Every day in stroke recovery is different. As is every night.
I had been a chronic insomniac for 30 plus years when I had my stroke 14 weeks ago. Maybe the sleep deprivation caught up with me despite that I truly believed I had learned to roll with it. It was a most cathartic and productive time at dark o’clock in the middle of the night, I did some of my best writing while the world around me slept. Interestingly after the stroke I began sleeping at night, but to be truly transparent I must add that I also am sleeping during the day and evening too. The Neuro Fatigue is a constant struggle that no amount of rest resolves. Now at 2am in the morning I have been stood up by the Sand Man. Again “Mr No Show Johnson” is some other place than I am.
So I write.
Staying Determined to put one foot in front of another even when you don’t feel you can lift your head is both challenging and empowering. That also can be different day by day, lately it’s more often than not. Despite being Determined to “Keep Keeping On” there are days that the effort, energy and motivation are epic fails.
There are days when getting out of bed and dressed are more than I can manage. Yet there are days I cannot begin my day fast enough. There seems to be no pattern to rely on, except when I have been especially busy and productive the day before I can count on not having an ounce of energy, sometimes not for a couple days after. Accomplishments of activities I once just did on autopilot now become enormous victories, these typically happen on days I feel energized and motivated. I celebrated the day I managed to use a manual can opener. On better days for my coordination and mobility I am able to draw and paint. Not good but I am Determined to do it anyway. Either kind of day may find me writing for an emotional outlet, being able to write again finally provides me with the most sense of things being normal. We need to connect with our “normal” sometimes.
As of yet I’ve not been released to return to work, my radio show, or even driving, early on my plan has been to use the time to continue the physical therapy every day, for joy to draw/paint even though I am right-handed and I have limited function still of my hand. Remember, every day is different (this is true for impairments from the stroke.) I also planned on using this time to sort and purge my cluttered home. I have an office/art room that is chock full of my business, art supplies, art tools, unfinished projects, music gear, music media….and junk! I have only used one corner of the room recently, and it was for a guest bed. Soooo…my agenda has been to make the room usable again for what I intended it for. I even asked a friend to move an old pedal sewing machine out of the room for me which I’d only been wanting to do for an entire year. Procrastination is certainly my middle name. Take one measure of Procrastination, mix in No-Motivation, then whip up weeks of Energy Deficiency and the perfect storm for Nothing Productive is created. I wasn’t making much headway in rebuilding a structure to my days post stroke. I’ve only managed to clean out and organize a few drawers. Yes, there is an analogy intended there.
I did actually start to make one routine happen while restructuring my life. I’d begun to routinely beat myself up on days that held no productivity to my name. I’d throw my hands up and declare “I’m freakin’ done!” This isn’t like me, well… the old me. Brain injuries change people. The old me was Determined. I needed to find her. Finding me and finding that determination and resolve was going to take some creativity on my part I soon recognized. I’d have to dig deep to find my way back to determination.
The very first thing I observed in my dig was that I was going to need to reassess what determination and living Determined means for me now. What was is not necessarily so today. Maybe it was time to accept that.
Perhaps living Determined is about having the courage to accept just getting out of bed is enough. Especially on days when the fatigue is like being hit by a Mack truck.
Perhaps it is enough to be Determined to face the next hour when this one you can hardly breath, your body has gone numb and you fear you are having another stroke? Maybe being Determined is to accept that this is anxiety, not a stroke, and knowing it could happen again you face the next hour, and the next.
Being Determined means knowing when to push yourself, and it means knowing when to stop while you’re still ahead.
Being Determined I’ve discovered for me is knowing that just because something didn’t work today doesn’t mean it won’t tomorrow.
Being Determined is trusting that the struggles encountered today do not need to be my forever. My perception of living Determined means I must embrace the new me AND all that it means today post stroke.
I’d like to think that’s Determined Courage.