Hey guys,
Thanks for your lovely comments. I hope you enjoyed the blog!
To answer a couple questions-I have regressed somewhat since the US. Back to being bedbound etc. I think the daily saline and klonopin were helping way more than I thought, even though I still felt very bad most of the time!
I also agree about the metric of using speech as severity. In some cases, obviously it says a lot (no pun), but in others I am not so sure. I come across WAY better than I actually am, probably because I can speak. I know that because I can almost speak as much as a couple years ago whe I was moderate, but in hindsight I was positively healthy then compared to where I am now. Ask me to hold my phone unaided for more than 2 seconds, walk down the stairs (without saline) and welcome to shake-city-I just can't do it. Whereas some people I have talked to speech is a huge issue, despite being able to do much more physical things than myself. So yes, its all individual.
That said I am in a better position now having access to Dr's who do not question. I need to figure how to get prescriptions from them to the Uk however-CVS do not ship abroad I believe so if anyonehas experience with that, it would be helpful! I could just use online pharmacies but these are sometimes hit and miss...
Anyway, your comments have kept me going and writing so thankyou to all of you. Hopefully it gave some insight into a crazy trip, and the wonderful people in it
B