Sometimes with a life limiting illness we think it’s always the same, day in and day out. But in truth symptoms can vary day to day or even hour to hour. For Karma, there have been times in her life when it seems everything came to the perfect storm and even her daily routine of limited capacity crawls to a stop and she crashes hard into what she euphemistically calls a POTShole. Symptoms are all intensified, standing is off the table, eating becomes very difficult as is retaining sufficient fluids. The hyperadrenergic flares come in waves instead of few and far between. And sadly the POTSholes of her past seem to last anywhere from 2-4 months (and counting, as she is currently still recovering from a bad period that started at the end of February (2022).
As best she could, Karma would try and reference her journals (and forum posts) dating back over 15 years to try and remember if there was anything she learned from the past that would help her get back on her feet .. or at least propped up and resting comfortably. Problem is, these periods tend to be so intense that they are quickly put “out-of-mind” with the hope of course that it won’t ever happen again. So this time, the family decided we’d try and make some notes, recipes or what not that seemed to help so if ever any one of us (sad truth) ever needed to resource what helped Grandma in the summer of 2022 we would have a starting point.
These aren’t recipes per se, so we aren’t including them in the main section of our food blog, but rather a FORK were we can at least get a glimpse of the things that made life a bit easier during a most difficult time.
FOODS:
Eating every 2-3 hours even if it is just the smallest amount if that is all that is tolerated, seems really helpful. And having a handful or “easy” foods that family could quickly put together was a big help .. since sadly they were probably also over extended given the extra help Karma needed. There’s a big section needed on self-care for caregivers who are also chronically ill, but that will be another not-so-shaggy-dog-story for another time.
- Soy Yogurt
- Morningstar links (can be microwaved quickly)
- Whole grain bread with Butter
- Dave’s Killer Bagels have a whopping 11 grams of protein
- Ramen … dropping an egg in while it’s boiling in the microwave is easy
- Whole grain porridge can be microwaved (5 minutes on, 5 minutes off .. repeat four times)
- Watermelon with Salt
- Papaya with Salt (and lemon) .. can be frozen
- Salted Lemon(aid) with more salt than sugar
- Whole Milk (with Motherwort in the morning for heel drops)
- Cheese and Crackers
- Hard Boiled Egg
- Canned Peas or Canned Green Beans (good source for sodium)
There were some typically safe foods that caused problems during the height of the storm so Karma put those out of the rotation for a period of time. But would gradually try and re-introduce them as she felt more stable. Things like rice (brown or white) was a struggle to digest without exacerbating symptoms in the first couple of months but as time went on and some of the systems stabilized she brought it back in her rotation. It wasn’t only about finding foods that were tolerated, but finding ways to do meal prep with one prepper down was also a consideration. There were some meals where we absolutely planned on Pizza Delivery and others we ordered family sized frozen food. It’s easy to forget, but all this happened two+ years into the pandemic. When everyone’s spoons were already in low supply. Some nights Karma would join Monks or Tricia on her camera so that she could still “contribute” to meal prep from her room. Gradually she has begun to make short trips back to the kitchen and re-accustom herself with meal prepping on the floor. But that’s a not-so-shaggy-dog-story for another day.
There are of course a cadre of Non-Food Reminders that we’ll have to write down one day like Magnesium, Motherwort, Vit C, Cut off SWEATS after Shower and remember that it’s “normal” for the post micturate HR to soar to 140+ and you can pretty much expect what’s gonna happen right after when you lay down 
. But even these tips seem transient as everything changes and selective amnesia sets in.
Everyone’s go-to list will be different and odds are even Karma’s foods that helped will look different (if there is a) next go around. But each of us want to believe there is at least some perceived control on the one hand and on the other hand feel like we are helping in a way that is meaningful. Hopefully these notes will be a little of both.
Karma is so deeply grateful to everyone’s patience, understanding and extraordinary efforts to help her manage (survive) a most difficult period in her dance with dysautonomia.
