MS.. Marginally Sure

My ability to upload photos is acting up. Please bear with me.

Many people I know in the MS world have had their world shaken recently with the possibility of other-than-MS-diagnoses or brand new ways of looking at the disease and options for treatment.

I wrote recently about Lyme’s disease and my testing positive for that.

It has taken me awhile to digest what exactly that means for me.

What I have settled into is this:

MS seems to be the name we have chosen for a group of symptoms that behave like an autoimmune condition for which the medical community has not isolated a cure.

Each person diagnosed has a body which reacts wildly differently as host to these uninvited guests.

My experience has led me to discover that diet, stress level, over-exertion, under-use of muscles, intake of particular supplements and drugs, simplicity and peace quotient in my life, ability to contribute and be an active participant in society, self-worth and connection to Spirit each have a decided effect on my well being and quality of life.

I find it seductive business to wear a name tag of ANY kind..

I abhor even the thought of it but notice the weird draw.

It feels soothing to say: “My name is………… I work at……….. I live…………. I believe in…………… My friends are……………….

For myself, the grand gift of this mysterious illness continues to be the act of peeling away all the name tags and sitting with what is left.

It feels like a BIG DOSE OF NOTHING!!!!!!!!!

In the very best sense.

The thing is that from there I seem to be able to take myself outside the pre-programmed schedule of ‘symptom-alleviating, terror-tainted-watching, numbing KNOWINGNESS’ that comes from set beliefs and lazy living.

It is HARD to be present to a demanding physical existence!

Easier, sometimes to take a diagnosis to bed; coddle it, feed it, soothe it.

Honestly, I am really looking at how much easier it is to take someone’s word for something rather than REALLY SIT with what wants to occur.

People, doctors, friends,books tell me all kinds of things that are at odds with one another.

WHAT is a girl to do?

I am forced to listen to my own intelligence and move from there.

Educated by the knowledge I sense is correct for me, I move forward.

I will, have already, will likely continue to make incorrect choices.

I sometimes wish I could rest comfortably within the familiar confines of a diagnosis of PRIMARY PROGRESSIVE MULTIPLE SCLEROSIS.

But the outcome prescribed there is markedly dim and I am not.

And so.. I wonder and open and listen and watch and see where I am led next.

I am not saying no to the diagnosis of PPMS.

But I AM moving forward with an eye toward possibility.

All I can count on is CHANGE..

And, oddly…that is now a reality I seem to be thriving in more often than not.

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One Response to “MS.. Marginally Sure”

  1. Bibliotekaren on December 7th, 2009

    Oh, after appointments last week you don’t even know how much this stirs up for this “atypical” gal.

    Some times I’m beginning to accept that I’ll likely never have a completely clear diagnosis like the MS Neuro frequently tells me. And, in those time I broaden my identifying to a much larger group of folks struggling with differing labels.

    Other times I’m insanely jealous of those with a distinct non-disputed diagnosis, especially those that appear to not be affected that much. I think I just said, or wrote this, out loud.

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