September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

October 11th 2016 Choices re challenges - like a conversation while standing...

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I attended a morning Rosh Hashanah (High Holidays) service for my congregation.  My husband Ron and I shared a reading, of which he read the majority; I read the first three lines.  I had printed out the text, re-formatted, so I didn't need to deal with my reading glasses.  After the service, we joined our friends for the Oneg - the food/social part of the event.  I engaged in conversation with a friend, while standing.  Then I moved on and had a conversation with two other friends, a third joining in at some point. 

This was a BIG challenge for me.  Balancing while standing, rather than sitting down, is more work.  Add in processing conversations while being aware of other sounds in the room, making some eye contact - this is multi-tasking!  I wanted to sit down, but this would have meant excusing myself, and excluding myself from a few minutes to connect IN PERSON with friends I rarely see.  So, I stayed put, but I was working hard, and could feel myself getting hot with the exertion of the work.  I occasionally looked around for a chair, as if one would magically materialize right next to me.  When Ron eventually walked over, I told him I needed to go.

I knew we were going to a cousin's house for dinner later.  Doing TWO things in one day is always a challenge, but two BIG things?!  What was I thinking?  I tried to keep things low key, and did rest in between, but going out again was hard.  There was another car ride - a longer one in the afternoon - and more people.  I limited my standing as much as possible, which meant spending some of the time either alone, or simply not engaged in conversation with anyone.  I was tired.  I had already agreed with Ron, and my daughter Cara who was able to come along, what time we'd leave.  After a day of sensory overload, it always takes me some time to unwind, and get to sleep. 

When special events present themselves, I have to make choices.  I spend a fair amount of time by myself - yes, I live with my husband, but he goes places without me (which I expect him to) - and I didn't want to miss out on the holiday.  But making choices is never easy - I often have to sit with the question of  "what do I do?" for a little while, before I make my decision.  I never go to evening High Holiday services anymore.  Evenings are more difficult, and there's no way I can attend both the evening AND morning, so I only attend in the morning. 

I ask myself, once I've gotten through a challenging day (or event), if I'd make the same choices again.  My answer varies.  Knowing when to push myself, and when to say "I'm going to have to miss out," isn't always obvious.  I do my best to make sure that after anything really demanding, the following day is low key.  Even without special events or outings, planning and scheduling are a constant issue for me.  I've gained a pretty good understanding of my disorders.  I know that some seemingly ordinary things - like a conversation while standing -  are a big deal for me.  Even so, it's impossible to always anticipate EVERYTHING.  It's also not always possible to know all the details of what will be involved.  So I try to make good choices, and looking back, focus on whatever element of what I did that was successful.

Clarification:

As I said in this post, I already had 1) processed the service, 2) done my reading and 3) was dealing with a fair amount of noise in the social hall.  I also had not had much of a break in between the service, and the socializing.  All of that mattered. 


BUT, I want to be sure people understand that literally standing still is difficult, because it is static.  When I go for daily walks with Ron and our dog, he and I often talk.  Although this is challenging, movement is better.  When upright, I always prefer movement to standing still.


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