The followup to Pacing Part 1 has been written and re-written over the past couple weeks, until I finally realized that the problem was ultimately that there were other things I needed to say first.
As life-altering as this illness has been, I feel like I've been coping with it pretty well.
First of all, never underestimate the power of denial, and consider that since there hasn't been a Unifying Diagnosis, I spent a good year thinking (and being surrounded by people who thought) it would just go away eventually.
But then it didn't, so there was a shift to figuring out what, exactly, was going on. But then that failed.
So this year, the focus has been on understanding myself and my limits, defining symptoms, narrowing the boundaries on the few parts we can control, and basically Learning How To Live With It.
Until now, coping with this has meant moving forward, taking hold of the good, remaining confident in God's ability to pull purpose from all circumstances....
Which are all good strategies, but over time the number of dings from illness and life accumulate and Holy Moly do I feel like I am about to run headlong into a wall.
Despite illness, life goes on. Bills and housework and Jury summons (thanks for that, Forsyth County), and the HVAC on the verge of giving out and the car which will need new tires eventually... and all of the illness stuff that I just don't want or have the energy to deal with, like finding medicine on backorder, or figuring out why all three stores closest to me have stopped selling my GF/DF muffins.
It's funny that this unplanned blog hiatus came in the midst of my Pacing posts -- which are basically all about asserting what control I can over This Crazy Illness.
Because while there are things like food and heat and activity that impact my symptoms, sometimes I still get blindsided for no apparent reason. And wake up with familiar symptoms (like leg pain so terrible it makes me sick in my stomach), and random out of the blue bolts of fun (like say, nosebleeds. So Incredibly Gross. And disconcerting...)
In short, I'm tired of being sick. I want to get back to life. And as much as I can seem or can tell myself I'm basically okay, there are real reasons why I'm not.
So here's the deal. Here's the bottom line. This is the Energy Budget I'm working with:
2 Types of Activities:
- Physically Active
Anything more taxing than sitting on the couch -- cooking, housework, yoga, errands, church, *anything that I need to get in the car and drive to, even if it's sitting in a park*
- Mentally Active
Anything I can do sitting on the couch but more taxing than watching a movie -- like reading a blogging
- Physically Active: 18 Hours Per Week
Allocated to (in hours):- Mentally Active: 18 Hours Per Week
1 -- PT/Walk/Yoga
2 -- Cooking
2.5 -- Housework
4.5 -- Errands
1.5 -- Dr Appointments
1.5 -- Getting ready (only counting things like hair/makeup/picking out outfits, etc)
5 -- "Free" Bucket, usually used for church, handbells, meeting friends for coffee
Allocated to (in hours):
2 -- Life/Bills/Email
1.5 -- QT/Prayer
1 -- Read
4 -- Blog
1.5 -- Talking on the phone
1 -- Prep/Followup for Dr Appointments
2 -- "Heart" (things like sitting outside, which just make me feel better)
5 -- "Free" Bucket usually used for research, Coursera classes, writing code, twitter chats
I can and do often exceed these limits, but at great cost. Going over these limits take a big toll mentally and physically, and can lead to late nights with a lot of physical pain, and frustrating mornings, finding that I've put clothes away in the wrong places...
I've also been discovering other ways of calculating limits. Steps taken are remarkably accurate for anticipating crashes. If I hit 2000-3000 steps in a day, I am guaranteed to have terrible leg pain that night. And if I hit 3000, my brain goes on vacation and I start to get very confused about things.
I have a feeling time spent on my feet, and heart rate/heart rate zones hit during the day would be illuminating as well, but I haven't ventured into that territory yet.
What really brought on this post was that I've started to realize that what I really need most right now is not just something that is good, but something that is easy.
A trip to the mountains would be wonderful, but it would not be worth the cost. Not even close to it. I need something heart-ful and joy-ful, that at the same time doesn't steal the very few hours I have to save to keep life going.
So while I intend to continue this tracking/pacing practice for awhile, I think the next step is to really take a close look at the ROI for activities. What are the things that are Good. What are the things that are Good For Me, and how do I find and lean into the things that bring the most good out of the smallest amount of effort.
"Sitting outside" is the easy win. I've known for a long time that it is the single best thing I can do on any given day to immediately feel better (physically, mentally, all of it), and luckily it takes very little effort. Unfortunately, life cannot be lived in a hammock in the back yard. But there are other things, like music, that I should be putting in this category and using more.
Another group is the stuff that is good for me but almost more of a chore than it's worth. Cooking is right up there. It's very important that I eat good regular meals of meat and veggies to maintain energy and to even out some of the side effects from different medicines. But it's sometimes hard because along with the numbness I've realized that I have a really hard time knowing if I'm hungry or not. Cooking is important, but it takes so much energy, I'd say 90% of the time it is worth fixing something super easy I can put on autopilot. I have to get really tired of my standard 2-step meals before it becomes worth venturing into new territory. (See: Activity budget).
And then there's the stuff that is just plain draining. And makes me so incredibly angry for having had to spend my very small energy allotment. Like getting the a/c fixed, or contacting the insurance company, or dealing with any sort of medical-related stuff at all, really. Things I just hate to do, and might be a minor annoyance in my old life, but now it is not just the having to do it, but knowing everything that I had to give up in order to do it.
The problem as I see it is that I've had far too many things fall into this third category lately, and not enough from the first.
I need something good. And I need it to be easy.