Wednesday, November 16, 2011

Fill, Dwell, Drain

How to not loose faith? How to keep hope alive? How to believe you are getting better even though the body feels so awful and that awfulness just keeps changing and shifting? How to keep hanging in there?

These are just a few of the questions that have been rolling around in the head lately in between naps. Today has been quite interesting. I have had a lot of deep thoughts and contemplations. All of it seems to be about having mind numbing hope and courage, a tenacity for life, and ultimately the ability to be fluid. Flexibility seems to be key. This has been a huge stretch for me --- a place I need to flex my muscles and expand. It's happening no matter how hard I try to fight it.

Fighting illness is challenging. Fighting Chronic Lyme disease which is so complicated and the treatment is the opposite of straight forward is challenging beyond words. This phrase "beyond words" is something a say a lot. I guess that is because so much is beyond what simple words can convey.

Today I have remembered a lot of deeply inspiring times in my life. I have been blessed to have had so many life experiences that teach me the answers to those questions I have. I can't imagine how I would keep going without all these beautiful people that make up the fabric of my memories. Working with medically fragile children and the people that surround them (families, therapists, service providers of all walks of life) is like the icing on the cake. Whenever I want to shout "not fair" or say "enough already," all I have to do is take a trip down memory lane or look around me. I realized that today.

I also realized how desperately I want to be done with this disease. It has been 8 months since I got really sick again and began treatment. I really want to be done. But I'm not done and I don't have a clue when that will be. I want to have a steady curve of improvement and that is not what is happening. Instead I am on a roller coaster that seems to change every day, sometimes many times in a day.
I am learning to lower my expectations and find joy in the simple things, much like the families I work with do. You deal with what the day has delivered and make the best of it.

The last few days everyone wants to know how I am. They know I was so sick for weeks that I couldn't work or function without help. I look better, but how do I feel? Honestly, I feel crappy. Less crappy then the,"God please take me" crappy of a few weeks ago. Somehow through this "crappiness" my spirit and humor are returning. I feel less broken and more hopeful.

This morning I read about an 81 year old Vedic monk (Hindu saint) who has recently started needing daily peritoneal dialysis. He is still teaching classes, attending meetings and doing more in a day then most 18 year old youth could manage. How he described his dialysis really made me chuckle and think. Fill, dwell, drain. Very simple and profound words. That is really the lesson for life. Fill ourselves with knowledge, dwell on it/think about it in various ways and then let go. I really like this metaphor. This is one I will chew on for a while.







Tuesday, November 8, 2011

Lessons of the Bumpy Ride

Wow - what a ride this journey is. The last few weeks have been bumpy to say the least. It seems like my nervous system has just had it. Too much neurotoxin led to collapse on just about every level.

Today I am choosing to not relieve it and to instead see the profound lessons I have learned recently.

Rest

Let go of expectations

Trust that the help that is needed will be provided

Notice the background, patterns and triggers

Gentleness - with myself and others

Forgiveness - with myself and others

See that I am not a failure - I am perfect (with my imperfections)

Life is not linear. There are ups and downs, peaks and valleys. That is okay.

Let go of extremes - take the middle path

Sleep is so important! Especially when the nervous system is just fried!

Embrace fear. Embrace the mind. See what it has to say. Listen and adjust as needed.

More rest

More trust

More letting go of expectations

More gratitude

More joy