Tom’s Story

Tom and Lily the dog

Tom is 18 years old and pictured enjoying a first wheelchair outing with Lilly his dog.

My symptoms were numerous & debilitating; including severe headaches, sensitivity to light & noise, impaired cognitive function, paralysis in 3 limbs, and severe gastrointestinal problems. I had to be tube fed. At my worst, I had to be turned in bed. I would sometimes suffer paralysis from the neck down & be unable to speak for 4 – 6 hours. My Mum gave up working to become my full time carer.

After I had been in hospital for 12 months my mum contacted The ME Trust. We were desperate to find specialist help. Dr Worthley came to see me in hospital. He is so caring, kind & compassionate & the major benefit, is that he understands, as much as he can, about M.E.

Dr Worthley attended an MDT [multi-disciplinary team] meeting at the hospital & he was able to educate the hospital doctors & nurses about caring for someone with M.E. Then things started to change!

The difference was amazing. Dr Worthley and Sue, my lovely physiotherapist, gave regular input and my health began to stabilise and was delighted to be able to return home.

The M.E. Trust are now part of my recovery & I am so grateful. Dr Worthley & Sue visit me on a monthly basis. They go at my pace & do not put me under any pressure. They are both so supportive & understanding, not just to me, but to my Mum as well. Dr Worthley communicates with my G.P. my O.T. & my dietitian. My Mum speaks with Dr Worthley & Sue in between visits, about any progress or any problems, which gives us peace of mind. I still need care most of the time. I need help to transfer from bed to wheelchair, with washing, and medications & am tube fed. I’m delighted that my cognitive function is back. I am getting stronger every day and have the use of my arm back. Life is so much better than it was & I am so grateful for that.

I cannot thank The ME Trust enough. The support, and loving care has been absolutely brilliant.