Thanks everyone - Sandel you always come up with amazing information - thanks so much! It makes me feel so much less alone knowing that someone else is dealing with similar issues. I find the only way to cope is to try and keep going - it's really my degree that does keep me going. I love being at uni, even though I've spent most of this semester bed bound all my friends are in and out of my room all day so I see people every day and I think that has made a huge difference. I've been bed bound at home before and that's much harder because you never see anybody and all you have to think about is pain, pain, pain, pain, pain.... well, you know!!! xxxxxxxxxx PS DBS = deep brain stimulation

Ali - Thanks babe, well, I use dragon and I have scribes. You aren't using dragon anymore are you? I find it pretty useful. It's hard not being able to be in school - I was out for a while when I was younger. It's also difficult not being able to see your friends and stuff - that's why I love living at uni. It's great. I hope that home tuition is sorted out for you soon - I have lots of information on it so I will send it to you at some point. I have been working as an education advocate for a while so if you need any help getting the HT then just ask. xxxxxxxxxx

Jewells - Thankyou!!, yes I do remember you and I am so glad the DBS worked for Jeffrey. My dr wouldn't do the surgery as with the ANS problems I already had etc he felt it would be too dangerous to me but I'm going to ask again anyway - there's no harm in asking and if it means that it would improve my quality of life then it is worth it. I am going to have a baclofen pump put in in January which might hopefully control the dystonia abit more. xxxxxxxxx

Tayla - as ever babes, you are amazing xxxxxxxxxxx I just have rubbish doctors and am in a rubbish medical system - grrr..

So... well, all the same issues continue, as the weather gets worse the pain gets worse. However, I was able to spend 10 minutes at 105 degrees on Friday which was the first time in months! and was able to do it without passing out (though I did try and do too much by going to a lecture I wasn't well enough to be in and nearly passing out, ended up leaving 20 minutes in - oops). The ANS stuff doesn't appear to be as bad at the moment which is great - but I think it's because I'm learning to deal with it better. I've been working at getting my blood sugar more under control and I think that's helping things! It's just hard as I have so many problems eating to try and normalise it. Having to get used to lots of cups of tea with tons of cinnamon and sugar! Been invited out on a date next week and am abit scared about it.. but the guy is really, really lovely! He's called James, he's a 2nd year Chemical engineering student, 6 foot 3, broad, dark hair, rugby player etc... (I know.. they're my type of guy..) I think the date may end up being eating food in my room, but hey, will still be fun - not sure that I can cope with going out with a guy that I barely know with hime having to control my wheelchair, feed me etc and deal with me passing out if he does anything wrong or if my RSD is just being difficult. At least my friends are used to it and are now almost blase about catching me if I'm passing out! lol...

Well thanks very much guys

Much love

Frogga xxxxxxxxxxxxxxxxxxxxxx

PS anyone know whether there are any safe drugs (for RSD) which can be used to stop periods - I have to have very personal care done and my GP is concerned about the risk of DVT so won't put me on anything at the moment because he's scared of causing damage.