Carlene’s story

When I was referred for pain management, I had no idea what I was going to do or what was expected of me. I was looking forward to it hoping I could get some benefit.

Before I had pain management training, most of the time I did not even go outside, regardless of what the day was like. I did not see anybody. If I went shopping often it was with someone else. I did not feel confident. I had a lot of anxiety. I became quite agoraphobic - not really wanting to be in front of people. I did not feel that I had anything to give. I had this attitude “I'll just get in and do this or that”, and I could not do it; or if I did do something I would push myself, because I thought, no pain - no gain. Then I would flare up and be on the bed and then get really down because I thought I was just going round in circles of pain, limitation, depression, all of these things. I kept going round and round.

I did not feel inside myself that I could be happy. I couldn't lift a glass to my mouth. I couldn't do the ordinary things. Before I would push myself and get to the pain and then flare up. Now I measure things out. Even in my exercise - rather than pushing myself I measure myself out. If I go for a walk then I factor in that I have got to get back. I only walk as far as I can. I am not totally pain free, but I am so much less in pain, that I can be happy. There was a time I would not sit at a coffee shop in the street, because I felt that all I could express on my face was misery and I did not want to be in public like that.

I felt understood by Coralie Wales. It was really refreshing for me. She was supportive without being restrictive, and really encouraging. It was not just the physical thing either. It was like I went into a dark place and I was cut off from the world and I was really depressed. I had been incredibly depressed and I wasn't going to go on anti-depressants. It was after the first interview with her that I really sensed my power base. Saying what I can and can't do. It was OK to ask for help.

I started to get the possibility of getting a lot of what I wanted back. You have to work on it, you have to do things to get it back. You can't get something out of nothing, you have to put energy into something and that was something that I made sure I did do. Where attention goes, energy flows.

I thought the education session was fantastic. The thing that stands out in my mind even today was the drawing that Coralie did, the brain and the nervous system and how it sets down extra receptors to receive signals. It was a new way of thinking. I had been taught that I did not have to be a victim. That I could actually have an effect on my own nervous system.

Education is so important because if you can actually give somebody an understanding, you immediately cut their anxiety about what the picture is and empower them to know that they can get better from where they are.

I am sure that most of the people that have done that training would come out with this result. Education is the only springboard for people to actually grow and change. Otherwise they are just in the dark.

My life has changed absolutely! For the better. My boys would say that I am less grumpy now, because I can do more. I have more independence and I really enjoy the satisfaction of working, whether for other people or myself. My aim is strength and endurance. I can do most things, maybe hanging out the clothes is still a bother but that's OK. I know my limitations now.

I started to understand that if I worked underneath my flare up, I could get stronger, so now I actually feel sore, but not pain. For instance if you do exercise and then later, you go for a big bush walk or help someone move furniture, you will be sore next day, but that's OK, it’s different to pain. I get sore more so now than flare up. I am sore today but I am not in pain, I am getting fewer flare-ups. It’s more like I have really been working hard. It's a big difference, but also a sense of achievement.

I think it’s really important to go back to work. It does not matter if it’s not the same work. Sometimes it is better if it’s not because you don't get into the habits that you had in the job that you did before. That's why I'm glad that I started in my new work, because it was something totally different. Admittedly the people are very open to me using pain strategies. It also gave me a variety of movement.

I believe that art can be useful in chronic pain rehabilitation. By "art" I mean anything creative. I found that in the process of being creative you don't have pain. It’s like an active meditation. There is a disassociation with the body. It is a distraction. You still might be in pain but it’s in a different space.

But, people who have chronic pain tend to over-function. If you are being creative, it’s like suspended animation. You can get lost and overdo it. You have to have self-discipline, which can be achieved through gradual education. What you can do and how long you can do it. You just have to be open to thinking in a different way.

I have been really empowered by the exercise of determining standards and boundaries, and writing them out.

Another big turning point for me was doing knitting, I have been knitting for a long time, my grandmother taught me to knit, so it has great significance for me. I had not knitted for years. At first it was hard to get working, to get the rhythm. When I first started knitting I could not touch my little finger with my thumb on my left hand and now I can do that quite easily.

While I did this, I also did meditation. I was being creative while doing exercise (knitting) and a meditation. I did this for probably four weeks fairly solidly - I did not go anywhere without it. Any spare moment I had, I had to knit. It was very therapeutic and I am sure if I had not have done that I would not be working in sterilisation at the dental practice now. It gave me the strength, I did not have any power there, and just doing that week by week gave me the power. It's been hard work.

Once you start being able to do things with less pain it’s like a snowball; you start to be able to do more and more - with less pain. You have to want to have a normal life. Even if you end up still having some limitation that doesn't matter - its actually the fact that you have got as much of yourself back as you had before.

Before I was at the beginning of the tunnel, now I can see the light at the end of it. Now I am coming into the light. I can see that all the things I have gone through are actually skills now for me to be so much more available to help other people. I understand about chronic pain. I can explain that to people and I can give them a bit of hope.