In my many long years in this perpetual struggle I have found many things to help navigate this difficulty:
1. I work with my family in a small business we created, so I have a lot of flexibility. I created a work-flow circle and I work on the “circle” of tasks everyday when i am well enough, for as many hours as I am well enough. Then the next day and time I am able to work, I just pick back up where I was previously on the circle. It takes a lot of disciple and patience, but I do stay really rather productive this way.
2. I have “open-times” for friends/family to come by and visit, on only particular days and time of day when I know I am typically at my best. However, we set plans and everyone is always aware that I may cancel, even at the last minute if I am too un-well, and they are aware that sometimes visits may require me in my bed or on the couch if I am very un-well, and there is always a pre-set max time to visit, as I try to balance my energy.
3. My partner and I have set 2 nights per week to spend time together as “us” time and we always plan a very low-energy activity like a movie with couch-cuddling, and then try for something more engaging, energy demanding on the other night, like painting, sitting outside at our fire-pit, cooking a meal together, going for a walk in our neighborhood. We always plan to make the plans the afternoon of the date-night though to best accommodate my current state of health and wellness so that the time spent together can be pleasant for us both, but also maximize the days I do have more energy and ability than others.
4. I stager my to-2-list throughout the day and do a small amount of things everyday versus try to get a lot done of one thing on a particular day. I do a few house tasks everyday, some exercise, and a bit of computer work everyday, this way I don’t fall behind on anything, and I just do what I can when I can, even if it is only 5 minutes of dishes then I sit back down, or 30 minutes of computer work, then I get up and do some stretching.
I would love to hear anything you have found helpful in managing unpredictability in your chronic illness?
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