Anna's Story
"Looking back, I can see that I have made progress in leaps and bounds."
When I was 18 I was diagnosed with Hodgkin's Lymphoma Stage 2. After radiation treatment I got the all clear, but about 9 months later I started to get pain all over my body; my legs became weak and stopped supporting me and I was always exhausted. I started a 3-year fight with my doctors who seemed to believe it was all in my head before eventually diagnosing me with chronic fatigue syndrome. I had hydrotherapy and physiotherapy treatments and after sometime using a walking frame I was finally able to walk again unassisted.
As I recovered, my neighbour (who was an art teacher) started giving me art lessons. I really enjoyed them and so enrolling on a two-year BTEC in fine art. Life started getting back on track, but I knew I was living a boom and bust cycle. I'd block out my pain, go for it and then be bed bound for weeks, or even months. Luckily my tutors were very understanding and I eventually passed my BTEC with merit
Buoyed by my success I started a ceramics degree at Loughborough University. Sadly, at the end of the first year I suffered kidney failure caused by a radiation burn. Thankfully, my kidney recovered but I was left weak and with even more pain. The pain never went away; it was there when I woke up and increased in intensity throughout the day. I had to sleep every afternoon and more and more I needed to rely on others to help me do things.
I attempted to start my second year twice. But each time it became quickly apparent that I was unable to keep up either physically or mentally. I became more depressed. I moved to London but that just made me more isolated from my family and friends. The anxiety, which had been around since my cancer, became extreme. I had panic attacks and struggled to leave the house even with someone else. I was also getting weaker: my muscles kept cramping and going into spasm; I kept dropping things or falling. Things were getting really tough.
Then my doctor referred me to the pain clinic at St Thomas's, where I was helped with my medication and was seen by a pain psychologist. This resulted in a referral to the Bath Centre for Pain Services. It was during my initial assessment that someone mentioned “fibromyalgia”, which started to help me make sense of my symptoms. As a result of the assessment I was offered a place on a 3 week residential pain management programme.
Being on programme
I went to Bath feeling scared; I was outside of my comfort zone, removed from everything I had come to rely on. On the first day we were introduced to the team and assigned a key worker. The programme was group based and we worked as a group at all times; it was exciting and reassuring to meet other people in the same situation as myself. To begin with it was hard to talk about what I was going through, but as the days went by I become less worried about speaking out and clarifying things on my mind. My group was full of lovely people. We bonded well and supported each other. I am still in contact with some of them.
During sessions we covered a variety of subjects that wove together to help us manage our lives with pain more successfully. Regular stretching has become a very important part of my daily routine, building up my muscles and improving my balance. Psychology sessions looked at the way we thought and at how feelings like depression need not be “in the driving seat” of why we do things. We learnt to notice the difference between thoughts, feelings, body sensations and actions so it was easier to see what was going on and to make decisions. Daily mindfulness training helped us focus on moment-to-moment awareness, rather than getting caught up with how we used to be, or worrying about what might be in the future. Mindfulness has helped me to be less stressed and even helped me improve my sleep as now I find it easier to drop off without getting frustrated and up tight.
The staff at Bath also helped me define my values and then to set achievable goals in these directions. Because of all of this I felt my life had more balance: I felt more whole myself and started to learn who I was again.
One year on
Looking back I can see I have made progress in leaps and bounds. I attend yoga regularly and use the gym once a week. I have started seeing my friends again, I'm going out more and I'm more able to enjoy things. I still find it overwhelming at times but use mindfulness to stay aware and avoid gut reactions. My husband and I have been able to strengthen our relationship - as it had taken some knocks as a result of the things I did when I was full of pain and frustration. I'm more open about what I feel and remember to tell him and other people what's going on when they ask not to just say “I'm fine”! I've also established some boundaries with the people around me; I'm not allowing myself to be walked over any more.
While at Bath I was encouraged to expand my love of art into a business rather than just my emotional outlet. I now have my own website, an exhibition of my work at Gallery 43 in 2008, my artwork in a local restaurant and a picture in an upcoming art exhibition run by the British Pain Society.
I still have times when I “lose it” but I'm more aware of the situation and can see when I am going off track. I still have feelings of anxiety and depression but am better able to understand and deal with those situations more clearly. I still have setbacks, large and small, but again I have been able to learn from these experiences by looking back, seeing what went wrong, and seeing if I can deal with them in a better way next time.
Overall this has been a genuinely life changing experience and I am so pleased to have had this opportunity. It is not easy – you have to be committed and it is hard work. There are points where it got me down and, of course, it has not made my pain go away (but I knew it was never going to). That said it has changed me and the way I look at my pain. Pain no longer controls my life: I do! It has been worth every tear; every bit of extra pain because it works and it has allowed me to get my life back.