Sunday, January 16, 2011

The Envelope Please...

And the answer is:
Split neatly into two camps—those with MS and those who haven't had the pleasure. (to read more about the question go to my  Previous Blog)
Those with MS expressed that there is no easy answer to the question of whether or not to risk doing a thing and face the crushing disappointment when our bodies fail us.
The 'peds' universally said go for it. It almost seemed like a wall of cheerleading shouts, trying to drown out the downer that life with MS can be.
Personally, I don't know. Reach for dreams or stay safely within the limits? So far, no answer makes sense or fills in the blanks on the 'paint by number' I am working on.
I am not sure that my non-MS people can really understand the quandary, no quagmire, that living with MS creates. Maybe my experience yesterday can illustrate. I woke up after a fairly good sleep feeling about as good as I do. This happily coincided with a monthly gathering of women for a crafting circle. I went for a few hours and enjoyed myself. I knew it was time to go when the fatigue hit in waves and I started to have micro twinges in my muscles. Home I went and within the next few hours MS started to charge me the price of playing. Stabbing electrical strikes in my left thigh, all over twitches, spasms and charlie horses (lumps of hard muscle that slink away with massage only to pop up again in another part of the limb) The most frightening are the electric jabs and weakness in my right leg, which is usually unaffected. 24 hours later I am in too much pain, too fatigued to get out of bed. Church wasn't possible. 
Was it worth it? Not right now, it wasn't. I hope that my nonMS readers will better understand the dilemma. The real world toll that doing something as simple as sitting and doing a simple craft for a few hours can make me pay.
I wish I could know ahead of time what the MS cost will be for a given activity. Then I could decide if it was worth it.
A couple folks expressed surprise  that I was 'doing better' than I had expected. I read back over my last blog to see what they meant. I believe this sentence "My recovery from the July relapse and hospital stay is better than I ever expected." has created the confusion. I am not miraculously cured or ready to run a half marathon. The July relapse led to 10 days in the hospital, loss of function on my left side, and the inability to transfer or dress myself. I came home to a hospital bed. So I am doing better that I was in early August, but compared to what? I can be left alone during the day. I have learned to roll over and have increased use of my left side. My left hip seems permanently profoundly weakened, and scooting to the left is difficult at best. Better? The hospital bed is gone, function has increased, while decreased cognition, weakness, and other symptoms remain. 
Footnote 2:
Please, please, please would folks stop telling me that I am just forgetful, or getting older, or compare me to folks who are forgetful and older than 65. I don't mean to offend anyone, but the cognitive problems I have aren't related to aging. Thank you.

1 comment:

Stuff could always be worse said...

You did describe the price to pay, for a little play! It is a touch balance?? I am not sure