Oh! Thank you one and all! You have truly helped me to feel more positive! I felt a bit of an idiot complaining like that, but I'm so glad that I did, because now I can move on from this point...

SoftTalker, you are spot on with your ideas! I subscribe to art films by post and watch 2-4 a week. It's an excellent service and really keeps my brain interested! I had been doing some art related journal publications this year and am waiting to hear on some editing. I'd like to do some more but my research is practice-led and the financial and physical restraints of my situation make it difficult for me to create another piece that I could write about. When I first got ill and I was still doing my PhD I couldn't perform so I formed a dance company and directed instead. It was something I never would have had the confidence to do had I not been in this situation. We made a film of our performance that recently got screened in Norway.

I felt quite let down by myself at the moment because earlier in the year I was doing a lot better and took a job in Iceland teaching piano. It was only 20hrs a week and I'd worked there before so knew the language and have very supportive friends there. It is a place I love and the way of life is second to none. I could spend the rest of my life there. But my health let me down and I found myself declining in a place with little medical access and had to return to the UK as I couldn't continue in my job. I'm completely gutted about this. But I also very incredibly stupid I thought I would manage. Here where I am now I manage because I rarely leave the house and can work/rest as I need. I must have been completely blind to think I would cope with the job.

Annie, thanks again for your advice. I have been working on a list with a member of this forum to take to the neuro. I think I'm going to try and prepare some response for questions too because I'm very forgetful. I have a friend living nearby who is a psychologist and also has ME. She is very understanding. I know my situation could be a lot worse. However, one of the things I struggle to manage is the fact that my limitations are constantly changing. It really confuses me that I can do one thing one day and not the next. It also makes others doubt me, which is difficult too. I just can't bring myself to stop playing the piano – it's my whole life and while I let a lot of the other things go it's like a lifeline. I feel my ability to play is slipping through my fingers.

It's such an irony that I have built my whole career on muscular activities – music and dance – only to be faced with being able to do neither! But I am glad that it has taught me to value things in a different way and have more time for myself and others.

I am leaving the house today for the first time in two weeks so I hope my body will cope as I look forward to seeing the autumn colours and getting a change of scene.

Thank you for being here.

wild_cat