches, things like that.

A lot of the people who I have spoken to who have chronic pain have had almost an epiphanal moment where they’ve consciously decided this will not wreck my life, I am not going to sit around moping, I will do what I can. And I will enjoy what I’m doing.
Did you have a moment like that?

Yeah I did, I did. I definitely did. Because I’d had all the depression as well and, I don’t expect somebody who, you know, who had developed chronic pain last week to be able to treat, to deal with their pain in the way that I deal with mine. I’d be enormously impressed if they could. I would take my hat off to them.

But theres, theres an adaptation period which is, which is extremely psychologically painful as well as physically painful where it does feel as if your life is over. It literally feels like that. Because you can’t do anything without it hurting and because before then the things that you do didn’t hurt. That seems like just running into a dead end entirely and you can’t see a way out.

And you do go through of this “Why me? What did I do to deserve this happening to me?”. And in the end, that’s a pointless question because you can’t get an answer to it and it’s just, you know, lifes a bitch. And these things do happen to people, and awful things happen to all kinds of other people as well, they’re just differently awful. And, you know, you only, I started dropping into truisms but you only come this way once and you’re a long time dead.

And it is a waste of a potentially enjoyable life to spend the whole of the rest of your life in a deep depression about how awful it is for you having to be in pain all the time. You do have to deal with the pain on a daily and sort of second by second basis. What you don’t have to do is think that it’s awful.

And I think that gradually over time it’s taken, you know, a couple of years for me to kind of properly get my life back and I feel like now that I have got my life back and although it’s not how I’d like it to be and I feel like I’m suffering and there are real frustrations but I am living the life that, that I almost would have led before.

I still have pretty much enough of a social life and you know I can, you know I do get out and about and I’m studying. I’m doing something productive and everything, everything else in my life apart from the pain is good. Because I always see it as two different things that are going on.

Theres my pain which is causing me suffering but theres also the disability that goes with it. And they are like two different things and you can get round the disability to a certain extent because you can do things like drive, you can, I’ve got a disabled parking badge, I get these subsidised taxi journeys and that kind of thing and I’ve got my wheelchair.

So you can get round the fact that you are disabled. You can’t do everything that you would like to do but you can do most of it. But you can’t, I can’t do much about the pain at the moment. That’s just there but at least if I can tackle the disability side of it and I feel like I have.

And most of all it was the hardest part, but I accepted that I had this damn back, and that I would have it for the rest of my life but there was a life with back pain and once I’d accepted that I’d, I just got on with my life and I’ve got a different life now and I don’t know why I’m crying for now because I do have a good life.

But that was really hard for me because on the, they had psychologists there, or two or three psychologists, and although I cried a lot all through the course I hadn’t really said much about my job but to me in my heart that was all I wanted to do was to get back to my job and on the last day the psychologist, we all went in individually on the last day and he said to me you know ‘da di da di da. How have you found it and all that?’ And I said ‘Well, I didn’t answer a lot of your questions’ I said ‘because I want my job back and you can’t give it to me and… He said ‘Well, you’ve got to accept that, you know, you won’t go back to that job’ and something just clicked in my head and I thought you know ‘Yeah, you have got to accept it’ and I, don’t ask me why and when anyone ever says to me ‘What did you gain from pain management’ I always say ‘acceptance because that is, that is what I gained from, I mean obviously I gained a lot more than that but that acceptance is a turning point.

But I think the most, I suppose the biggest thing for me was in actually accepting the fact that I am going to have this pain, or this back problem, for the rest of my life and I think acceptance is the key to living with a pain problem. If you don’t accept it, boy oh boy you’re going to have big, you know, you’re going to be like, be in that NHS roundabout and go round and round and round and life will be the hamster in a wheel, you sort of, you know and you ain’t going to get anywhere.

Acceptance is the key, right, it’s the fact that I’ve got to accept, the fact that I’ve got a bald head, I’ve got to live with it. I’ve got to accept the fact that [name] got to, I have got a long-term back problem and, providing that I stretch and exercise daily, I pace myself, I self manage my problems, my back pain, to the best of my ability, I seem to have a really good quality of life.

One of the biggest problems that I had in coming to terms with my condition was that for several years people told me I would recover. So I didn’t then mentally put myself into the position of somebody who will have chronic pain. I always thought “Yes this hurts horribly at the moment, and it’s ruining my life and so I put my life on hold”.

And I think if I’d been told earlier “This is it now, this is the condition you’re going to live with” I would have come to terms with it earlier but people said “Oh no, about another 12 months and you’ll probably be alright”. So I think it was about three years in before it became clear, I think just to me.

I don’t think anybody said it to me. Before I realised that it was never going to be okay, it was never going to get better and, and at that point you can then deal with it and, and live within what remains to you of your life. You have to come to terms with it.

But no, it took me… I was quite, I wouldn’t say depressed but I was quite despairing I think for a while, thinking I don’t know if I can face this for the rest of my life feeling like this, day after day after day, week after week, month after month. And the more I read about it and the more information I got about it, I just, something just finally realised in my brain ‘Well, it’s not the worst thing in the world. It’s bad but it’s not the worst thing in the world.

I can manage it to a degree, once you get all the information about it. There are days where it is pretty hard to handle but there are other days where you can manage. I mean the pain’s still there but it’s manageable and I try now not to really think about how I’ll feel tomorrow or I won’t go there next week just in case I’ve got too much pain. I just try and kind of manage every day as it comes. It’s the only thing you can really do or you would go mad.

Its, I mean the way you’re talking it seems like you’ve realised that pain’s going to be part of your life?

Oh yeah.
How did you come to realise that?

When they first told me that there is no cure, they couldn’t cure it. Mostly, I think I learnt it with me eyes first off, because I went, it took eight years for the hospital to acknowledge that I had a problem with me eyes, they thought they cured it when they operated, but they hadn’t.

But in actual fact that was a bit of a godsend to me, ‘cos that helped me with me back, once I learnt to control me eyes. It took me over a year, eighteen months to control them, but once I’d controlled myself with me eyes, then I done the self same thing with me back virtually and it paid off.

How did you come to accept the pain?

I think I pretended to a lot before I did. I’m not somebody who shows how I feel about things very much. Most of my friends, I think that, I suppose I’m fairly strong character and they come to me with their problems and sometimes forget that I actually probably have more problems than they do. But that’s just the way I am.

I stick the veneer on first and then come to terms with it afterwards. And I suppose that’s a kind of way of coming to terms with it anyway, because the more you keep telling yourself something doesn’t matter, the less it matters. You can convince yourself of anything if you want to. And I guess I do, I’ve said it so many times that you get used to it. So I did get used to it. ‘Cos I didn’t, don’t want anything to beat me and this certainly isn’t going to. So you do, just, I suppose pretend first and then eventually you’ll be true.

But I would think, the greatest problem that I’ve had, and it’s not been the pain. And it’s not been learning to live with the pain. It’s been forgetting about the way I used to live. And just putting it completely out of my mind and starting on a clean sheet of paper. Because I just can’t do any of the things that I used to do.

You know, or any of the enjoyable things that I used to do. They’re way beyond my reach now. So I’ve really got to put them out of my mind and start afresh. And that was a major problem at the beginning with me. It took me two years, at least two years, to come to terms with that. Because I was always making a target of getting back to the way I was. It’s totally unrealistic. It’s never going to happen.

And the worst thing than not making a target is making a target that is totally unattainable. And that’s what I was doing for two years. And I was driving myself crazy. I must admit. I was getting angry with myself for not being able to do simple things. Because inside your head you would say “Oh I used to do that, I used to do the next thing. Can’t do that now”. You’ve just got to put that out of your head and start on a clean sheet of paper. Otherwise all you’re going to do is hold yourself back from progressing to any length whatsoever.

The only thing I would say to anybody that finds themselves in this state is quite simple, it really is. Forget what you used to do. Forget how life used to be. Plan for a new and different, and equally rewarding life. Because if you try and attain the old one and you have been told that it’s not possibly medically.

Then you’re going to be wasting a lot of time that you could put to some use, you know. Because I wasted two years at the start. And it’s the only thing in this life that you can’t replace, is time. Everything else is replaceable, everything.

All the pain and everything, you know, you can get all, you can get round everything, you know, but you really have to look at things from a completely different perspective and with a much more open view. Not a narrow view. You’ve got to be, at all times, you have got to be able to compromise. And that’s the only way to get by, being like this.

It’s… unless there is something to which you can see an end like now I’ve done the damage there is no end. The quicker you can come to terms with the fact that pain is going to be part of your life the quicker actually you can get on with it.

Don’t expect too much, but always look for that little bit more. I mean I can do most things so long as I don’t do them too long which is why we stop every 20 minutes/30 minutes just so I could move and then I’m okay, you know. If we were walking every 25/30 minutes we would stop and have a rest.

It’s just, just don’t do anything too long and you can get by. It isn’t the way I want live, it’s the way I’ve got to live now. I mean, nobody made me a horse breaker, I chose it. And but it’s a higher risk occupation, horses are a high-risk sport. I don’t believe in whinging about it. But its… if what we are doing is going to help anybody else, then great. But the important thing, well the most important thing looking back, is that, is the acceptance thing.
How did you come to that?

Well, like initially I refused to accept that I couldn’t get back to work. I mean I am not somebody who suffers illness and I have very rarely been ill and I have had, other accidents that have stopped me working for a while, but I always knew I would get back. And I’m not saying that I was kidding myself at the back of my mind I knew things weren’t quite the same this time.

And unfairly at the time I kept saying to the consultant ‘When do you think I can get back to work?’ because I, although I probably wouldn’t have admitted it, I think I did know then that things weren’t going to be the same. And in the end I said to him, you know ‘we are not going to get back to work are we you know and he said ‘Well, I don’t think so, I certainly wouldn’t advise it so… and that was him trying to be as positive as he could.

But when it comes to accepting it, nobody else can do it for you. You’ve got to do that yourself, you know. And when you have accepted it and its sunk in you have got to think ‘okay’ works out the question ‘Let’s have a look at the rest of it’ and the rest of it is to me is having as normal a life as possible.

I think it’s kind of changed me sort of, you can put it really into the negative and the positive and most people only ever see it as a negative. You know, I mean I had to leave a job which, which I really did love, you know I would still be in it now, I’d probably still be in it 10 and 15 years time had I still been able to continue in nursing. You know I’ve ended up in debt.

I’ve lost friends, but I have grown so much as a person. Like, you know I’ve really become to know so much more about me and you learn not to take the trivial little things for granted. And it is interesting you kind of, I guess you learn how the kind of support that you want so that you can therefore support other people when they need it.

I mean one of the best things really was that I came to faith and it’s something that I, if somebody had said to me this time last year or two years ago ‘You’d become a Christian. You’ll work for your church. I would have a laughed at them and said ‘No, I wouldn’t.

But I have and you know since all that’s happened, you know my depression has improved. I’ve accepted my back. I’ve accepted the fact that I have chronic pain. I mean I have bad days still where I get really fed up but I cope with it so much better. You know I’ve become more involved with supporting other people who have got back problems especially.

And I, you know, I just look back and think you know I would have missed out on so many opportunities, you know would I have still stayed the same workaholic that I was and you know because of all this I work part-time where I’ve been able to see my niece grow up, you know, fairly frequently and keep in touch, you know I have gotten closer to my family as a result of it.

You know, that’s something that nobody else can take away from me. You know, but it has been a struggle. It has, it’s been a really, really long journey and parts of it have been easy and parts of it have been really tough and I know that it’s going to continue like that. It’s not going to be perfect forever more.

But I suppose what I know now is that I can get through the tough times. You know I also have a good support network in situ and not, I’m not afraid to ask for help any more which was something that I was for a long time.

But generally I am, I’m a happier person as a result. Because being in the state of health that I’m in, it forces you to prioritise and to decide what it is you want to do, as I keep saying, within the limits that are imposed upon you.

So I’m quite, I’m focused, and you learn to take pleasure in very small things. I get terribly excited about conkers. I walk out to the bus in the morning and a conker will fall on the ground and they’re just such beautiful colours.

So I think you learn to take your pleasures in a, in a narrower sphere. And what is interesting is that I’ve recently started working on a Union basis, with somebody I worked with in [past home town] many years ago, before I had the accident, and he actually used to take me out on training VAT visits when he was the trainer and I was the trainee.

And I said to him, I think possibly some time in the last 12 months. I said “Am I’ You’re the only person I know who’s worked with me kind of before and after. What are the differences?” And he said “The only thing is you seem a lot happier”. He said “you always seemed vaguely miserable before and now you’re happier”. And I think basically now I am happy with my life. I’m not happy with the fact that I’m in chronic pain and I would give it up tomorrow, you know, if I could be cured I would, I would take it with open arms. But I have learnt to be happy within my limitations, and before I wasn’t.

So I don’t know where I would be psychologically at the age of 41 had it not happened to me when I was 29. I have no way of knowing but I doubt I would be as, as sort of sorted and stable as I am now.