Sunday, 14 June 2009

My life is a song title

I still haven't found what I'm looking for...

Early this year I visited a neurologist who told me I have "probable MS (multiple sclerosis)". He meant that I had experienced one episode of sclerosis on my optic nerve. That's what this was. He said that it might be 10-15 years before I have another episode, or I might be one of lucky ones who never experience another episode. It's not official MS until there is more than one bout. He recommended 6 monthly MRIs to keep a check on things.

Until a month ago I was sailing along, trying not to dwell on the what if's, although there were moments of worry about what the future would hold. Mostly I feel grateful that MS won't kill me, and that we have time to make decisions and plans.

Then I developed a numb patch of skin on my leg, near my hip, and then lessened sensation down the front of my thigh. I went to the GP who thought we should contact the neurologist. Referred for brain and spine MRIs, which happened on Friday. Now I'm waiting until my appt with the neuro on 1st July for results. Back to waiting again.

I'm in a swirl of emotion. Fear, anxiety, frustration, with occasional joyful moments. I'm also exhausted. Not in a sleepy way, in a heavy can't-do-anything sort of way. It doesn't matter if I sleep 10 hours overnight and have an afternoon nap, I'm still tired. It's depressing.

I have incredibly supportive family and friends. I have been in contact with a friend who has MS - she has been really helpful. I have been a frequent visitor to the MS Society website, which is a great source of reliable information. I have been lurking at MS forums and checking out blogs about living with MS, but those people are at a different place in their journey, and all the reading in the world is not helping me with mine.

So the song title is my life right now. I still haven't found what I'm looking for.

1 comment:

katef said...

Living with the unknown is exhasuting and scary... I hope you get some information soon that can help you move forward in whatever direction you need to go.
Thinking of you!