1 year ago 💘 for day 41, 2021 with 656 words.


I'm on a new schedule. As part of my preparation for my chronic pain rehabilitation course, I've read a book called "Pain and the brain" (catchy right?) over the past week (maybe I shouldn't have tried to finish the book so quickly.. that probably didn't help matters...). This book explains a lot about chronic pain but solving it revolves around 2 things;

  1. Graded Exercise.
  2. Building Reserves.
    Since I like to tackle things head on, I've decided to take on the schedule from this book, straight away. It boils down to this;
  • Figure out how long you can sit, stand and walk before you feel fatigued
  • Some math
  • A figure rolls out and this is the time you get to spend doing things between restbreaks
  • Set an alarm and when that goes, drop whatever you're doing and take your rest break
  • Rest for 15 - 20 minutes, laying down, but not sleeping

Normally I would rest once a day for about 45 minutes on a good day (or not at all on a really good day!) and twice that on a bad day, but apparently, this is frowned upon. Sleeping during the day disturbs nighttime rest and so you should never lay down for longer than 20 minutes, so you don't fall asleep. The minimum 'active' is 45 minutes. Since I have been feeling absolutely terrible since--- That was my alarm. I'm back now. (two alarms later)

I've been doing this for about 24 hours now. Yesterday end of day I started with 45 minutes. Today I'm doing 60. The idea is to figure out your baseline (max time sitting + standing + walking before you get tired = baseline) and to add 10% to your allotted 'active' time once you feel less fatigued over the course of a whole week. I didn't take a baseline because right now everything feels like pain and fatigue. It's strange being back here again after I've had such a handle on my pain for such a long time. Now whatever I do I find my mind taken over by the pain. Nothing relieves it much (or at all) and I just have to make do. I was just mentioning yesterday how being angry at your pain is pointless, accepting and caring for it much better. And here I am, with such pain that it's driving me mad. To make matters worse I've aggravated some light tendonitis in my hands/wrists/arms and although today is a bit better (my hands & entire right arm/shoulder don't feel like they are in burning and stabbing pain constantly anymore), typing this is clearly making it worse (I can feel the little stabs and burns coming back as I type). It's a relief though, to get it off my chest for a bit.

The schedule makes me feel.. stressed. And like a patient. I've always hated planning my days down to the letter and I can tell again that I'm not responding well to it. Every time that alarm goes I feel like the world is ripping around me and I feel so so tired. But this is supposed to help. Although it's not going to be easy. But considering the alternative, laying down whenever the alarm rings may not be so bad. For now.

Time to start turning around the anger and frustration. Time for some supportive talk: Yes you're tired. Yes, it's hard even to hold a conversation. And you can't even paint right now which makes the world a far duller place. And you're so fatigued that you don't even really feel that happy enjoyment from all the snow, despite your best efforts. Yes you're in pain. Such tremendous pain. Such pain that it takes over your mind and world and even laying down is horrible right now. But this will pass. You know that, because it has before. You're doing your best and I'm proud of you for that. You are doing all you can. Thank you for that.

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By Leonie Jonk 💘

Artist & Spoonie I write about my life as an artist and as a person with chronic pain, the struggles, the rewards, the inspiration & the downfalls. Oh and occasionally the odd piece of fiction :)

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