Getting as much done in a day as I can on good days has been my mantra of late. Make shopping lists organized by store. Prioritize errands and organize them by regions of the moderately-sized city in which we live for best travel efficiency. Put Amazon items on my Wish List for bulk orders about twice per month. Put appointments, key things to do/questions to ask at respective appointments, and errands on the calendar app in my phone so I will always have it with me. Record “to do” items on the calendar as well then just move them to another day when sickness takes over and everything needs to change. Make sure to record the places that I went, dates/duration of major convulsive episodes, start/stopping of new treatments, and aberrations in sleep habits to track this serious illness for trending. Use the note function in the glucose meter when compelled to take blood sugar levels. And stage lists, paperwork/medical orders, supplies, lunch bag, water, etc. by the front door so I don’t forget anything when I can finally get myself out the door. Works for me!
It’s no wonder that I am exhausted after a day with a few appointments and errands completed in this way. Marked fatigue with a difficulty functioning follows even if the first appointment isn’t until after 1:00 pm in the afternoon! Still I would really rather block off parts of days and push through, even if it means sitting in a parking lot somewhere resting between destinations for up to an hour, than to have 1 or 2 commitments every single day of the week. I sit a lot in my truck between destinations: eating a snack, sipping some water, checking my lists or phone calendar, and getting my head together (i.e. if the environment I had just left was ridden with noxious environmental stimuli that is still difficult for my brain to process). All of this completed with some safety measures in place of course.
I figure that I can always rest the next day . . . or the next morning at least. Scheduling my days this way is a form of chronic illness survival, especially when you have to come home, change clothes, shower, and clean everything purchased after every trip. (We still must practice a fair level of extreme avoidance due to my ongoing sensitivities.) Perhaps if I were my own occupational therapist, I might advise a better strategy of energy conservation and pacing. Oh dear, another example of the therapist not following her own advice!
All bets are off as they say, the next day, if there is a major convulsive episode the night beforehand. Appointments get cancelled and re-scheduled. To Do List items get moved to another day. A call is made when I can function, to my hubby-dear to pick up critical items when needed. And if the difficulties last for a few days then I am grateful to be able to use our local grocery store’s shopping and/or delivery services. Sometimes supplements and compounded medications can be sent over in the mail. These are wonderful services that really help on days when I am more home-bound: as recent as 2 weeks ago.
Things are really hard when medical appointments fall two days in a row; these meetings are always stressful for me anyways. Things are equally as hard when illness factors worsen around special occasions and holidays: when things simply cannot be rescheduled. This happened today after a wretched convulsive episode last night. I had planned on preparing a meal and some treats for family members who were visiting and it was all I could do to pray my way through the completion of the project. Gratefully my beloved husband was willing to prepare part of it, but sadly after I awkwardly blurted some speech that was a little too pressured, a little too much reflecting the exhaustion I had not yet yielded to the strength of my Lord’s. I had to apologize. Eventually, I got outside in the milder Winter weather of late and for the first time in the three days that I had hoped to do the same. The Pup and I came home then I finished my tasks (’cause there’s always another thing or two to do before you can sit on the couch for a couple of hours and REST!!!).
Probably a few hours too late to be as effective, I did rest. Even the editing volunteer work on the computer got done. And a whole lot of food got consumed while watching cooking shows on Public Television. (We don’t have cable TV.) Such is life in survival mode I guess. The balancing act begins again tomorrow with a family Christmas gathering at a local cafe. It all reminds me of the Capitol One Bank commercial here in the States where the viking character asks his slain comrade or opponent, “what’s in your wallet?” I always hope that it will be fuller on my next day . . . Tomorrow we shall see! JJ