I blinked and fifteen days passed.

We spent over two days journeying home to America from France. First to Geneva, then Philadelphia via Madrid, then a night at Dad’s and then, finally … thankfully, we got home. Sleep in my own bed is like liquid gold. The soft snurfle of Eli curled up contentedly between us, the rhythm of our night time routine, the food we love in the fridge. So much cold water. Delicious.

And then more travel, doctors appointments, Eli’s little boy surgery to prevent any more little Elis.

I think I have a stomach bug but who knows anymore. My neurologist seems to be indifferent to the ebbs and flows of my health – as long as the MRI scans look solid, as long as my organs are functioning – all the other bi-products of MS are insignificant. Except, they aren’t insignificant to me. To my life. To the exhaustion and the fuzzy-headedness. The inability to function in a society that insists we be producing every moment of every day.

I’m so tired. I’m tired of being tired, I’m tired of explaining (with a smile and self-flagellation) the basics of my version of MS over and over and over again. I’m tired of feigning ‘okay-ness’. I’m tired of dreams slipping out of my fingers, of watching the time tick by slowly, unable to do anything except survive. I feel as though I’m drowning, slowly, sipping air every few minutes so that the agony never quite ends.

I’m tired of feeling alone.

I always wave it away, assuming I miss my mother and by default the loneliness cannot ever be assuaged. But I think I’ve always been alone. A little American girl overshadowed by a British family who never talked about anything, a family who shunned illness as though it was the worst of all deformities. A little American girl whose father loved her but didn’t quite understand her. Why isn’t she more British like her mother, his beloved wife? Why is she so … contrary?

Change is uncomfortable. I know this. I spent my life changing. Changing schools, changing houses, changing after-school activities, changing lives. It’s always uncomfortable because the unknown is uncomfortable. The devil you know is better than the devil you don’t. But why? Because the devil you don’t could be ANYTHING and at least the devil you know is a known quantity. Knowing is infinitely less scary than not knowing.

Walking away from a life – even one I consciously built – is what I do. It’s what I’ve always done. When things get too familiar, too comfortable, I get antsy.

This blog post is about nothing. It’s about this moment in time. Home from five days at my Dad’s house, finally back in a safe space – a space I can live and exist without having to justify or explain. That having MS is hard. And it’s unpredictable. And I can’t promise anything. Ever. That sometimes I don’t have the patience or bandwidth to be pleasant and nice and accommodating. That sometimes the bigotry and bias and lack of perspective is suffocating for me and I don’t have the forethought or inclination to sit silently by.

Did I mention I’m tired?

I’m so fucking tired.

xox, g