daisy.girl, I don't know the circumstances surrounding the diagnosis of the woman I know with MS who hikes mountains. I'm assuming she has RRMS, and went into remission (or at least her symptoms did). Her husband was one of my physicians a few years back, and he shared that with me. I know the woman casually, and would never have suspected she had MS.

*tkrik looking around for the hidden cameras Daisy placed in her house*

You pretty much described my days as of late, with the exception that I can't sit for very long due to the hug acting up. Once this exacerbation settles down I will be back to my normal routine.

Of course, we all have our good days and bad days and the things that I do on each will vary. I take care of the house and do the household chores, some of the grocery shopping, read, do artwork, visit with friends and family, go to the library once a week, and things like that. That is my normal routine and the one I striving to get back to.

BTW - I know people who have MS who are just fine and others who are in wheelchairs. I think a bigger portion of us fall somewhere in between.

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.

Boy, I never know what kind of day I'm going to have when I wake up. Some days I have a lot of energy and my brain is cognitively okay; others I nap all day because of severe fatigue and I am in a fog.

I can be walking when my legs turn to jello; I suddenly walk like a drunk; I can get spasms at the blink of an eye. And my brain-oohhh I miss it so! I used to be able to multi task like a lunatic; now if an idea comes into my brain, if I don't write it down or record it on my phone microphone, that fast it's gone. My bladder has days when I feel like an infant, which is quite depressing. I think I have toes, because I can see them, but I can't really feel them; that was my first real indication of trouble and sent me to the neuro. It took 3 years to get a dx.

I do spend a lot of time watching TV, on the computer, or playing with my puppy. It's difficult to read, because my attention span and memory of what I've just read are not good.

I do try to work out at least 3 times/week, and try to take the pup for a walk daily if it's not slippery outside. I also take the Wii out and do exercise on that.

I have been denied once for disability, and am waiting for the final decision on appeal. I can't work due to leg instability, cognitive dysfunction and bladder issues.

I try to make lemonade out of the lemons life has given me, and it's been sweetened by the most amazing spouse on Earth. I am truly blessed.

I've had MS for 30 years. Back when I was working I worked nearly nonstop. Nowadays I work nearly nonstop at just taking care of my daily life's details.

I get up every day at 7 AM, make breakfast, feed the cat, comb and brush her, dress, make the bed, wash dishes, tend to the cat's box. Then I get on with whatever I have to do that day.

Sometimes it's a medical or dental appointment. This can take many hours because of the waits for transportation. I use a paratransit van system and have to schedule rides a day or more in advance.

Other times it's laundry, ironing, cleaning the bathroom, washing the floors, dusting, vacuuming. I take care of a few plants too.

Sometimes I have to change light bulbs or do repairs. Other times I have to do what I can to get rid of the ants around here. I have a toilet that backs up often, and I take care of that with a snake and a plunger but it's a procedure that can take an hour or so.

I make a salad for lunch, and after eating it and washing up the dishes, I take the trash out to the dumpster and get the mail and deal with it. Then I go to sleep with my feet elevated (to prevent swollen ankles/feet) for about an hour.

I brush and floss my teeth every time I eat--and that is 4 times a day. I try to take a bath every day and wash my hair every few days. I also have to set my hair for it to look halfway presentable. I cut my own hair every month or so.

I mend my clothes if they develop problems. In my spare time I'm patching up the quilt that has been my bedspread for many years.

In the rest of my spare time I listen to Talking Books from the library and sometimes watch a DVD movie from Netflix while I eat popcorn I've made in the microwave.

I write letters and try to keep up with my accounting. I'm responsible to HUD and the social services system (Medicaid) and have to save and present lots and lots of receipts.

In the late afternoon I make dinner, which is usually a frozen meal I put into the oven or just cook on top of the stove. Then I wash the dishes and put them away at the end of the day.

About once a week I wait for a grocery delivery from an online supermarket home-delivery system. Prescriptions are also delivered. I buy most things through mail-order but sometimes take the paratransit van to a store to find things I need or want.

Sometimes I take photos. I spend a good bit of time online. I'm also busy clearing out a lot of papers I've saved over the years.

Evenings are the times when I work on the papers or watch a movie.

I also exercise--a few minutes every morning and at bedtime, and half an hour in the evening with an exercise DVD.

I'm off to sleep by about 11.

I don't go very many places but that is all right with me. Buzzing around can be tiring.

This whole account doesn't add up to much. I should mention that when I have occasional work to do, I put everything on a back burner until I get the job done. This happens once every few years.

I keep track of my medicines and set them up for each week. I also have to remember to do eye drops and oral moisturizers and other maintenance tasks. My wheelchair, glasses and hearing aids need regular routine attention too.

Just trying to stay afloat can take lots of time and energy.

Agate, you are so organized. My day would be much like yours, if I wasn't such a lazy butt.

I pretty much do what I want to do when I feel like doing it, these days. I do keep my home and myself clean and neat, because I like it that way. I take good care of my old pupper.

Everything else I get done between TV time and PC time.....IFFFF I have the time..teehee!

The truth be known, I have never been an organized type humanoid, though, so why start now..

You put me to shame....not really..

Sally, I should have mentioned that I don't watch TV. If I did I'd never get anything done.

I keep trying to remember to dig up shows I used to look at sometimes and see if they're still there but the TV schedule is so hard to read that I give up.

As it is, I turn the news on for an hour of local and national news but even then I'm usually doing something else while it's on.

I get irritated at all of the commercials.