Q&A: What is POTS Luck?
Our Almost Annual, Adapted, Self-safe Covered Dish & More
Go to Q&A IndexPOTS Luck in person: Dec 19, 2015
The Northern Virginia ME/CFS, FMS & OI Support Group, aka CFSnova, holds an annual eat together meeting, usually the 3rd Saturday of the month, in December, at 2 pm, at the Sully Governmental Center, in Room 1, 4900 Stonecroft Blvd, Chantilly, VA 20151. Directions.
Our POTS Luck Social Event
We like to call our pot luck gathering "POTS Luck" as a play-on-words that acknowledges the Orthostatic Intolerance (OI) that affects so many of us with chronic fatigue, chronic pain, chronic Lyme or other infections. POTS is the kind of OI where when one stands still too long, one overheats, feels desperate to move or irritable, among other things. Circulation struggles and then we do. Think of the symptoms that appear when waiting on line after shopping. Ugh, POTS style. Standing too long could be less than a minute, 20 minutes. It depends.
We gently suggest that folks not tire themselves out further by cooking or buying food for everyone else. We understand that providing food can feel fulfilling for some folks and exhausting for others. We don't know how many people will attend, and most people in our group have food sensitivities and allergies. There's no guarantee that anyone else at the meeting could eat something that someone else cooked. That is why we suggest everyone bring something they can eat themselves. A self-safe, self-focused, self-nourishing, self-caring covered dish event.
We encourage lots of sitting at a POTS Luck, with feet up on chairs, while consuming the non-symptom producing food dishes they brought and while dishing helpful conversation with others who understand about ME/CFS, OI, Fibromyalgia Syndrome, and similar syndromes. Bonuses include trying surplus foods offered by others that also look pretty non-symptom producing and enjoyable.
Our POTS Luck party has been partially and entirely catered some years, but we usually return to the idea of individuals bringing a self caring covered dish. We've seen people overdo it, wipe out either way. We are always learning from what happens.
The term party is used loosely. We might bring music for the background and then be too sensitive or cognitively impaired to keep it on. There is no dancing. It is allowed. No one can manage it for more than a few steps before needing to sit or grab a wall.
If one brings enough to share with others, great. If not, that's great, too. Really!
It's also fine to not bring any food. Just bring yourself. Conversing with, just listening to understanding peers is nourishing. Some folks can't even be around the smells of food and might have to sit one table away. That's something we get.
As always, we encourage attendees to bring things that may make them more comfortable, such as pillows, seat cushions, sweaters, floor mats, portable fans and more.
*We ask that all attendees refrain from wearing scented products.* We have members (including leaders) who will become ill if exposed to scented products. Thank you. Thank you. Thank you.
The POTS Luck Jackpot
CFSnova's adapted pot luck for the last many years was designed so it is mindful of conditions and safer in terms of not making us worse than most holiday parties for our crowd. Some have had to give up all holiday type events with people who don't get it and we may be their only hope for an outing that doesn't cause overwhelming problems.
We call it a POTS luck in part to bring luck to our not setting off POTS or CFS or FMS or XYZ symptoms. At a POTS Luck, everyone who wanted to could bring a meal or snack that they can each eat with no extra symptoms, and more of it to share - with a list of ingredients - if they have the energy and financial resources.
A strange thing happened over time at our POTS Lucks. People in our group, feeling safe and uplifted to be at a social gathering where their symptoms and sensitivities are honored and accepted, tend to try most of the dishes that appear. Even the spicy chocolate covered nuts. Known ingredient problems and caution are thrown to the wind.
And, very interestingly, it works out much better than when being similarly adventuresome at home alone or with "regular life" people! That says something rather encouraging about how acceptance and support can expand our food selections!! Attitude, environment, who is company may not be at the root of symptoms, but they matter. We can use that to put more energy in the healing / living with more comfort column.
We also saw that if someone did get a reaction, they thought it more worth it or easier to cope with any consequences. It was easier to take responsibility and remember the fun.
So, another POTS Luck approach is to bring a safe dish and a potentially little bit more wild ride dish to the POTS Luck. If anyone does feel too affected to drive home, there are cabs to be called. We can be creative finding coping for other issues. If nothing bad happens, we can notice and celebrate that, too.
If you must be strict, we'll honor and respect that greatly.
If you must be free, so be that. We'll watch and learn together.
If you just want to be free but that doesn't feel safe, don't do it yet. Wait.
In honoring what must be, and how that will most likely be different for each attendee in each year, we might just enjoy a covered dish party even at our most non-functional and hit the POTS Luck Jackpot of healing possibilities.
Disclaimer: CFS Nova contributors are volunteers with the experience of puzzling syndromes with no intention to act as medical, counseling, or legal professionals. Please use or ignore our content at your own risk and for your own reward. Seek qualified practitioners for diagnosis, treatment, and legal matters.