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I have been unwell since 2006. I was bed bound for months at a time and eventually in 2010 became completely bed bound.

Life is very challenging. I need care constantly and cannot do simple tasks such as washing or toileting without help.

I cannot sit up for more than a minute and spend virtually all day and night laying down.

It has limited my life in every way and every thing.

The exhaustion and weakness make the little things, like texting a friend, a challenge.

I have to spend a large portion of my day resting and doing nothing if I want to get to the end of a day without becoming very feverish, which leads to me feeling like I am ‘not really here’.

The M.E. Trust support has enabled me to have respite care at Burrswood – and it has been a lifeline. A chance to leave the pressures and burdens of coping with the illness at home and breathe a bit more freely. Having specialist medical input and care has helped improve my quality of life. I have had a lot of help put into place that I didn’t even realise I needed.

The respite care has not only helped me physically but it really helped me emotionally. It strengthened me and equipped me in a new way for my challenges at home.

Kareen’s story of hope after 18 years of struggle

“I had been bedbound at home with ME/CFS for 18 years. After pleading with my doctor for hospital care, I was told there was nothing available to help me. Then a friend gave me a magazine article about Hannah Clifton and her recovery from ME. I immediately thought, ‘I want that!’

My husband hired a car that would fit a mattress in the back and we drove the long 7-hour journey to Burrswood Hospital.

Meeting Hannah was an emotional experience for me. She came to my room just after I’d managed to walk along the corridor for the first time – a huge milestone for me. We cried tears of joy in each others arms. Hannah’s story has continued to inspire me and she has kept in touch and encouraged me. Dr Paul Worthley has always been helpful, taking time to listen and understand.

Miraculously, the NHS approved a 5 week stay in Burrswood!

During my stay I also rediscovered my spiritual side. I found a renewed hope and a desire for life which had been ebbing away in all those years of suffering. I went on to have the best summer ever and enjoyed outings for the first time in many years.

It is still a challenging journey, but my mindset has changed and I feel a real sense of possibility, hope and, faith. I continue to spend a lot the time in bed, but my quality of life and my faith (often with a struggle) have strengthened enormously.

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…

Jessica was diagnosed with ME at the age of 14. She has endured pain, exhaustion, muscle and joint pain, poor concentration and headaches. She says, ‘I have spent almost a decade in bed, there have been times when I couldn’t move…’ For two years she had to be fed through a tube and for 18 months she was unable to speak. She was so sensitive to light and noise that she had to wear sunglasses and ear protectors.

She says ‘ I’ve always believed I will get better and be able to walk again but I couldn’t imagine the feeling of walking or remember what it was like to move. Walking was a dream come true. As I stood up I realised I had grown by four inches.’

Jessica is a former netball captain and was a happy active teenager before she became ill. She says, ‘Since that moment my life has been an emotional rollercoaster for me and my family. It was a shock for everyone, I had gone from being an outgoing person to not being able to get out of bed’.

Jessica is hopeful that she will continue to improve. ‘I’ve missed out on all my teenage years, that’s the hard part of having this illness, but with this breakthrough, I’m hopeful that one day I’ll lead a normal life again.’

Jessica was fortunate to access life transforming care and support at Burrswood, and The ME Trust was privileged to support her. She is now home again, living with her parents and sister.

‘I heard of many miracle stories whereby people walk again, but I never thought it would happen it me. I’m so thankful for the support I have had, and proud of myself for all the hard work I put in to make my dream a reality.’

Jessica says The ME Trust is about giving people like her the opportunity to change their lives. ‘I stood up for the first time in 8 years with The M.E. Trust’s help. Thank you so much.’