Getting the best out of life

My name is Anna and I am now 31 years old. I was 18 when I was diagnosed with Hodgkin’s Lymphoma Stage 2. I received radiation treatment and about 9 months after getting the all clear I started to get pain all over my body, my legs stopped supporting me, I was very weak and exhausted. After a 3-year fight with my doctors who believed it was all in my head I was diagnosed with having chronic fatigue syndrome.

During these years I had hydrotherapy and physiotherapy and after a period of using a walking frame I was able to walk again unassisted. My neighbour who was an art teacher started giving me lessons. I really enjoyed it and decided to apply for an art course. I was accepted on to a two-year BTEC in fine art.

I thoroughly enjoyed this time in my life although I was living in a classic “boom and bust” cycle of just blocking out my body and “going for it” until completely spent, then being bed bound for weeks, sometimes months. My tutors were very understanding and I left with a BTEC in fine art at a merit level.

I decided to go on to do a degree; I was accepted on to the Ceramics course at Loughborough University. At the end of the first year I suffered from kidney failure caused by a radiation burn in the left urethra tube. Thankfully, when drained, my kidney was able to function again but it left me weak and in worse pain. The pain never went away; it was there when I woke up and increased in intensity throughout the day. I was sleeping every afternoon and having to rely on the others in my house to do or help me with most things.

I attempted to start my second year twice. Each time it was clear within a couple of weeks that I was unable to keep up physically and mentally, so I decided it would be best if I withdrew from the course. My depression grew worse. My body was so weak that I was unable to get out unassisted, which frustrated me further.

I moved to London and found myself becoming isolated from my family, friends and the people around me. The anxiety that I had had since my cancer became extreme. I had panic attacks and found going out even with some one else very hard. Using my muscles caused them to cramp and spasm; often they gave out on me causing me to drop things or fall.

My doctor referred me to the pain clinic at St Thomas’s Hospital, where I was helped with medication and by seeing a pain psychologist. I was then referred to the Bath Centre for Pain Services at the Royal National Hospital for Rheumatic Diseases in Bath. It was at my initial assessment there that I was given a diagnosis of fibromyalgia, which made sense of my symptoms.

Pain Management

I went to Bath feeling scared; I was outside 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 who we would have weekly sessions with to talk through stuff we were learning and any problems.

We worked as a group at all times; it was exciting and reassuring to meet other people in the same situation as myself. It was initially 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 in my mind. My group was full of lovely people. We bonded well and supported each other outside of the course. I am still in contact with at least two of them.

We covered a variety of subjects that wove together to help us manage pain and improve life, including daily stretch and exercise. 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 pain avoidance and how a state of mind like depression need not be “in the driving seat”. We learnt to notice the difference between thoughts, feelings and body sensations so it was easier to see clearly what was going on and to make decisions.

Daily mindfulness training helped us focus on what was happening now, rather than getting caught up with how we used to be, or worrying about what might be in the future. Simply put, mindfulness is moment-to-moment awareness. It has helped me to get less stressed in situations and even enjoy them. It has also helped me sleep; I am in more pain by the time I go to bed and find it hard to drop off without getting frustrated and up tight. The more I practise mindfulness the easier and quicker I find it to fall asleep.

The staff at Bath helped me define my values and then to set achievable goals in these areas. Because of this my life has balance, I feel more whole in myself and have learnt who I am again. It is good to realise that just because you can’t achieve a particular goal, it doesn’t have to hold you back in life.

One year on

I have made progress in leaps and bounds (although I do not always see it). I attend yoga regularly and use the gym once a week. I still find parts of the programme hard to incorporate into my life. I still have a lot of anxiety and depression but I am able to understand more and see situations more clearly. I can look back on situations, see how I may have been able to deal with them in a better way and learn for next time.

Over the year I have had setbacks, large and small, but I have been able to learn from the things I have been doing. Every time a new situation comes up I am more confident about how I approach it or deal with it. I still have times when I “lose it” but I’m able to look at the situation a lot quicker and see when I am going off track. My husband has appreciated this and our relationship has started to develop again. I’m more open about what I feel and remember to tell the people that matter when they ask, not to just gloss over this.

I have started seeing my friends again and make more of an effort to keep in touch. I’m going out more and I’m able to enjoy things outside of the world of pain. I still find it overwhelming at times but use the mindfulness to stay aware, remain relaxed and avoid gut reactions. I’ve set up boundaries; I’m not allowing myself to be walked over any more. I’m more confident and at ease with myself than I have been for a long time.

Exhibiting and selling

While at Bath I was encouraged to expand my art into a business rather than just my emotional outlet. I have had an exhibition of my paintings in “Gallery 43” in Chelmsford and I had a picture accepted into the art exhibition run by the British Pain Society at their annual scientific conference in London. I also have my artwork in a local restaurant and now have my own website: www.bubblesocks.com

Overall this has been a genuinely life changing experience and I am pleased to have had this opportunity. It’s not easy – you have to be committed; it has not made my pain go away; you have to work; it does get you down – but it has changed me and the way I look at my pain. Pain no longer controls my life: I do again! It’s worth every tear; every bit of extra pain because it works long term.

Further information

The Bath Centre for Pain Services was established in 1994 to help people cope with the effects of living for a long time with chronic pain. It runs a variety of programmes to meet the different needs of people from the age of 11 years, to old age. Details of the programmes can be found on the website http://www.bathcentreforpainservices.nhs.uk, or you can call them on 01225 473427 to find out if what they offer would be suitable for your needs.

Pain management programmes for adults:Information for patients is a useful booklet available from The British Pain Society, 3rd Floor Churchill House, 35 Red Lion Square, London WC1R 4SG, Tel 020 7269 7840, http//www.britishpainsociety.org
http://www.britishpainsociety.org/patient_publications.htm - direct link to The British Pain Society's most recent publications.