During the active phase of Wegener's Disease in particular, you might be suffering from a lot of pain. I know that Alicia suffered so much that at one point she just wanted to jump out of a window to make it go away. While drugs are the most obvious way of dealing with this pain, especially in the short term, you also need to have a plan in place to live with the pain in the long term. If you don't have such a plan, you may run into the boom bust chronic pain cycle.
The boom bust chronic pain cycle
Here's how it works.
On a good day, your chronic pain is manageable. You run around the house doing all of the chores you put off when you couldn't face them. You meet up with friends and family, and you might even do some physical exercise. You try to do everything you have put off for weeks in just one day.
You push yourself too far, and then immediately regret it as your body reacts and you're in immense pain for the following days. You're now in too much pain to do anything, and it does not make you want to be active again as you'll always have that warning in your head associating activity with pain.
After a few days or weeks your body has recovered and you are having a good day, so you increase your activity as before.
That's the boom and bust cycle. It's not good for you in the long term.
Here's a video from Tame My Pain that explains the whole cycle and how you can break the cycle.
Have you gotten into the boom bust pain cycle? If so, how did you get out of it?
Image used with kind permission of Michele Di Trani