I would ask him to teach me. He would, but he always seemed to change the rules around just as I was getting the hang of it.
I threw a fit because it was so unfair.
There are situations in life just like that older brother’s “teaching” style. The rules change just as you get the hang of something, or someone changes the rules before you can.
We collectively have fits because life is so unfair. Living with pain, chronic illness and a whole host of other issues isn’t a fair game.
But what happens if we change the rules as they apply to how we handle these? What if I can change the rules preemptively or at least soon enough to skip the pity party about how unfair it all is?
I have decided to do just that. I have decided this week will be different from the previous two. I will create my own rules of dealing with the decrease in intrathecal baclofen.
It is no longer ok that my life is put on hold while I wait the 24-48 (or 56) hours for each decrease to take effect. It wasn’t ok that I was buying in bulk and doing tasks in the days before either, so I changed that. I changed it to be on my terms, which was an improvement.
Now I change the rules even more. I go back to doing as much of my “normal” schedule as is safely possible while I experience whatever the decrease has in store.
It is no longer unfair that I just get used to one level of mobility before moving to another. It is very fair. It means I have more time to rehabilitate each loss.
It is a new week. The game hasn’t changed this week. The rules I intend to follow will not be my rules from earlier weeks, however.
What rules can you change so we can compare notes?
- Dogs, Babies and Baclofen (thetawny.wordpress.com)
- 35%, Clocks and Docs (thetawny.wordpress.com)
- Climbing the Toilet Paper Tower (thetawny.wordpress.com)
- Summing it up Sunday #2 (thetawny.wordpress.com)