Transcript of VPS Podcast 11 - Supporting people living with lichen planus: a presentation given by Bridie Nelson

This is a transcript of VPS Podcast 11, which is an audio recording of a presentation given by Bridie Nelson at the VPS Super Workshop on 9 May 2015. You can listen to the podcast at Podcast 11 - Supporting people living with lichen planus: a presentation given by Bridie Nelson

 

Thanks for asking me here today, Kay, David [Kay Thomas and David Nunns of the VPS]. I’m Bridie Nelson, and I have erosive lichen planus of the vulva and the mouth. I’ve had it since 2003, so I’ve lived with it for quite some time now, and… it gets better! Living with a condition such as erosive lichen planus, it does get better, you manage to cope, you find your coping strategies. But sometimes that takes a long time, and I think you just have to go with it, and try a lot of things, and find what works for you, because we’re all so different. I have a little toolkit. Aqueous cream is the one thing that I would not live without, and I use it pretty much every day. Dermovate is another one that I use quite often… So yes, you’re just careful, you find out what works for you, and you stick with it, and eventually life is OK again, it gets better.

So I hope that you take something positive away. I don’t know where you all are now. I don’t know whether any of you have got lichen planus or not, or lichen sclerosus, which is also pretty similar. I’ve also got vulvodynia, and a few other things, so I’m no stranger to pain everyday. But you can get beyond the pain. It takes a little bit of effort, and you have to watch the thoughts that come into your head. Because we’ve all got that negative voice, haven’t we? We’ve got that voice inside our head every day that says you’re not good enough, you’re not feminine enough any more, you’re not really a good enough partner because you’ve got these conditions that you can’t have sex and, you know, even touching is – you may not want to go through the process because you’re frightened of where it’s going to lead. So we’ve all got that voice. I mean, I’ve got that voice. It says: ‘Bridie, you’re fat. You’re really fat. And you’re ugly too, actually. And you’re pretty stupid’, because I haven’t got a university degree, so I judge myself on that, you see. And I’ve got a choice at that point. I can listen to it and think: ‘I really am fat! I really am not very pretty, am I? And I’m not very feminine, either, because, you know, I’m pretty much scarred up down there.’

Or I can think: ‘Well, OK, I’m not going to believe that. I’m going to believe something different. I’m going to be putting the things into my life that are going to make me feel good.’ So, pretty much, that’s what I do every day. I wake up and I say, ‘I’ve got a choice today. What would I choose? How would I choose to feel today?’ It’s all about choice, and that puts you back in the driving seat. Because otherwise, you’re just going along with that little voice in your head that’s making you feel so bad every day, like you can’t wear the clothes you want to wear, because you can’t wear tight trousers, perhaps, or you can’t wear tights. I went through years of not being able to wear tights or trousers. I couldn’t wear knickers either, actually, because the pain was too much. But that has got better, I have to say.

So yes, life’s a bit like a sausage… Has anybody heard of Richard Wilkins and Liz Ivory: Broadband Consciousness? No? They have a really great way of explaining the power of choice and they say that life is like a sausage machine, and it is, actually. So, this is the sausage machine, and the ingredients you put in are your thoughts, and what comes back out again are your feelings, right? So, if you wanted to make a juicy fat beef sausage - sorry about this, but we’ll say sausages, what would you put in to get that? Would you put in fat, gristle, all of the rubbish? Or would you put in the good stuff, the premium beef? Turn the machine’s wheel, and out would come a beautiful sausage, wouldn’t it?

Life’s like that. If you continue to put rubbish thoughts in, you’re not going to have great feelings, and so that’s where the choice comes in, isn’t it – what would you choose? If you could choose your thoughts and feelings, what would they be? Would you wake up and think: ‘I want to have a really bad day today. I want to feel really angry, and frustrated, and not good enough, and, you know… ugh! I just want to stay in bed!’ Actually, I did have that point in my life when it was early on, my condition wasn’t managed very well, and I didn’t know anything about this ‘choice’ stuff. I remember sitting on the edge of the bed one day, and I thought: ‘If this is all life has got to offer me now, I don’t want to be alive. I’d rather be dead.’ And I’m sure I’m not the only person to have reached that point in their life when it’s just all too overwhelming, and all you can see is a long stretch of pain in front of you, because that’s all I could see at that time. I had no idea that ten years later – twelve years, actually – I’d be here feeling great! And I have pain every day. Every single day. Sitting down is painful. Driving in the car is painful. I lost my job because I couldn’t sit down to do the job, you know, so there’s also the feelings of isolation that can come in. I understand all this. But it is all about choice. If you could choose, how would you feel? What would you do, and how would you feel? Would you put in a lot of self-care? Would you be kinder to yourself? We all know it’s about self-care and kindness, but how do you put it into action? Well, you choose. You choose not to listen to that negative voice in your head and you choose to make things better for yourself. So when people put demands on you, you ask yourself the question: what would I choose? Would I choose to make myself worse, because I have to do things for other people all the time? Or would I just once in a while say: ‘No, actually, I’m going to take time out for myself today, and I’m going to be gentle on myself’, and maybe have a day at home, a day of rest, maybe do your nails, do something that makes you feel good and feminine.

And maybe - here’s a really great tip, something that I did very early on, actually, I was so… fed up, let’s say, with not being able to wear nice clothes, and not feeling good about how I looked. I went to John Lewis and I booked an hour’s session with a consultant – it’s all free of charge – and I said: ‘Look, I can’t wear trousers, and I’m having great difficulty with everything else as well, what can I do?’ And they brought out all of the clothes, and I tried everything on, and it was great! I didn’t buy all of the clothes, but I bought one or two things, and they made me feel good, it made me feel in control again, a little bit. That’s what it’s about, isn’t it? Because you feel out of control when you’re in pain and you can’t do much about it… not physically, anyway. So that’s a great thing to do if you’re feeling a bit – unfeminine, if you’re not feeling great about your body image, or your image at all. Try it! It’s free! It’s great. And it’s a little treat, because we all deserve to put treats into our lives.

It’s not just the women that have these thoughts, it’s men too… The partners. They might be thinking things like: ‘I’m not good enough because I can’t fix things. I can’t support my wife properly. I don’t know what to do to help her.’ So, you know, that’s the self-talk that’s going in for you. If you could choose, what would you choose? What would you choose to do to help your partners? It’s really quite simple. Very easy. First thing in the morning, if you can’t feel that wooden box that’s your coffin, you’ve got another day to be alive, and another day to appreciate the little things. I know that you’re probably thinking: ‘She’s just talking!’ I actually live this, and it has made an incredible difference to me. The last three years have been the best three years of my life with pain. I don’t think many people can say that, can they?

Anyway, I’m going to leave it there. There’s not much else to add, except that if you can take one thing away, when you wake up in the mornings and you’re in pain, just ask yourself the question: if I could choose, how would I choose to feel? And then, ignore the thoughts that are telling you otherwise and put some good stuff into your life. It doesn’t take much, really.

So, good luck with your journey! In twelve years’ time I hope that all of you are feeling as good as I do right now!