09/11/19 Journey of Roller Coasters

I often wonder if when people see me out and about in my wheelchair, they think I’m getting better. The roller coaster of this disease is wild.  Every activity I choose to do has a recovery cost.  The coast for showering averages about two hours of recovery where I am in elevated pain and just plain exhausted.

The cost for leaving the house depends on the activity done and the lenght of time.  Attending Mass at church usually has me recovering on Sunday and Monday.  I’m able to resume my normal schedule on Tuesday.  This time it went until Wednesday.  To be fair, I was active at service.  I usually listen to the service from Parish Hall, entering only to take the Eucharist.  Since my birthday was the prior week, I went in front of the Altar to receive my blessing.  So, there was a little more activity than normal.  But, not much.

Why, then, did it take me until this morning to recover?  The last few days, the pain was so high I couldn’t think a good portion of the time.  Bizarre.

In December, it will be three years since I’ve been fully functioning.  We know marginally more now than we did then.  I learned a host of new vocabulary words.  None of them good.  I thank the Louisiana Legislature for making a new medicine available.  Therapeutic Cannabis seems to attack the disease at its core, relaxing the muscles so they can heal.

My mental faculties take a hit when I take all my meds.  I walk a constant tightrope between sedation and non-sedation.  Occassionally, when I am heavily sedated, I can think better than when I am not sedated and in excrutiating pain. It would be ideal if I could be not sedated and not in pain, but that doesn’t happen very often at all.

Live in the moment and trust in God.  It has taken a while for that to sink in.  Of all the things I’ve learned, that is pretty much the whole ball of wax.  My memory flees me.  I have no choice but to live in the moment.

Thanks for reading,

Jay C. Theriot