Good thread, Aussie .

I also work each day. By the grace of whatever, however, I don't have to awaken at the wee hours that you and others must. I was by attrition or a fluke - and a sucky one - in my health that I've been self-employed since college. Thank goodness for that! I know how fortunate that I am in having what my docs have told me is quality coverage in my insurance.

Basically, I work freelance - computer forensics or digital evidence, and I am on-call 24:7. One of the companies that contracts work pretty much absorbs the chunk of cost for my comprehensive medical and set me up with a nice package and also backs when insurance gets all twitchy over a couple medications that not a single one of my docs wants changed. I've never encountered similarly before.

It was my health that dictated I really couldn't work by hours most do work by. My body can't hold up and that played a major role in determining what type of work I wanted to do.

I started out in publishing, but, demand (or other folks asking for this and that) helped me decide to further what my knowledge-base could/should encompass.

In the days pre-dx, I'd exhaust myself and I also did so for several months post-dx. But... after working so many years throughout holidays and other celebrations, I finally said: Nuff with this stuff.

I thought of it as setting more healthful boundaries.

I now work hours that I don't have set an alarm clock, and I don't even own one anymore . Too, I do a lot of gratis or pro bono work, and I feel content with that.

I guess it's all about striking a balance.

Right, now, though, with also prepping to set myself up in a new field, I am working even more hours, but... I anticipate the self-satisfaction factor will be a level in the future.

BTW: I am "disabled," but have not sought SSD. Admittedly, I have got a chunk invested in stocks but that is all so fickle.

My dream? To own a working fruit farm in Harmony, CA. When I saw it, my best friend was taking me to the coastal area, near where she lives in CA. I spotted the town and it had a population of 18 (June 2006). But, geeze, it was so pretty and ... maybe, the area, and life, is what one makes of it. I dunno. Maybe I think too big at times.

I worked 30- 35 hours a week up until 4 months ago.
I got up every day at 5 am.
I worked in a small diner as the cook.Most days there were only 2 of us there.It was VERY hard on me.Since while i was cooking ,when it got busy.I would run outta plates and have to turn around and hand wash the dishes and load the dish washer.All the while my food was cooking!!
Then, when the dishwashers cycle was complete,i had to help unload.
At the end of the day i had to refill my food i had used for the next shift,Then scrub the grill and clean up my kitchen!
I had to have rotater cuff repair surgery and decided to not go back after working there for the last 4 years!
I just cant do it anymore....
Now i am at a crossroads in my life.I dont know what kind of work i "can " do...

as a 9-5 job. But I have my own office with a door I can close (which is a big plus on the days I don't feel so good). I am not in general view of the rest of the people in the office, and I sit down at my desk all day.

Although not physically challenging,my job can get very stressful as I have the sole responsibility of a very large weekly sales quota.

That mental stress can make all sorts of negative things happen,so I have to really concentrate on not getting myself worked up in a lather. LOL!

I work everyday as an elementary school principal. My days are long beginning at 6:30 and often lasting until 9 or 10 at night. I like what I do and my pain is pretty much under control;. I too wear ugly shoes and I don't move fast but i get the job done.

Dorothy

PS I really missed this board...I am happy I found the new one. I kept tabs on the old one but I didn't know anyone when it came back uo.

You have to start at 6:30 am, and finsh up at 9 or 10 at night???

I don't think I could have done that even when I was perfectly fit!!! Is your PN only in your feet?

Hello everyone,

I am Terri. I just found your site today. I missed work yesterday. I've just been diagnosed in Sept. of 06. I've had symptoms for two years but it just got consistent in June of 06. I didn't have insurance until August.

Now that it is consistent it is relentless! it was just the balls of my feet, then my toes, then my whole feet, then up my calves, now my neck and shoulders, just last week it entered my hands. I'm really scared!

I've started using a cane because I've fallen a few times already due to the numbness in my feet. The pain is incredible, and my neurologist has me on 150 mg of (can't remember) (I don't have it with me and memory is bad today) I spent all day yesterday in bed.

If I'm not at work, I'm in bed. I don't cook, I don't clean, I don't shop, I don't go out for any reason. When I come home on Friday evening from work, my car does not move until Monday morning when I leave for work. Luckily my kids are in their early 20's and can take care of themselves.

Usually by Thursday afternoon I'm out of energy.

I work for the insurance, but I don't know how much longer I can make it.
I'm 46 now. I'm not married, and my parents are both passed away. No siblings that are capable of supporting me, and my kids are both living off me right now. Hmmmmmmmm

Terri

after reading all your stories, all i can say is that i count my blessings.

i worked at the computer from 7.30 - 4.15 every day.

i was off work for 18 months and was paid in full by my employer. i had been working for 26 years. then the employer asked if they could help get me back to work. so i said absolutely. i went back to work for half days. the employer called in an Occupational Therapist who came in once a week. my typist chair was changed. my work station was reorganised to fit me into the work place. i wasn't back a week and a half and i was "man down". i have now been "ill health incapacity" retired by the employer. i get a lump sum and a monthly pension. the employer was so considerate that it took a month after having been at work for a week and a half to be put into retirement.

while i was off work the 18 months, i would get a phone call once a week from the team leader to find out how i was doing. the employer also paid for some medical bills.

now i'm home permanently. i still have the house chores to do. get the kids to school, making lunch, washing etc. but i don't have to constantly feel guilty.

HI Aussie, dobbieray here also from Aus. Like your description of bodywide PN. I too have this although I was told be my latest neuro that I do not have PN - despite the symptoms and the nerve tests showing deterioration. He said no PN but wouldnt say anymore. He doesnt dispute it is neuropathy but says NO to PN..

I only work part time away from home 3 days per week and the others are spent looking after my 2yrs old active boy and trying to establish my own business from home office as well as trying to di stuff for husbands business.

I couldnt work full time, havent been able to for a few years now. Even if I have to work 3 days consecutivley, I am stuffed afterwards. Like Mrs D I am stoic and 'soldier on' I dont like to show my pain levels or how it affects me. As I work in an office alongside my supervisor, that can be hard, especially when the pain makes you jump out of your seat or wince in pain. My supervisor has witnessed this several times and finally asked me what was wrong, and I explained short and simple.

My neuropathy also affects my bowels and blood pressure, so some days I am constantly running to the toilet and sometimes I can go from being normal to really 'spaced out' when my BP drops suddenly.

UNfotunately I cant take many of the drugs prescribed for our condition as they produce very nasty unwanted side effects ranging from complete urinary retention to absolute mania, sleeplessness and restlessness and extrem euphoria, either that or my mind goes to mush.

In my life, going to work is painful, but it is less painful than looking after my very active son, who although only 2 is actually the size and strength of a 5-6yr old boy, but he doesnt have the understanding that goes with his size, and he is like any 2 yrs old - play is rough and tumble and life is full of "me,me,me". He doesnt understand that mummy cant do all these things with him and that he must be gentle. He does try but he forgets so quickly. So work is a 'haven' for me although tough.

Bless you

Dobbieray

My PN is in my feet (from my knee to my toes) and my hands (wrist down). I don't keep my "condition" a secret and my school parents and even the kids are very understanding of the things I fiind difficult to do. My feet and legs are often very tired and when that happens I sit iin the jacuzzi for awhile and it seems to help.

Dorothy

--how does the neurologist distinguish "neuropathy" from "peripheral neuropathy"?

"Peripheral" just means affecting nerves outside the central nervous system: the brain and spinal cord. It's possible to have syndromes of the brain and spinal cord with symptoms that may exactly mimic those of peripheral nerves (which is why investigations in this area tend to be long and expensive), but one would not want to assume that just because your symptoms are not confined to your hands/legs/feet that you don't have a peripheral problem.

I have body-wide symptoms of acute onset, and it was assumed that I had MS or some sort of central nervous system attack initially, but no testing for those syndromes ever panned out, while a skin biopsy showed DEFINITE small-fiber peripheral damage at numerous body points.