Sharing the lessons along the way…

Summing it up Sunday #2

Ya know how you get your panties in a wad about something and you are righteously indignant about it, only to find out later it really wasn’t about that at all?  Anyone?

I have had two back-to-back days of righteous indignation, only to realize the toll the week’s adventures in intrathecal baclofen dose reductions has taken on me.

I hardly know how to sum up the past week if you have missed out on my adventures.  It has been eye-opening, ironic, has helped me to gain insights and shift perspectives, but it has also been emotionally and physically difficult.

During a weepy melt-down at my dad’s house today, he says, “It is unlike you to be so stressed out.”

Indeed it is.  It is even more unlike me to have a melt-down at my dad’s house.  The culmination of the week that is behind me and the week that is ahead, lack of quality sleep, more pain in the pump areas because of the physical therapy routine I am doing, etc. clearly caught up with me.

On Tuesday, the dose was reduced another 10 percent, making it a total so far of 25% less.  Walking is quite different.  I cannot seem to get my legs to go forward very easily with just the cane—but around the house with little steps seems safe.  I can still drive a car.

I can still go up the stairs with Dukie at HEP using the rail and the cane, although getting around HEP’s campus will need wheels.

Here’s how I feel like I better managed the changes:

  1. I sought and reached out for quality time with friends because I needed it.
  2. I was totally ok asking and doing that.
  3. Once I realized that I forgot how hard walking had become with this decrease, I decided to use the tools I have to manage that better (wheelchair at HEP, power wheelchair for dog walks, handicap parking permit, etc.)IMG_4031
  4. I sought out water sources to help ease the tightness in my muscles along the way.
  5. I didn’t buy anything I didn’t need right now—like more toiletries, toilet paper or bulk items.
  6. I shared and processed as much as I could, as I experienced the changes, so that it wouldn’t build up to a meltdown.
  7. I stayed as present as I could and really didn’t get that far ahead of myself in terms of what might happen with the next decrease.
  8. I focused on my work and continued all of my usual or planned activities.

All of that is great stuff, in my humble opinion.  I am going to have to step it up another notch if I am still having melt-downs, however.

This week holds three doctor appointments—neurologist, pump decrease and primary care—and in that order.  I have a busy work week with my student’s assignments, and my older brother and his family are in town.


Comments on: "Summing it up Sunday #2" (2)

  1. You are doing great – and I think an occasional melt-down should be expected. This is an extremely difficult thing to do and it takes a lot of courage. It takes courage because it is difficult and scary, and courage isn’t the lack of fear – it is doing something in spite of the fear. Hang in there and if all else fails buy another package of TP.


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