I think of myself as a character. Some stories revolve around me, some I participate in, some I am but a cameo, some I am merely mentioned, and in most I don’t appear at all. 

If I feel left out then I am simply not part of this story, this moment.
I’m already in a another story anyways .

I am exhausted and I need to rest. I can feel my body and mind giving in, so I’m giving myself the same advice I would give someone else. Rest.
Rest your body and rest your mind.

Rest.
It’s so easy yet I can not. I feel guilt, weakness and disappointment.
I already do so little, how could doing less be the answer.

I cooked “a lot” last week (I.e. I made about 3 meals).
I walked lots (I.e. I dragged my legs while holding on to walls as I moved from one seat to another.
I painted. (In 10 minute intervals, days apart at times).
I took the dog for a stroll 4 to 5 times a day (in 10 minute intervals).
I played outside with the dog, got lots of sun. (Too much).
I gardened at least once a day. (In 10 minutes intervals).
I did 3 loads of laundry. I changed my bed sheets, and I folded clothes.
I cleaned up my studio (a little).
I stood and did dishes a couple times.
I felt good, productive.

But after all that, after ONLY that. I am exhausted.
I feel physically ill and I want to throw up.
Yesterday I stayed in bed almost all day, too ill to move. 
And today I managed to get up! but I didn’t go out.
It’s hard not to go out on such a beautiful day. We have so few of those.
But my body was aching for rest; so I listened and stayed in.
I know with rest I will feel better….not great but better.

Now if I could just rest my mind. 
It is hard coming to peace with failing so much, and so many.

At the beginning of this pandemic I felt somewhat aloof.
I had just returned from a spectacular trip to Costa Rica.
And I was at peace with the idea of this, perhaps, being my last trip.
I had plenty of photographs to play with.
I had mourned the changes in my life and I was finally beginning to accept my health, my probable fate, and my lack of control. 
The fear, the anxiety, the anger and sadness had began to fade. 
And when the confinement began, people slowed down and I started to catch up.
It was the first time in a long time, 
that my disease wasn't stoping me from going out.
I didn't feel guilty for being distant, for being too tired. I could not let anyone down.
I wasn't retreating and MS wasn't weighting me down. 
I was simply ... under quarantine. Like everyone else.


I want to make it clear, I don't like covid19.
I care about our nurses and doctors, and the people at the store. 
I care about the elderly and the people at higher risk.
I don't like that people are dying and that people are sick.
I don't like that people are losing their jobs, their business, their savings.
I don't like the effect the quarantine is having on morale.
I worry for our children's future, and I'm scared I could lose someone I love.
I don't like that we, as a community, are depressed, anxious, and angry. 
I see it online, in the news, on the faces of the people I see and in the conversations I have. People are scared.
The anxiety in the air is palpable. 
The fear, as well as the disease, is spreading. 


I could empathize because I have been carrying all these emotions for years. 
I've lived through it. Through the shock that life as you know it, is forever changed.
Through the fear of not knowing, and knowing all too well, what the future holds. 
I have been swimming upstream for years, trying to escape this nightmare.
But now I just want to lay back and see where the current takes me.
Progressive MS is like a boxing match with no referee.
I am exhausted and completely drained emotionally and physically.
I don't want to fight anymore but the punches keep coming.
The amount of strength it takes me to get up is staggering (especially when I know another punch is coming).
So for now, I'm just going to stay down and take a beating.


I still feel somewhat disconnect and aloof about the pandemic.
I simply do not have the energy to be angry about it.
I will embrace the relief confinement has brought me.
I will focus on the light rather then the dark.
I will rest while I'm down so that WHEN I get back up, 
I can steady myself for the next blow.