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

Hi wild_cat

I remember basing all my hope in a single neurologist´s appointment - twice!

One was a bad one and occurred in the right place at the right time...
One was a good one and occurred in the wrong place at the wrong time....

If you are already traveling – perhaps scheduling a plan B appointment with a private pulmonary specialist wouldn´t be a bad idea

Anacrusis

Unfortunately I think it is traveling that has made my symptoms so much worse. As it is I am reliant on my parents to travel with me, which means them taking time off work. I can't fly which makes the journey itself over complicated as I live in a remote area. I find even going in a car for a few minutes can make my symptoms very much worse and it can take me days if not weeks to recover.
I have my respiratory tests on the same day as my neuro appointment so hopefully that will give some answers. If not then I have the plan b as you say!

But now you have me worried on how you will get to your appointment.
How far is it? How will you get there?

Oh! Thanks for your concern My parents will drive me to the appointment (it's about two hours drive away). We're considering traveling the day before and staying overnight somewhere so it's not too much all at once. At least there is one thing guaranteed; I'll be a complete mess after traveling so at least they'll get a clear picture of my symptoms!