Aside from the physical manifestations of MS (which are, believe me, bad enough on their own), the hardest thing for me to deal with has been the lack of predictability in my life.
For decades, I lived in what seemed like a fairly predictable universe. When I was in grade school and high school, the weeks were formed by classes and after-school activities and the weekends, by the stuff my parents planned for me. In retrospect, I realize how safe things seemed (although I wasn't at all aware of that back then), how normal life was. Stuff happened, of course, stuff like childhood illnesses or snowstorms that messed up the normal ebb and flow of life's movements, but nothing ever shook the rock-solid foundation of my life (other than stuff I initiated, like the 'sex and drugs and rock-n-roll' of life in the 60's).
And then I went to college, dropped out for a few years and started working in office jobs, again sequestered in the safety of class schedules or work schedules, always knowing where I had to be and pretty much what I had to do when I got there. Best of all, I had the energy to accomplish all of it (and lots more outside of work/school) or to change things if I felt like doing that.
See, for a long, long time, if I made up my mind to DO something, I usually found a way to make it happen. I left college, worked, went back and graduated with high honors. I got married and divorced, moved to Boston and got married again. I changed jobs a lot, landing in a slightly better situation, with slightly higher pay every time. We moved from one apartment to another, bought a house, had a baby (who is now a spectacular and gorgeous young man) and continued with our careers. We moved back to the Delaware Valley (which I hated) and I managed to find a job and move to the San Francisco Bay Area, a place I'd fallen in love with while on a business trip.
Oh right. Business travel.
I was terrified of flying on airplanes, so I took a job that required a ton of travel to try and overcome that fear. I went to Dallas and San Francisco, Los Angeles and Denver, meeting cool people and seeing parts of the country I'd only read about up until then. The next job had me traveling to Austin, TX and to Raleigh, NC, as well as to New Hampshire and Maine (easier trips, of course, but still ...). And then I landed a job that included travel to Europe and Asia, and I flew to Shanghai by myself and spent a week at a manufacturing plant working with a team of Chinese managers to design leadership training programs. I was scared to death when I began that trip (flying from the east coast to Detroit to Narita Airport in Japan to Shangai and back again), but damn! it felt good to know I'd somehow managed to pull it off, pushing through my fear to make it happen.
The ability to face and fight through my fears to get where I wanted to go was, in retrospect, a defining factor in my life. If I wanted to do something, dammit, I figured out how to make it happen!
Now? It is to laugh (bitterly). I can't do much of anything for long stretches of time before my pathetic, damaged nervous system stops working. I can't weed in the garden for more than a half hour before my legs get too wobbly to be trusted (I stumble/fall frequently, on soft grass, thankfully). I can't make a date to meet someone for lunch because I might be too tired to drive home afterwards. I can't schedule two things in one morning (like exercising and weeding), because my body can't manage too many demands before it either shuts down or starts doing bizarre stuff. I can't function more than four or five hours in the morning before I MUST sleep (and I used to wake at 6:00, get myself and my son ready for work/day care, work a very full day, get home and do all the dinner and bedtime stuff, work some more, go to sleep at 11:00, and be up the next morning to start again).
And dammit, I WANT to do more. I WANT to be more productive, more active, more interesting. I want to experience more of what Portland has to offer -- but I can't manage it.
It's as if my life has suddenly turned into a kind of pain-ridden version of Alice In Wonderland, where nothing is quite as it used to be and everything is unpredictable.
Except I have two cats as companions and no White Rabbits. And when I wake up, I'm still down the rabbit hole.