hi to you all
I'm in the UK too - based in Glasgow but in the end went down to London for my surgery as wasn't able to cope up here on my own and needed family support. My surgeon has retired now but my neurologist is still working at Guys&Thomas'. Unfortunately for me my vascular TOS was entirely sorted by removing my rib but have recently developed scar tissue again around brachial plexus so back on the meds although just about managing to work full time still.
In the UK, your GP/specialist should be able to get an OT (occupational therapy) assessment as to gadgets you might need and also what help you might need to adapt home/extra support with carers etc. You can see them privately too if you want to know about what ideas exist for you. What you can get on NHS depends on income as would count as personal care, i think. For people in UK, all comes down to getting someone supportive on side.
Hope this helps - be interesting to catch up with other people's experiences as I have found this forum invaluable
Jenny

hi uk
 

what helped me at work was a pt who listened better than my doc, and recommended a drop keyboard and kinesis contour keyboard. the doc was useless unless the pt told him what to do. i also learned to mouse on the left and set up the chair and desk more ergonomically. i used handicapped keys for a time to do clicks and double clicks but this caused a software glitch called killer blue. a side effect was this brought all of the mean people into gossip overload and i overheard and even read some of it. i could take the pain and not cry, as i was used to being in pain. i have a hard time not crying with bullies though. and it is even worse when the bully is a doctor or in computer tech support (my name was PEBCAC to them, Problem Exists Between Computer and Chair).

i also took a demotion which involved less keyboarding and mousing. that too helped. later i got promoted again and had a job where i could get out of the office and drive to job sites. that was great. i could get out and do a lot of walking on the job too.

the job this started on was like being on an assembly line with a computer, as the work rolled in and you had to try to keep up with it and still do a good job. i responded to alarms which continued to roll into my screen. i worked nights and sometimes was forced onto 16 hour shifts, where i still had to work 8 the next day with only a few hours of opportunity to sleep. i am a perfectionist so i worked really hard. the doctor i had was really bad, but the ones i knew who were good did not accept workmans comp cases for love nor money. as a survival instinct i learned to lay the blame for my repetive stress on off the job injuries.

i am in texas but i love to watch british tv on public tv. my favorites are eastenders and dr who. welcome and i hope you find some help here.

hi market risk!

if you live in the Uk like me then you'll be able to claim for disability allowance if you need help with care due to disability (TOS or any chronic pain is a disability if it stops you being able to function your daily chores such as shopping, cleaning etc). Check out this website.....

http://www.direct.gov.uk/en/Disabled...ce/DG_10011731

Im sure that your daughter wont be taken away from you - try and get the financial help you are ENTITLED to so you can get some support - I believe you can even pay a family member with the funds you receive....

I live at home still so get a lot of help with the things I need....im also fairly functional still as long as I pace myself and dont attempt the things that I know will make my pain flare up......this may all change though if i ever lived on my own!

take care