Oxford group?

[Lisaanne63]

Hi, is there anyone with CMT living near Oxford or a support group? Feeling abit alone!

[Emmahart]

Hi, I live in Gloucestershire, but I am available to chat if you would like to, my email address is [e-mail].

[keefer12]

Hi, are you a member of cmt uk lisaanne? They have a Facebook group cmt friends. Doesn't appear to be that many cmt groups across the country but you may get lucky, cmt uk àlso have a list of groups. You can also contact me via email [e-mail] best wishes, you are not alone 😊

[Lisaanne63 in reply to keefer12]

Hi, thank you for replying, I am a member of cmt UK but I only check in now & then. Things seem to have gone abit downhill lately though & I finally feel I need to talk to people who actually know what's going on!

Your email address made me laugh though so it was worth me posting a comment just for that.

Are you a member of the Facebook group? because there are a few & I don't know which one to join

thanks again Lisa

[keefer12 in reply to Lisaanne63]

Hi Lisaanne, yes, l am a member of the Facebook group. The email address is from when I was a dancer and was prior to my cmt diagnosis in 2011. I think cmt uk is a very good charity but exists on a very small budget. CMT has such a low profile as a disease unfortunately and sufferers generally seem to suffer in silence. Stay well, and hope we connect via Cmt friends Facebook page where I am known as Douglas.

[spabbygirl]

I live in cirencester, I don't know of a group in oxford but it is a great idea, lynne

[Lisaanne63 in reply to spabbygirl]

Hi, a group of us are meeting up near Woodstock on Sunday 28th June if it's not too far for you, it would be great if you could join us x

[spabbygirl]

Hi Lisaanne, I'd love to meet up at Woodstock!!! The only thing is I might not have a car. We have agreed to buy a new (2nd hand) one on July 1st so are managing with one that has many faults till then. I love a drive out and would love to visit woodstock. I might be able to come in my huband's van though. I used to dance (badly), ride horses, work as a nurse and loved being active. Then I was diagnosed with CMT mid-thirties and had to change my life. I'm writing books now. When one door closes another one opens, well, thanks to technology or I wouldn't be writing anything!

[Lisaanne63 in reply to spabbygirl]

Hi, just let me know nearer the time if you can still come or I'll definately let you know if & when we meet up again.

I'm 47 & work in a nursery school with 3 & 4 year olds which lately I'm finding physically demanding but my heart & head are still wanting to stick with it as long as possible. I'm on a bit of an emotional rollercoaster as I don't want to accept that I might have to give up what I've always done so that's why I hope speaking to others might help.

I think a change of career is inevitable but I just don't know what else to do, how did you get into writing books, sounds exciting?

[spabbygirl]

Hi Lisaanne, that is so similar to my story. When I was 42 I was working as a social worker, I had been a nurse then moved to social work, I loved looking after people. But I had another baby then (she's 16 now) and gave up work because of CMT. I started writing articles with a journalist friend who helped me but soon I realised I wanted to write longer fiction. I started with a pocket novel for DCThomson (those books you see near the magazines in supermarkets) but what I really wanted to write was fiction about social work cos it is so much not the awful job the press describes. There's more on my website, lynnepardoe.com I so remember that phase of not being sure what to do, I still get phases where I want to go back to work but remember how hard it was and what I'm achieving otherwise. Do contact me outside if you want, lynnepardoe.com If I can help you anyway I will x