From my Facebook post – 6 September 2013

Yesterday was a very rough day, some people’s souls are just so ugly.

As you know, I rarely get to leave the house. These last 10 months or so have been rough as I’ve experienced some fairly big setbacks, but I’ll get to that another time. 

Yesterday, Nikki had a root canal and had 2 wisdom teeth pulled. She was a mess, and it was time to pick Aedan up from school. There was no other option, so I drove her to the school. Besides the physical challenges I face daily, I would have been mentally unable to get through that on my own, it’s too much for me to process. The world still happens too fast and my mind and eyes both become quickly confused and overwhelmed. Just like many of you are experiencing.

I parked in a Handicapped space and made it about 50 yards to the door Aedan comes out of. For the last few days, the light tremors had come back. I was already shaking a bit. I made it back to the car, clearly having a difficult time. This was NOT one of the many times this might appear invisible to others. Once I got back to the car, there was an older woman walking around my car, clearly agitated. She asked who’s car it was. I responded that it was mine and I started to try to get in.

She stood in my way and demanded to know if I had a Handicap sticker/placard. I said no. I have permanent Handicap plates. Two of them in fact, front and back. I expected that to be the end of it. But apparently ugliness knows no bounds.

Instead of walking away after seeing my plates, this woman actually had the audacity to block me from getting into the car and proceeded to tell me how I took the spot of a little girl in a wheelchair and how that since I decided to park there, they had to wheel her further. She went on and on… I was stunned. 

In front of me was this woman who was hell-bent on badgering a clearly and severely handicapped man (with PERMANENT handicap plates) for parking in a Handicap spot.

First, my brain was too confused to respond. My brain knew what it wanted to say, but once again, I couldn’t speak. That in and of itself is a hugely frustrating part of this sickness. But worse still, is that instantly all my electrical pain, shakes, confusion, etc all became dramatically worse. I immediately found myself in an electrical storm of intense, shaky pain. This is how my body responds to even minor stressors now. I learned about stress/anger and it’s horrific effects within the first 6 weeks of becoming “floxed”. Now 5 years later, it still has the same effects. 

I wasn’t then and still am not too upset about what happened. I wasn’t even that upset at the time, just more in shock I suppose. But even minor stressors will trigger an instant and massive increase in all types of pain, mental/visual and mobility issues. Almost 24hrs later and I’m still shaking and trying to cope with the substantially increased difficulties and pain. Thankfully I’ve learned how to control even small amounts of anger most of the time. If I did allow myself to get angry or more upset than I had been, I would be in a far bigger physical nightmare than I am at the moment. 

This is less about that woman and more about what I’m left to deal with in the aftermath. She struck a chord though in that like the rest of you, I have fought to be believed since day 1. So to have yet another ignorant person insinuate that I’m fine struck a nerve I’m sure. Like most of you, having Doctors be entirely unwilling to believe that something this horrific can possibly happen has taken a toll. And I’m sure subconsciously that bothers me more than I realize. But the black and white of it is here I am, almost 24hrs after one person made brief but insensitive comments, I am paying dearly in tortuous pain and a frightening increase in symptom intensity. For no reason. 

I remember this, this is what I’d feel after every single Doctors appointment. This is one reason I had to give up on Doctors. I could no longer afford the intense increase in symptoms and difficulties after Doctors arrogantly dismiss all that we try to tell them. 

I’m not sure this makes sense or that there was a clear point. I don’t want this to be my first post in 3+ months, but I have to get this off my chest. This is how my life has become, and how easy it is to get physically hurt now. I think most of you would understand or have similar experiences. Thank you for reading, and I hope I’ll be able to post more soon. Until then, thank you all for the kind words. 

Love for you all.
Michael
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