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...

September 27th 2015 Pacing - it's about management but also moving forward


I've used the word "pacing" in my writing, and in conversation with people, but I'm not sure how well people understand what I mean.  I like the word "pacing".  Pacing literally has to do with "the rate of movement, or activity";  that's actually what it says on Dictionary.com, although there are a number of definitions.  To me, what this definition means is that pacing is about timing, about how the pieces of my days fit together.  It's become a really basic management/coping skill for me.

How I pace myself depends on a number of factors.  
Getting enough rest is vital - sleep for me is like medicine.  
Which activities I mix with what other activities.  
t's about how long I do any one thing before I do something else, which depends on what the activities are.  

If I'm on the computer, what am I doing?  How visually challenging is it?  What is the cognitive processing involved?  It usually ends up being a mixture, and I have to have some self-awareness so I know when to take a break.  

Some household chores are more spatially challenging than others.  I also pace my therapy days differently, especially the first couple of hours after my sessions.  Figuring out pacing would be different for someone else, not just because each person's activities vary, but because we don't all have identical problems or bodies - and everyone's sensory system is different. 

My vision disorder factors into what I do at least as much as my MAV does - I really can't separate the visual from the vestibular.  On a good visual stamina day, I may be able to do a bit more on the computer, though I still need to take breaks.  I may try to read a little bit.  I'm talking about sentences here, not full pages - though it also depends on the format - lengthy sentences on a standard piece of paper are harder than short sentences.  The level of challenge also depends on the font size and style, the contrast of the paper vs. the print itself, and the ideas or content conveyed.    

When I take breaks, particularly from visually challenging tasks, I try to do tasks that involve much more gross motor skills, so that I'm moving my body and the visual experience is much different.  Sometimes I may just sit for a few minutes, and pay attention to my breathing, or if I walk around, I'll notice how I'm moving.  If something doesn't feel good or quite right, I may try to focus on something else.  Focusing on or noticing what doesn't feel good may initially be a good idea, so that I can change or adjust something, but after a point I find it isn't helpful.  Rather than becoming sort of hyper focused on what doesn't feel good, I want to do what I can to help myself in the moment and then move on.

When I think about pacing, I take into consideration if I'll be going out, which I've been trying to do a bit more of lately, and if so what the outing involves.  Am I going someplace familiar? 
Will there be a lot of people, and if so will I know them?  
What can I anticipate in terms of cognitive processing?  
What time of day will I be out?  
Do I need to make arrangements for food?  
How much travel time by car will there be?  
Once there, will I stay put, or move around?  
These aren't new questions for me, and there are often other questions or issues in the mix.  Every situation is different, and I always consider the costs and benefits of pushing my boundaries. 

If an outing is really challenging I think about not just the day but the entire week.  When I attended a morning Rosh Hashanah (Jewish New Year) morning service, and then went out to family in Marengo (a one and a half hour car ride each way), which I hadn't done since getting sick, I stayed off the computer completely.  What time I had at home was very low key.  Sometimes  - like with Marengo - I make decisions really close to when an event will happen, though I will have done some planning and thinking leading up to the event.  

I talked with Ron beforehand, and we agreed on the time we'd leave - which was based on when I needed to be home, and my daughters understood this as well.  I made my decision very close to when we left - it isn't always possible to make a decision very close to an event, but when it is, I take advantage of it.  I made management/coping decisions throughout the visit, but family members seemed truly appreciative of the effort I'd made, which made me feel good about having done it.

I don't like that I have to incorporate pacing into my day - just listening to what I've written reminds me that one reason I get tired is because of the mental energy that pacing and planning involves.  I'm used to having to do it, but it's frustrating to have to pace myself, to have to stop - sometimes it feels like a lot of bits and pieces - like all the bits and pieces I have to work on in rehab.  

But in the end, pacing is helpful.  I don't like neurological fatigue, the sense that I'm just done, and can't process anything else. It's very different - to me anyway - from physical fatigue, and from mental fatigue as well.  If I pace myself, hopefully I avoid feeling really drained, like I need to shut down, and I can stop when I DO feel the "shut down" feeling creeping in. 

I want, as much as possible, to push my boundaries a bit at a time.  So as I pace myself, I also say "OK, what's the worst that can happen?" and I realized recently that I've already been down that worst road.  I DON'T want to go down that road again, but I'm telling myself I won't.  I have SO much more info, I understand my situation, I DO have coping skills.  

Dr. Glad (former therapist) said to me recently that not only was it really good that I'm pushing out my boundaries, but that wanting to do something can be powerful - it's not magic, but it can be that extra motivator that helps you to make something really hard happen.  So I'm always looking for that sweet spot (this is a term Dr. Glad used) - pacing but also pushing my boundaries out a bit so I can move forward, without over-doing it and setting myself back too far.  I definitely don't always get it right - I think that would be impossible.  I know rehab isn't a straight line, and even when I have to recover, I remind myself that my brain has absorbed and learned something.


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3 Responses to September 27th 2015 Pacing - it's about management but also moving forward

  1. Hello: I have a vestibular disorder .... it leaves me wheelchair dependent and episodes of severe vertigo. In my course of years of rehabilitation I have discovered that I am motion blind and it is for this reason that I find it difficult to go from line to line when reading, judging where people are in my space, not being able to judge how close a care is to a street corner so that I can safely cross the street etc. You might want to look into this with respect to vision.

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  2. Thank you for sharing this info... I'm not motion blind, but rather very motion sensitive... it's bc I have more than one issue, and re motion, bc of my impaired VOR... good luck to you, it sounds like you've had a long road!

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