Anne’s journey to recovery from long-term severe ME
“I have been very fortunate to stay at Burrswood hospital twice, and both occasions marked a significant turning point for me. In June 2009, I stayed four weeks after being housebound with severe ME for twelve years (I was functioning at about 20%). I couldn’t walk more than a few metres, and even occasional short outings in the car would set me back so much they really weren’t worth it. I spent my days alternating between my armchair and my bed, and struggled to manage a shower once a week, even with help from the carers who came in three times a day.
My first trip to Burrswood felt very daunting, but once there I felt surrounded by love and care as I soaked up the peace and beauty of the place. Within the first few days I’d received more medical attention than over previous years at home with ME, as I saw doctors, nurses, physiotherapists, chaplains and volunteer visitors.
One highlight of my stay was a visit from Hannah Clifton from The M.E. Trust. I was really struck by her story of recovering from very severe ME. She made me feel I could do it too, which was remarkably encouraging and empowering. After my stay I was gradually able to start going out more and more, and using NLP techniques I became a lot better. For 18 months I was functioning at 50-60% and able to walk half a mile, follow courses at a local college, cook, visit friends and do so many things I hadn’t done for a very long time.
Unfortunately in autumn 2011 a few circumstances conspired to take me off track, and I went slowly down hill. It was a terrible time as I couldn’t face the idea of getting ill again. I eventually got in touch with Hannah who was so helpful and understanding, and she encouraged me to come back to Burrswood for a second stay. By the time I got there in June 2012, I was feeling really miserable and desperate to halt the vicious cycle of anxiety, poor sleep and worsening symptoms.
I’d kept in touch with Dr Paul Worthley from my first visit, so I felt he knew me and my history. He came to see me five days a week during my second stay, and listened to me with such warmth and compassion. I felt he understood where I was coming from and so I could trust his advice.
Sometimes there weren’t easy answers, just a need to trust and wait. Paul and the other staff at Burrswood helped me to relax enough to do that through their kindness and acceptance. After many years of illness, I realised I needed emotional healing too before further progress could be made in getting back to fitness.
Hannah visited me during my second stay and she really helped me to see the bigger picture and learn to trust and hope again. She really is an inspiration and so passionate about the work she does to help others.
I remember talking to one of the chaplains in floods of tears because I didn’t know whether my precious time there would be enough to turn the corner. Fortunately it was. The chaplain helped me see it didn’t all have to happen during my stay at Burrswood, but the seeds that were being planted through my discussions would grow and develop in the months ahead, and so it proved. I gradually stabilised over the summer and started to feel much happier. A year later, when I felt the time was right, I did the Lightning Process. I made progress quickly. I was soon climbing the Malverns!
Over the last year I have been functioning at about 70-80% and am so thankful for my recovery. I have been travelling abroad by train, learning new skills, swimming and climbing mountains! I’m now gradually getting ready to start earning a living for the first time in 18 years as I continue to get stronger.
Burrswood’s whole person, ‘body, mind and spirit’ approach is immensely valuable for any chronic medical condition, but especially for people with ME or other conditions where fatigue is a major part and where understanding and support for the condition are sometimes in very short supply.
I had to wait a long time before I started on my recovery journey, but that journey began at Burrswood, and I hope others will have the opportunity to benefit from their wonderful, individually focused care and support, too. I’m really grateful to have benefited from Burrswood’s ‘Access to Care’ fund, as otherwise the fees would have been prohibitive for me. Now I’m donating my old electric wheelchair to Burrswood; I don’t need it anymore, and I hope it will help someone else’s world to start to grow a little bigger if they can just get out of the door…