Regain, Rebuild, Restore

• Regain fitness
  
• Rebuild strength
• Restore active lifestyle.

These are the goals of my new plan to use our Wii Fit to help me toward my best possible physical functioning this year. Check it out at MiiontheWii.

Check out this stance!

Christmas Day, 2009

10 months since the onset of GBS. Look at those feet?! Just keepin' my balance, baby. You know, I did not realize I was doing that, or if I did, I thought my feet would not be in the photo. So, being pigeon toed does not mean that I should stand around all twisted up, but it might explain why a tired leg would resort to the above position.

All in all, lots of progress is happening...just very slowly. I estimate myself at 70-75% of my normal functioning (though significantly less if you count endurance). At the latest neurologist visit, he said to give it a good 12-18 months and see where we are and what residual effects linger.

As of now:

• No deep tendon reflexes (zero, zilch, nada).
• Still walking with a wider than normal gait (very cute-- not so much! but what can one do without those reflexes!).
• Able to walk a couple of miles on an easy going day without other demands.
• Spending time at work 2 or 3 times a week doing light duty RN stuff (sort nurse in triage, a couple of hours patient care here and there).
• Doing more cooking, cleaning, laundry and other regular chores (the family LOVES this!).
• A couple of hours rest is often enough to recharge after doing a little too much--better than a day or more!

We had a nice Christmas at home with the traditional scones and fruit soup for brunch in the morning after presents. I slept all afternoon after working the night before and staying up finishing wrapping (procrastinator that I am!), so life is getting back to normal. And I am happy.

Month of Gratitude!

Did I really not post anything for over a month?! One thing that should have made it here was a photo of myself asleep at the computer along with an explanation of how that happens now and then (I put it on my personal journal blog instead). That would not have happened in my life before GBS. I guess not posting could mean that things are progressing, life is busier with normal stuff.

Truly, though, I never forget that I'm recovering from something big (at least big for me!). I am grateful to be recovering--this is a blessing. Life is slower and more careful. And you know, there is a lot of good in that. I appreciate the view from my bed (the best reclining place of rest for me in the house) so much. Instead of a window, I get to look out a full patio sliding glass door past a normal balcony into a big backyard with trees and grass. Anytime of year it's interesting and a great view. Most of the year there are times of the day to go out and sit on the balcony and rest, read or watch the kids play in the yard. Today there was plenty of bright sunlight to be seen and felt. This is one of the many things I am grateful for.

Gratitude is endless for my family and the love and patience they show me. The kids really do help more (hint, hint), and they keep me supplied with soft stuffed animal companions on loan to sooth my tingly hands (note the hamster in my hands!). Wade is tired for having so many additional tasks to do around the house yet he remains loving and sweet. I constantly wish I was doing more and watching or sleeping less, but I am glad to be able to do more all the time. Yep, there is so much I am thankful for!

(photo is Mae soothing me as I rested between things on Thanksgiving Day, 2009 in Nashville)

What's the best thing that has happened as a result of GBS?

Wow. Even I wonder how I can ask this question. For me the answer is this:

I am more grateful for everything.  Living. Family. Walking. Running. Speaking. Eating. Seeing. Reading. Driving. Cooking. Functioning.

I am more thankful than ever for all of it.

(A close second would be this: My family has learned to be less dependent on me for almost everything.)

Can do...

Over the past several months with slow, but mostly steady progress in my physical activities, I will periodically list the things I can do. Sometimes for perspective I list the can't do stuff, but only for the record, since I hope to be able to do them soon. Often something makes it on the can do list just because it wasn't on there last time!

Currently I can:

• walk for 20-30 minutes (yep, this means more than once around the block!)
• stay awake while reading
• go up and down the stairs if I forget something (instead of sending one of the kids after it--though I still do that sometimes anyway!)
• carry the laundry basket (instead of dragging it)
• cook real dinner without just directing the action from a stool in the kitchen
• make bread (thanks to a powerful KitchenAid--but still, it wasn't on the list last time)
• do light duty work (at the hospital) without feeling like a wrung out washcloth at the end of 4 hours
• smile when I lose my balance or catch someone looking at my gait with a puzzled look on their face

The reasons to make such a list are to mark progress, laugh a bit at the irony of the items listed, and to keep things positive, upbeat, light and can do. FYI, my can't do list includes running, working on a Master's degree, puttering till late into the night, and starting IV's, but those things can wait while I listen to my kids talk while we walk, while they read, while I bake cookies, blog, and while I rest and heal.

A beginning...

You have a diagnosis. There is a lot you don’t know. Basically, you know how you feel and nothing you read sounds exactly like your case. Not to fear. You will face this illness and slow recovery with courage, balance and, of necessity, patience.

This blog will be here for a little bit of information, a lot of hope and uplifting messages, from one who has had a taste of what you might be going through. I am currently 6 months into Miller-Fisher variant of Guillain-Barre Syndrome. In my searching for information about this uncommon syndrome, I found some facts, but not much else online. There is a mountain to climb...let us begin.

photo from http://www.guardian.co.uk/travel/2007/jan/02/top10.cycling