I was diagnosed in 1987 - was not working then both because of MS symptoms & injuries resulting from a serious car accident. Did go to college - was out of HS almost 10 years @ the time. Sometimes I went to school sometimes I was connected to my classes by telephone. Graduated from college in 1990 - did some advanced study - went to work in 1992.

Between 1992 & when I retired 9 years later if you added the total time lost from work because of relapses, hospitalizations & rehabs - it would be about 7 to 9 months.

After 2000 relapse when I was out of work almost 3 months I started having cognitive problems & within a year had to retire I WAS 40 YEARS OLD!

I am now 49 - I have a Personal Care Aide 7 days a week 7 days a week - I try (usually unsucessfully) to manage many things on my own. My PCA & my 80 year old mom who I live with fix my meals & help me with the "basics" that most people take for granted.

On a good day I might go to Walmart or maybe hang out at the mall. I go to 12 step meetings when I am able & I can find accessible day meetings (driving @ night is difficult because of the MS).

Most days I spend anywhere from 14 to 18 hours a day on the computer with frequent naps in between. I spend a lot of time trying to advocate to get or keep my benefits & in my spare time I am trying to start a non profit for people with disabilities. I would be a lot more productive if I could stay awake more than a few hours at a time. I take Nuvigil but it doesn't help much. On average I "lose" about 2 days a month where I literally sleep round the clock.

Leisure activities? NONE I am no longer physically able to travel & don't have the money if I could. I just ordered a camera & am going to renew my photography hobby.

My thinking is a lot slower than in the past. It takes me a lot longer to learn new things & retain what I read; numbers & mathmatics are beyond me. I get frustrated because of the memory & learning things I graduated from college on the Dean's list & now the most I can read is short stories; novels & such are out because by the time I get to Chapter 3 I do not remember what I read in Chapter 1.

I am hoping to have my non profit launched by fall & I am structuring it where most of the work will be done by other people & that within a 5 year span my role will be less "hands on" - the reality is with progressive MS ANYTHING can happen. I am setting things up where as time passes others will be active in the corporation & mine will be more of a "virtual" role.

I THINK I manage pretty well despite my limitations. Most of the time I still drive an adaptive van. Though I did not drive from December until a couple weeks ago. I was in a 1 vehicle accident that badly damaged the van when the hand controls "locked". The van was tied up in red tape getting fixed & now I am starting to drive when able. I don't drive every day & still prefer to hitch a ride with friends when I can.

I guess my biggest frustration is not so much the limitations posed by the MS but having to rely on others for support & services. As I said in another post - professionals (so called) that don't call back & then there is the infamous world of Social Services - I won't get started on that.

Overall I have lots of plans for the future depending on what kind of future the MS allows but I am dealing with other health issues as well so it is really a day to day thing.