Friday, July 25, 2008
Living Life with MS
I've had a vacation for several weeks and have been thinking about my life, and my life with MS.
In April or May, I applied for Family Medical Leave so I could use my sick time to help me recover from my last MS exacerbation and balance my life. I also applied for disability, which would or could cover about 50% of my income. So I've been working about 50 - 60% time since the end of April (after being out for almost a month.)
First of all, working part-time is the right thing for me. I don't want to go back to f/t. So I need to work that out, whatever it means. If the disability insurance is ok'd, then I theoretically could do what I do now or something else part-time. I'd make less overall, and I think I'm willing to do whatever it takes to make that work.
What I have done for years is be a manager and director of technical staff and interface with the non-techs. My cognitive issues are making that too hard for me to do. I'm trying to figure out what it is that I *can* do. I seem to be able to operate pretty well on an intuitive level, and be helpful in facilitating communications. I've thought about conflict resolution and mediation as a possibility. I've also thought about finishing my old partial degree in music therapy. Something I long for is meaning - being useful to the world, and helping to end human suffering.
I read the book "How To Expand Love" by the Dalai Lama over the vacation. I've read a lot of Buddhist material, but this was the first book I'd read written by the Dalai Lama.
I loved it. It's about one of my favorite topics - how good we humans are at dividing into 'us' and 'them'. I believe that is at the basis of nearly all human conflict. I found the meditations helpful, and I find that when I think back on my childhood, I have deeply believed what he believes. I just didn't know it was ok. He encourages finding a meaningful path and working to increase human happiness and decreasing suffering. And he's talking about the good of the many, not the good of the one.
I don't know if I can actually read a book while not on vacation, but I will try. I'd like to read another one of his, and also keep reading and doing research on a possible career shift for myself.
Meanwhile, MS keeps me somewhat fatigued, running to the bathroom a lot, unable to process too many mental variables at once, full of kooky but no-longer-surprising body sensations and low on energy. And those are my good days. But, I do have some amount of time each day that I can do something useful and productive. If I over do, (say, fly to LA, have a party with Who-friends, see the Who, stay up way too late to watch my friends' band, spend three days at Disney, going on the Warner Bros Studio tour, try to manage too many things at once with family dynamics, and then fly home), then I pay a price. And I'll have less energy each day. It'll take me a while to get back to balance. If I don't catch and stop an infection in time, I'll pay a bigger price. And sometimes, an exacerbation just comes on regardless of what I do. Travel is always hard on me for some reason and I've chosen to only do it for family or friends.
I've chosen to stop doing what I think of as extreme treatments - eating only raw food, or a no-sugar-no-caf-no-refined-flour diet, or the super-exercise plan or going for alternative energy treatments every week that insurance doesn't cover, or injecting myself with drugs that leave me bruised and suicidal. I don't know if this is the "right" approach. What it is, for me, is balanced. Staying in balance seems to be part of the key to managing myself and MS. No matter how "perfect" I was at diet, exercise and managing stress, I would still end up having an episode. It's taken me a lifetime to learn that I don't react well to extreme. There's always a pendulum swing back the other way.
I do walk when I can, when I have the energy; try to get some vegetables in here and there, meditate as much as possible and pray. I noticed I really missed church the past few weeks - mostly because it is a time each week that I can just go and have time to pray, feel, learn from others and experience my spirit. I use Tysabri. It's a good dream compared to any other meds I tried. There has not appeared to be a significant downside to it, and it did seem to stop new progression of plaques in my brain and spine in the last year. I thought that was significant - no other MS medication I've been on has done that.
One thing I know is that I can't say I'm "always" going to do x or "never" doing to do y. It just doesn't work that way for me. I just keep adjusting to whatever is happening. If Tysabri quits on me, I'll try whatever's next.
I've always said MS is like getting old before your time. As you get older, you just have to do what you have to do to be able to keep being useful, and enjoying your life. For me, MS requires making some tradeoffs earlier than I might have planned.
I enjoyed a lot of things on vacation - seeing The Who, going to the beach, not having to be anywhere for the most part. The best part of the trip for me was seeing old friends and that includes my daughter, Dagny. She came out of her teenager costume for
nearly 2 weeks and it warmed up my heart. Sunday night at the airport, I saw her spontaneously go up to Adrian, her brother, and give him a hug. That made the cost and any tradeoffs of this trip, as they say, priceless.