I work ,well I have been off sick and then on a slow return since last September while waiting for a diagnosis, which I just had SFN. I have to do lots of driving for my job and computer work so both cause me problems as both my feet hands and arms are painful and get worse the more I do. I should do 30 hours a week at work, I am currently doing 22 but half of those from home which work are not too happy with plus my gp has said no home visits.
I am just looking at changing my car for an automatic in the hope that will ease the driving a bit, I am also going to the pain clinic next month so I hope to get some improvement on pain management. Long term I am very concerned about how work will go, but I guess I will just have to wait and see how things develop. There is no way I could get any disability payments as the new rules mean you have to be unable to walk 20m unaided. Good job my hubby has a good job, but we still need my money too

Boy what a question! I try not to let my mind go there. Its hard to work these days (I'm fortunate that I'm in the type of business where I've planted seeds for 20 years and reaping them comes rather easy for me). I still can only last 4-5 hours before I have to bail out and go home for my ice bath. I sit on ice packs behind my thighs after about the first hour at my desk.

If I had to go get another job for some reason - i couldn't. I can't wear shoes and that is a BIG problem in the working world.

I always assumed I couldn't get SSI, but I really don't know anything about the rules and requirements.

This post reminds me how mad I get when I hear politicians complain about the 'takers'. Hell, give me a day without pain and I'll outwork every lazy, paid-off politician in the country.

Rant completed.

AFAIK, it depends on whether or not you've paid into the system, and for how long (credits similar to SS benefits). You may still be eligible for some other program, but that may also be income dependent, etc.

Doc

This question is really difficult for me
I have always been an excellent provider for my family.
I have been working since this disease started showing constant symptoms 2 years ago. I work a desk job 40 hour week, and am on call 24X7 every 6 weeks for 2 weeks straight.
Every month we are required to work a Saturday night for about 6 hours.
Between work and taking my child to soccer practice/games and weekend visits, doctor's visits, IVIg, grocery store, cooking, etc. it is extremely difficult to handle. I am certainly thankful I am able to do these things right now, but at what point does the core reactor melt down? I am literally dragging myself out of bed some days.
I always thrived on stress, but now it is my worse enemy and I believe the grueling schedule will soon be too much for me.
Ever heard the saying "My job is killing me", this may very well be the case for me. I am not sure how I do it. I am recently divorced and now feel the pressure to continue to try to make this all work for the sake of my child.
Ever seen the I love Lucy episode about the candy factory? This is how I feel now.
http://www.youtube.com/watch?v=HnbNcQlzV-4

My heartfelt thanks to everyone who has replied. I now fully appreciate that I am not alone in my concerns about work and providing. My little dudes are 9 and a pair of 7 y.o. twins and they just know that "daddy's feet hurt" (they know nothing about it being neuropathy). In fact, one day one of my sons came home from school with an assignment where they asked "if you could have one thing", and his one thing he wished he could do was make daddy's foot pain go away.

Like some of you, there are days at the end of the day where I wonder how I can make it another day. The pain is so unbearable by the afternoon and my feet hurt so badly I can't stand on them any longer and the burning is up over the knees. I kick the shoes off because it feels like my feet are aflame.

How can I work like this another 15 years and get my kids through college where they are able to provide for themselves? I fear for my financial future in some respects as much as the pain. I am working hard to overcome my sometimes "stinking thinking", but I sometimes feel like I am waiting for the proverbial "other shoe to drop", where I one day wake up and just announce to my wife that I just can't do this anymore and that I am going to work that day or any other day. That the tremendous work demands in my condition are simply too much.

All of you out there know unlike any other that we are not faking or understating the degree of our pain and suffering, you inspire me and I can relate to you unlike I can to anyone else. I thank you sincerely for sharing your experiences.