February 6, 2017

Tired. His biggest complaint right now is that he can’t believe how tired he gets after doing ‘nothing’. His idea of nothing of course, is not nothing. It’s going to work 8 plus hours a day, climbing ladders, putting up tile, engineering plans etc. He never does ‘nothing’ unless he stays home. That’s when he feels the most tired. Or should I say that’s when he feels the tired most…because he is actually paying attention to it.

Truth is after a stroke your body is never doing nothing ever again because in the background your body is constantly rewiring, reconfiguring and regenerating. That’s not nothing. That’s something. That’s something you want to encourage and support. He doesn’t get that though.

It would be easier to explain to him if he’d ever been pregnant.

I had the same perception when I was pregnant. How could I be tired after doing nothing out of the ordinary? Just walking up the stairs or cooking breakfast would exhaust me. Because my body was creating life. Everyday my body was supplying food and oxygen to new developing parts. New neural pathways were dependent upon the primary life force to do its work so there was an extra drain on my power resources.

HIS body is re-creating life, by building new neural pathways between his brain and his body. This puts a drain on the primary power source as resources are redirected and allocated according to priority…with repair being THE priority. That’s exhausting work! The key is to find a balance of sleeping and ‘therapy’. Do some, rest some. Do some, rest some.

In addition, there is the grief factor. Grief comes with a side of fatigue and since loss is a huge part of a stroke, grief is a huge part too.

There is so much loss with a stroke. Loss of control, being the first and foremost I think. Gone is any remnant of the illusion that you are in control of anything. At any point Life can throw you this curve ball and no matter what thoughts you THINK you can’t control it. You can no longer guarantee that the words you are thinking are the words that are coming out of your mouth. You can no longer guarantee that when you go to climb up the stairs your left leg won’t fall out from under you. You can no longer guarantee that you will wake up tomorrow the same person you are today.

It’s earth shattering.

All the other losses are under that same umbrella in my mind. The loss of independence. The loss of language. The loss of rationality. The loss of problem solving. The loss of physical function (of course). ETC…..

As far as I’m concerned as long as today is better than yesterday we are heading in the right direction.

But then again progress is not linear, either. I know this and I am reminded of it now more than ever. Three steps forward, one step back. Chris will sometimes feel he’s going backwards because one day he feels less steady on his feet than the day before, or he’s having more trouble with finding the words he wants to express himself than he had a few days ago. That ‘one step back’ is especially noted the day after he’s pushed himself too far.

Pushing too far is exhausting the muscles and requires more rest to recover. Several days in a row of pushing would require that much more rest and would indeed seem like regression. Getting him to understand this though is tough. Getting him to REMEMBER this is impossible right now. I really had to relate it back to some other experiences in life, for him to ‘buy into it’ and then I have to remind him of it frequently. Once, again I find myself reiterating the importance of a work/rest balanced equation for optimum recovery.

This is where I see the old-self and stroke-self struggle. Chris’s old self, still thinking it is in control, wants to run the ship like it has for 66 years. The stroke-self just isn’t wired for that kind of wattage. Once the old-self gets frustrated with the stroke-self melt down is inevitable, and because of the stroke-self being unstable and ungrounded, I worry. Stroke self is unfamiliar to me and thus unpredictable. What’s the word they use for an unstable situation? Volatile?

If I can find a way though, to speak to old-self in a language that translates the experience/happenings of the stroke-self then we get to the birth of the new-self. I hope. That’s the plan anyway. So far its been working. Appealing to what is familiar to him, and applying it to the unfamiliar re-establishes some sort of control for him. I guess it is like when your GPS reroutes you. Yes, on the way tot he market you wanted to go left at Main Street, but encountered a road block, so you have to pass it. Your GPS says ‘re-routing’ and before you know it you can make a left at Brown Road instead.

And that is why I too get more tired doing ‘nothing’; being an emotional GPS is not easy.

Hey maybe that’s a job for me?

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