Michael J. Fox wrote a book called "Looking Up." I'm writing his Prologue from the "Beth's MS perspective," since there are so many similarities, but he has Parkinson's. People should get his book. He's more of an optimist than me, so rather than "Looking Up," I'll stick with just "Looking."
In part, it's because I've received some detailed complaining lately, and I know I do my share of complaining, but I don't complain about the daily realities of life. It's just how things are.
20 years ago, I might have written about how I woke up one morning and my legs had a "pins and needles" sensation in them, from the waist down. 2 weeks later, it went away. The doctor thought it might be some strange virus that went away. But it was MS. I was 18.
In the intervening years, my life has seen many changes. Most mornings, for example, I wake up with full feeling in my legs - it's just that one of them is jumping and having a bit of a painful spasm that won't go away until I get up.
Technically, my body is only truly at peace when my mind is completely at rest - that is, asleep. As I awaken, my body has already gotten the news. Any chance of slipping back into sleep is lost.
Most mornings, I'm the first up. I sit up and see if my legs will swing themselves out of bed, or if I've wound them up in sheets while sleeping. I sit and consider if I am balanced. Since I've been on Ampyra, I've mostly been balanced (physically). I sit there and contemplate if I can feel my leg muscles. Over the past 2 months (except a few days last week), I can. I push up, wondering if my legs will work. They do (Ampyra), and I hold my dresser while I ask my legs to push up. Then I push up onto my toes 30 times before side-stepping to "the white chair." There I sit and lift up my foot (heel on ground) 10 times. Then I push up again to standing, to the first stop - the bathroom.
I work around things, turn the shower on, and eventually side-step into the shower. Sometimes my legs decide to spasm on and off on the way to the shower, so there is a staggered side-stepping at these times, stepping between spasms, grimacing during spasms. We have a bench so I sit there for my shower. Sometimes, my legs keep spasming so they almost throw me off the bench during the shower.
Getting dressed is interesting. I avoid clothing with too many buttons. There are too many details here, but eventually I get dressed. Then I pull on a bar to get up. Some days this is easier than others... it's done on a count... 1,2,3,4,5.
Next steps - brushing teeth and makeup. I sidestep down the long sink for this step. And then I sit, turn, and see how well I can lift each leg, 5 times each side. Therapy is a continuous thing all day for me. There are still 3 things I need to do for morning therapy: balancing exercises while sitting, bending down while sitting and then sitting up, and repeated standing at the deck railing if there is time. But I digress. It's time to leave the bathroom and get to work!
My husband is just getting up and I say goodbye to my daughter who is still in bed. I go to get in my van, lining up my feet just so and then launching myself onto the seat. I don't make it quite right, so I have to grab part of the seat and pull myself back, but I have to think to use core muscles during this or it simply won't work. When I am "in position," I grab one leg and then the other, move the seat forward, and adjust my legs so they are ok - don't want leg spasms while driving.
And then, finally, I'm off. I consider the situation as I back out. Some days I'm smiling because everything went smoothly; other days I'm not smiling. Some days I'm looking forward to what lies ahead; other days, I dread the day and what people may say or do that can cause stress and lead my body to rebel. On the good days, I can take things. On the bad days, I wonder why people seem to want to make things more difficult, as if I'm not putting 100% into almost everything I do. If they can't see the effort, perhaps they should see the process described here.
So I'm looking always looking. It's an emotional, psychological, intellectual, and spiritual outlook that has followed me throughout my life with MS. I don't feel the aching pain of loss. Physical strength, balance, manual dexterity, the freedom to do what I want when I want to do it, the confidence that I can always be there for my family and others when they need me - all of these have been, if not completely lost to MS, at least dramatically compromised.
The last almost 10 years of my life actually began with the decision to have a baby. I found myself struggling with new dynamics - could I be a parent? How could I be a good parent with MS?
The answer had to do with perspective. The only unavailable choice was whether or not to have MS. Everything else was somewhat up to me - I could concentrate on MS and the negative - rushing in with stop messages some doctors were happy to give me. Or I could just go on with my life and see how things worked out. Over the last 10 years, things have, for the most part, worked out.
For everything MS has taken, there are new directions, ways of doing things, and leaning on God that I would probably not have traveled. So, "it may be 2 steps back and 1 step forward, but after a time with (MS), I've learned that what is important is making that one step count; always looking up."
OK, Michael J. Fox, I'll look up. Now if anyone reads this, go read his book, and see what I did to his Prologue.