Claire's Story

This is Claire's story. Claire sadly passed away in May 2010 from an illness unrelated to her chronic pain condition. We have used Claire's story with the kind permission of her mum who hopes that it will inspire others, and as a tribute to Claire's determination.

I was fifteen when pain first started around my lower back and kidneys. I had lots of different scans, x-rays and blood tests to check my kidney function and both my G.P and I were puzzled and relieved when tests confirmed that my kidneys were fine. Although the pain was quite bad, especially if someone touched my lower back, I tried to push the pain to the back of my mind.

Not long after I turned nineteen the pain got a lot worse. I had a job that I loved; working with people with learning disabilities, but the pain became unbearable and spread all over my body especially to my neck, back and legs. I was also exhausted no matter how much sleep I got and I had to keep getting signed off work. My G.P tested for things like MS, Lupus and Arthritis but the results came back normal. A little while later I was medically discharged from my job which I found devastating. Eventually the pain, muscle weakness and exhaustion pushed me to the point where I couldn't even get from my bedroom to my bathroom so I was admitted to my local hospital.

While in hospital I was diagnosed with Fibromyalgia. I was put on an elderly persons ward for two months. I had physiotherapy everyday and my mobility improved slightly. When the time came to go home, I was promised a community physiotherapist who would start work with me immediately. However, due to a mix up, it didn't happen and the progress I'd made was lost. Again, I ended up not being able to get out of bed to do anything, and found it humiliating having carers doing very personal things for me. After only a couple of months I was readmitted to hospital for six weeks. This time, when I was discharged, I was re-housed on the nineteenth floor of a block of flats. I felt like there wasn't any hope of getting better. It felt like my G.P, social worker and all other professionals had given up on me too. I became very depressed and worried that the things I'd worked really hard to get, like my job, were lost forever.

When I'd been bed-bound for about eighteen months, my mum emailed one of my local MP's; he was disgusted that I'd been left to rot in bed. He spoke with the local primary care trust and persuaded them to fund further treatment. He told me about the Pain Management Unit in Bath and that it was the only place in the UK that could help me. After a couple of assessments I was offered the chance to go in for four weeks of individual treatment.

I will never forget that first day; I'd been lying down for nearly two years and was hoisted into a wheelchair. It was agony. After I'd calmed down the psychologist talked with me about whether I could cope with the pain and whether the treatment was worth it. That night I sat and had a really hard think about what I wanted to do: would I try as hard as I could or should I just call it a day? As soon as the thought of giving up and going home entered my mind, something clicked in my mind and I realised that I was very lucky to have this chance and promised myself that I was going to put all my energy into trying to get better. The whole team were fantastic, and the mix of physiotherapy and psychology meant that by the end of the four weeks I was spending most of my day in my wheelchair rather than in bed. I was also going out every day for the first time in years and taking less medication. My happiest memory was going to the shops with a nurse and getting caught in a downpour. Rather than hating the rain, I was exhilarated to feel the rain on my skin for the first time in years.

Before leaving, I was invited to come back on a young adults programme as long as I could reach some targets around independence. I was given some exercises and a goal schedule and went back home to work hard on things like personal care. I also started going to a neuro-gym at my local hospital where I was taught how to stand again and about a month before I went back to Bath I took my first steps with my best friend at my side cheering me on: it was the best day of my life!

Soon it was time to go back to Bath for the young adults programme. There was a lot more to do every day; along with physiotherapy and psychology there was mindfulness and occupational therapy. We also went to the gym a couple of times a week. Amongst other things we learnt how to be consistent in our day to day activities rather than falling into a “boom and bust” pattern. I was very tired but knew it would be worth it. When I started the programme I could walk only a very short distance with a Zimmer frame but by the end of the programme I was walking a lot further with crutches instead of the frame. I was also transferring myself and for the first time in years I was independent again!

As I write this, it has been a year since the programme and now I'm walking without any aids for most of the time, I only use my wheelchair for long distances. I'm living in my new flat, independently, and I don't have to rely on carers anymore. Earlier this year I flew out to Spain to see my mum and as the plane took off I had to keep pinching myself because I couldn't quite believe I was flying on my own. There are so many other things I want to do, things that when I was bed-bound I thought I'd never be able to do. Now that I've been given a second chance I am determined to reach those goals. First among them is doing a psychology degree.

If it wasn't for the Pain Management Unit, I truly believe that I would still be stuck in bed. I would say to anyone who was thinking about being referred that yes it is hard work, but the effects the treatment have are amazing and are well worth the effort. I've accepted that I'll always be in pain, and I've accepted that I won't let the pain stop me from doing what I want to do: now I can get on with my life. Of course some days are harder than others and sometimes the thought of being in pain forever is daunting. But knowing that the team is only a phone call away is reassuring and if you're having a problem you can always talk to them about it, even if your treatment has finished. Going to the Pain Management Unit was the best thing I ever did and I would recommend it to anyone with a chronic pain condition that has taken over their life.

Claire - February 2010.