Wednesday was a stunning day! The sunshine was bright and warm to the skin; there wasn’t a cloud in the sky and everyone on the dog walk was in glowing spirits. When Dona arrived, she had a present for me: some balm and four dog socks and the socks were a perfect fit. Sheba accepted them (one on each of her two damaged paws) and they did not come off. It’s a huge step forward in helping her with her sensitive feet.
I won’t be putting them on her all the time, but when her pads are raw, I’ll be using them. At the end of the walk, she was in fine shape, walking just fine even after walking on rough terrain for an hour. When we got home, Merrill was at her house, so I went over to chat. She and Leo are moving into their new home, next door to me, on March 10.
Di and DR left at 2:30 and the gloom descended. I felt so sad and lonely without them. I was glad that it was so bright and sunny; the Spring-like weather kept my spirits up. Sheba and I went for a short afternoon walk and then we came home for a relaxed evening. I was feeling tired after being a host for three days.
I’m approaching the 6th anniversary of life with FND. What a ride it’s been. I was thinking back, and this thought came to me: I used to spend part of every day on the Internet, reading about PTSD, then FND, and about my symptoms, but now I am chronicling my thoughts and experiences here on the blog. What’s actually happening is more important than theory.
I think friends think of me as the same person they used to know, but with mild seizures and distorted speech. What goes on inside is just as ‘off.’
When I was a wee kid, I saw Ben Hur. Oh, my God I loved it. And in the chariot race scene when Charleton Heston was racing Stephen Boyd. What an adrenalin rush that was! I feel like every day is a chariot race for me. I’m driving one chariot and FND is driving the other. We get up every morning, we race, and then we go to bed. Nobody loses; we fight each other for control of the day. The ‘winner’ of each day is the one with the most minutes of control.
Sometimes I think I’m almost allergic to everything. So, so, so, many things out there in the world, render me profoundly symptomatic, being with friends makes me moderately symptomatic. Only being alone is to be almost symptom free (if I don’t watch television).
I think the greatest thing to come out of this past year of challenges, is that I’m more comfortable with who I am and my condition.
I deflate when I think about my ‘Frani and Chris’ experience. I become sad. I parsed the issue and decided that issue is: Can I trust ‘em? What I know is this: I don’t want another experience like it. So, I ask myself: How can I not have that happen again. And I conclude: Answer all questions about FND; but be very cautious of advice. I am team Shoja. I’d be screwed without her helping me make sense of being hijacked by my nervous system.
When my life was overtaken with visible and significant physical and inexplicable symptoms, the most important thing is to me was to know why I had my condition. Dr. Shoja gave me a rational explanation that explained what was happening to me that seemed credible. And she’s been sticking to her story, with one minor tweak when she changed PYSD to FND. She helps me parse my experiences; she rationalizes the oddities of my life. And she helps me with a lot of psychiatric vocabulary for the strangest chapter yet of the story of my life.
When friends make suggestions to me about how to ‘recover,’ it insults me. Their recommendations suggest that they think I’m not doing enough to overcome my condition, and that’s not true. I’m doing all I can. Further, their suggestions hint at wanting the old me back and discontent with the new me.