Damn, looking at the date to title this post, I realize I’ve lost a few days. I thought we were still in July. Oh well, so it goes.
Obviously, my neuro-muscular disorder is still active. In fact two weeks ago, I had a six-hour spasm event on the couches outside of the University Bookstore at UL-Lafayette while tours were going on. I would say it was embarrassing, but I was out of it. My wife stayed by my side fending off concerned people. It finally passed and I have bruises in several places from the torn muscles. I think that about covers the visible symptoms, and why I don’t venture out in public but for the seldom event, or with considerable planning.
The good thing is that, with the help of a counselor, we successfully planned and executed a vacation to San Antonio, Texas. This was amazing. I didn’t think I could do it. But, we did. Aggressive resting is what had to be planned and stuck to in the schedule. We did. I used to go like an Energizer Bunny on vacations, that time has passed. We selected events that had a low-physicality score for me and my wife went on events like spelunking. The end result was an amazing vacation we both needed.
I have fully accepted my disorder. Hence, the level of frustration has decreased. I still get frustrated that I can’t do what I want or used to be able to do. But, I try to focus on what I can do. Energy is focused on enjoying things.
The mixture of meds and extreme pain scrambles my brain occasionally. I don’t know how else to categorize it. The nightmares are incredible. As a former spy, I’ve seen and read things that play out in my nightmares. The stress of these nightmares seeps into reality. The two blend and then fade back into reality.
Idiopathic Hyperspasticity is the best name I have every been assigned. My muscles pull taught and destroy themselves causing tendinitis and bruises from the minor tears in the muscles. I have to eat excessive amounts of protein to feed the muscle repair. This is kinda cool, as I love a good steak. However, I generally don’t get steak due to the cost. So, I stick with protein shakes or different high-protein/low-carb food stuffs. I really like salads. So, I’ll have a salad, but have to augment it with some protein-rich ingredient or side.
A good thing that sprung forth from the ULL incident is that I now have a rescue inhaler of benzodiazepene, an anti-seizure med, that is supposed to stop my body from hurting itself next time this happens. The trigger of the event is unknown. I think it was excitement and fatigue over my daughter getting into college. But, so much remains a mystery after five years of discovery. I’m at the point of thinking that a name really doesn’t matter to me any longer. I just want the events to end and be out in public again. But, that will not happen.
I can say as a spectator, the world seems to be going crazy. I wish people would learn to be nice to one another, and just learn to love.
Thanks for reading,
Jay C. “Jazzy J” Theriot