recently diagnosed with MS, struggling with optical neuritis, any tips for coping?

[tpsbmam]

15. Ah, coping.....

I'm sorry to hear you've joined the ranks of MSers. The good news is that the disease is somewhat manageable for most of us. Yeah, when I was diagnosed the doc thought it was a brain tumor or MS -- I hoped like hell for MS!

I was diagnosed 25 years ago. I managed to finish my Ph.D. after I was diagnosed, and that included going to grad school full-time and working half-time. I'm amazed now at my determination to finish! I had a few whopper exacerbations in there that threatened my ability to finish, but I just kept pushing through. The worst was during my internship year when I had a totally disabling bout of vertigo and missed almost 3 weeks of work -- I damn near didn't finish, which would have killed getting the Ph.D. But I managed to finish, even going to work at one point with another exacerbation getting my solu-medrol infusions early in the morning and racing to work for the rest of the day, hiding the IV line in my arm! My neurologist wasn't thrilled that I was continuing to push so hard during an exacerbation but he understood and worked with me.

MS did finally win out and I had to retire early, but I had a good run at it for a decade and a half!

Coping....how we cope is influenced by so many things. I was lucky enough to come from a family where whining was frowned upon. One was expected to just get on with getting on when the going got rough. It helped me greatly when it came to getting on with having a professional life. I didn't do as well with having a "life" in addition, though. When I wasn't working, I was THOROUGHLY exhausted! I'd get home from work, take care of my dogs & play with them for a bit, feed them and me and crash by 8 p.m. Weekends were spend doing errands and SLEEPING, which I learned was common for working folks with MS. It seriously impeded my private life, even to the extent of irritating friends and co-workers when I refused to go out for social occasions. I simply didn't have the energy -- I could do one or the other, not both.

I actually found a toughness in me I didn't know I had. There was a steely determination not to let any of it get in my way of meeting my goals, at least professionally. I frankly didn't have the energy to get overwhelmed by my lack of socializing -- everything was focused on doing a job I LOVED, and doing it well.

Even little things can make a difference when it comes to coping. I had a great neurologist -- he said, "don't get overtired, avoid stress & get on with your life." The first two made me laugh -- that just wasn't going to happen! And the last was great advice. My only prior experience with MS had been knowing a friend of my parents, who was a very successful senior editor at a New York publishing house. Someone asked me to talk to a young woman who'd been diagnosed with MS and thought her life was over, despite having few symptoms at the time. The only two people she knew with MS were severely disabled and her impression is MS had ruined their lives. And when she was diagnosed, the fool neurologist said, "I'd rather tell you anything but this....." Just the messages from the two different neurologists could make a major difference in how someone faces the disease!

I guess I got by by focusing on what I could do, not what I couldn't. "I can't" still isn't something you hear come out of my mouth too often, though I'm pretty physically challenged these days -- I use a walker for short distances and wheelchair for longer distances. I had one whopper exacerbation in 2009 that took my legs out. I was already walking with a walker due to an exacerbation the year before where my balance left and never quite came back. Well, in 2009 my legs simply gave out -- I was suddenly a paraplegic! Some of the strength has returned, but not enough to keep me out of a wheelchair.

One of the things I find is I have an advantage over lots of folks who get thrown by little things happening. I learned to cope with the unexpected over the years. I frankly learned the hard way that "shit happens," and had to learn to get comfortable with unexpected shit that life throws at people with MS....you're just going along, minding your own business and then WTF, you can't see one morning! You learn not to panic. When my legs went out from under me, local firefighters actually had to come up and lift me back into bed (I'd gotten up to go to the bathroom at about 3 a.m.). I declined going to the hospital at the time, pretty much saying, "meh, it's MS....I may be walking fine in the morning. I'll wait and see if my legs are still kaput then." They were still kaput and I did end up calling an ambulance and getting hospitalized. But by then I was so used to exacerbations, it could have gone either way and I was pretty relaxed about the whole thing. This is life....for everyone. Some get luckier than others, but eventually, everyone will have to face crappy stuff coming their way. I'm pretty used to it at this point and not much throws me!

I think I'd encourage to always keep pushing, not to let MS take more of your life than it has to. Let the unpredictability inform you.....life is so random, so unpredictable in truth for all of us, find ways to embrace it into your worldview. It's helped me have a richer, deeper view of the world, of the randomness of being. When I look at the big picture, I'm still one of the lucky ones. I could be a Jew in 1939 Germany. I could have been a Rwandan woman watching her children starve to death & facing horrific torture. I could have been faced with all kinds of horrors that so many have faced in life. I worked in the medical field -- I had 9-year-old patients die, spending most of their young lives battling horrific illnesses going through one horrendous treatment after another, willing the next just in the hope that they'd win and live. Yep, I'm one of the lucky ones, and that outlook has helped me through many rough times!