Theresa: Welcome back to Living the Good Life, the podcast where we talk about rebuilding a life after change, the kind of change that shifts your energy, your identity, your body, or your sense of what’s possible. This is a short overview of what we discussed. We talked about several types of medical issues, especially that drain your energy. I feel relieved that I do not have something where my mitochondria doesn’t convert ATP to energy or an autoimmune disease, although I have been suspected of having one, even though I have some of the symptoms and blood test results that might indicate that. But just to get you up to snuff, we basically talked about how difficult it is for some people to make it through the day. We use spoons as an example of a type of energy currency. Robert: And we talked about where that whole idea came from. It started in 2003 when an advocate for lupus decided she needed a practical way to demonstrate to a friend how her energy allotment worked every day. Theresa: And she used spoons because she was in a diner and that was an easy way to explain. So one thing that we thought about, and this applies to travel because we will be talking about how the spoon theory applies to your travel, is that, I don’t want to say in the old days, but when we were both younger, people used to collect souvenir spoons every time they traveled. Robert: And when we took a trip, we were sometimes asked by people who were collectors to see if we could find a spoon from a particular location. Theresa: And we were thinking about that. And because we don’t go to souvenir shops very often, we were wondering. So let us know if people do still collect spoons. People put them in wooden cases and you’d see them hanging on a wall in their homes. Robert: And they’d show off their new spoons that they had just gotten from a trip or from a friend. Theresa: And then we realized also when we were younger, when we had our kids, it was pretty common for somebody to buy a spoon for the newborns. Robert: Usually a silver spoon. Theresa: Usually a silver spoon. I think we may still have one. They tarnish because they’re silver. Maybe that’s something that looks into the future about spoons. Keep track of your energy. Robert: We will give a few examples of people and how they allocate their spoons each day. And it’s kind of an interesting way that you decide how many spoons you’re going to commit each day to certain activities. Theresa: And it’s really beneficial to plan your spoon usage for traveling. Even if you don’t have a chronic disease, it’s still good because honestly travel can be very exhausting. And let’s explicitly define the word baseline because it is vital. So in clinical terms, your baseline is the amount of activity you can engage in daily without triggering a flare-up or post-exertional crash. Finding your baseline is the prerequisite for figuring out exactly how many spoons you have to work with each day. Robert: Let’s look at how someone actually calculates and allocates their spoons in real life. It isn’t a static math problem because unlike a regular bank account, your initial balance changes every morning. Theresa: Oh that sounds like if you’ve invested in the stock market, right? So let’s create a comparison to illustrate how wildly a spoon budget can fluctuate based on different body disruptions. We’ll look at three distinct profiles. A healthy individual, someone with an auto-inflammatory condition like lupus, and someone with a profound neuro-immune disruption like ME-CFS. So we’re going to compare the spoons that different people use. We have the healthy person, somebody with lupus or some kind of joint inflammation, and then somebody with the ME-CFS profile. And just to remind you that’s basically mitochondrial failure. So the first thing you do in the morning is wake up and cry. Robert: Now the healthy individual has a healthy budget of lots and lots of spoons and it costs them zero spoons. They’ve had a nice restorative sleep. Theresa: The person with lupus might take two spoons because they have morning stiffness and joint pain. Robert: The individual with ME-CFS has had an unrefreshing sleep. They have severe PEM on waking and it’s costing them four spoons. Theresa: So they have a pretty fair deficit, right? Robert: Start. Yes. Theresa: When they wake up. So then they’re showering and hair care. Robert: And the healthy individual, it’s cost them zero spoons. Theresa: The lupus person, due to their muscle soreness, they have lost one spoon. Robert: The individual with mitochondrial failure, the ME-CFS, is going to suffer some orthostatic intolerance from the heat of a shower and that’s going to cost them three spoons. Theresa: And then there’s a commute to the office or the workplace. Robert: Healthy individual has done this routinely. No problems. Cost them zero spoons. Theresa: Person with lupus is driving tension. That costs them one spoon. Robert: The individual with ME-CFS, they’re going to have a cognitive load of traffic navigation. It’s going to cost them two spoons. Theresa: Now say any of these people do sustained computer work and we’ll say that’s about three hours. Robert: The healthy individual is going to have to pay one spoon for the mental effort. Theresa: The person with lupus may have ergonomic strain on their joints and that’s a cost of two spoons. Robert: The individual with ME-CFS is going to be experiencing some brain fog, some sensory processing drain, and it’s going to cost them four spoons. Theresa: And then everybody needs to have food, so grocery shopping. Robert: Healthy individual is going to pay one spoon because it was a little bit time-consuming. Theresa: And the person with lupus, the store will have concrete floors, they’ll have to carry their bag because they’ll have to navigate the aisles and the people in the aisles. That will cost them three spoons. Robert: And finally, the individual with the ME-CFS is going to have a severe neurological crash triggered by this activity and it’s going to cost them five spoons. Now you’ll see that there’s a stark contrast between these activities and the sum of the number of spoons that the day has cost them so far. For a healthy person, that entire sequence costs maybe two, three spoons out of an abundant reserve. For someone with ME-CFS, the same sequence costs 18 spoons. They are deep in biological debt before dinner is even on the table. And this chart will be added to the show notes. Theresa: So how do you actually decide on your spoon usage? It’s different for everybody. You have to run a proactive daily audit. Spoonies use a strategy called activity aggregation scoring. You don’t just look at the physical act, you break it down into four distinct cost categories. First is the physical cost. Does it require standing, lifting, or walking? Next is cognitive cost. Does it require intense decision making, tracking details, or processing fast-moving information? There’s also a sensory cost. Is there bright fluorescent lighting, loud background noise, or a crowded environment? And the fourth is the emotional cost. Does it involve high stakes interactions, conflict, or masking symptoms to appear healthy? Robert: If an activity scores high across multiple categories, like attending a loud stressful professional meeting, it’s an automatic heavy spoon task. You cannot pair it with another heavy spoon task on the same day. If you choose to borrow spoons from the next day, you do so knowing you are triggering an intentional mandatory rest period afterward. Theresa: Okay, let’s get practical. How do you actually use spoon theory in daily life? Robert: First, you figure out your baseline. Ask yourself, on an average day, how many spoons do I realistically have? What tasks drain me the most? What tasks give me spoons back? What tasks are non-negotiable? What tasks can be postponed, delegated, or simplified? Theresa: Then you need to categorize your activities. For example, low spoon tasks include brushing teeth, microwaving food, or sending a text. And I got better at sending a text, but that used to be about my daily spoon limit. Medium spoon tasks are showering, cooking, errands, and socializing. High spoon tasks are travel, cleaning the house, hosting guests, and going to medical appointments. Robert: And here’s the important part. Spoon theory is flexible. Your count changes based on sleep quality, pain levels, stress, hormones, weather, sensory load, emotional labor, illness flare-ups. Theresa: So you can check in with yourself each morning. How many spoons do I have today? And then you try to plan accordingly. Because we all know sometimes we wake up feeling energetic and crash about an hour later. So your spoon necessity or your spoon quantity changes on a daily basis. So how can we apply the spoon theory to travel? Travel is one of the most high stakes, high energy scenarios imaginable. That’s due to travel planning, everything involved in traveling. It’s a notorious spoon killer. It’s a shifting environment filled with sensory overload, unpredictable physical demands, and disrupted schedules. Robert: But having a disability or chronic illness doesn’t mean you can’t travel. It means you have to build a highly tactical, spoon-centric itinerary. Let’s walk through planning a trip using energy conservation metrics. Theresa: Step one happens long before you get to the airport. You need an airport buffer protocol. Most people try to optimize for speed. A spoonie must optimize for energy preservation. This means booking flights at times that preserve your sleep quality. No 5 a.m. flights that require waking up at 2 a.m. That instantly bankrupts your baseline. It’s a difficult choice when a later flight could in fact bankrupt you. And probably with everything you need to go through at the airport, you should arrive at the airport earlier than most people might. Robert: It also means swallowing your pride and requesting TSA cares or airport wheelchair assistance. Many folks think, well, I can technically walk 500 yards, so I shouldn’t have to take a wheelchair. But an OT will tell you walking those 500 yards on hard airport floors while carrying a bag will cost you four spoons. If you sit in the wheelchair, it costs you zero. Save those four spoons so you can actually enjoy your destination when you land. Theresa: And that’s really good advice. I think it’s hard for those of us who used to be able to pretend they were practicing for a marathon while trying to make a gate a mile away from where they got off the previous plane have a little bit of, I don’t know if you call it embarrassment, about riding or taking a wheelchair. But it definitely does reduce stress. Robert: It also helps you avoid all the other people who are frantically trying to reach a flight carrying their roller bags and not really paying attention to other people. Theresa: And there are so many people who aren’t paying attention. I got knocked enough when I wasn’t in a wheelchair, but pusher of the wheelchair has to yell at people to get out of the way because a lot of people just don’t look. And then there’s like the coolest wheelchair I’ve been in was in Seattle. We usually transfer there, not initially board there. They have remotely controlled wheelchairs and they stop when somebody’s in the way and it takes you to your port. That’s really interesting. I might have a picture that I could put up on the website. Robert: And it also returns to its base after it drops you off. Theresa: Right. And they said they’ve had those for several years now. So back to step two of travel. Use the wheelchair. Take advantage of any assistance you can get at airport. Step two is to have a travel cushion day. Say you’re flying to Europe. It’s a long haul. Most people suffer jet lag and you might be excited. Just like on those days they say you wake up energetic, but your energy quickly fades. So just have a day where you take it easy so that you can recoup. You can still do some things, but you know, don’t kill yourself and go to a meeting. And I know some people who work do have to do that, but if it’s a vacation, don’t do that. So try not to schedule a lot of activities or any activities on the day you arrive and even the day after. The day after must be a designated cushion day spent entirely in the hotel room, resting, rehydrating and resetting your autonomic nervous system. Think of it as paying back the time alone you took out to survive the flight. Robert: Step three is the one major event rule. A standard tourist itinerary says morning museum, afternoon walking tour, evening dinner show. A spoon managed itinerary allows for one anchor event per day. The spoon managed day structure morning, low energy breakfast in the room and medication stabilization. Midday is the anchor event. The museum tour utilizing rented motorized scooters if available. Late afternoon mandatory three hour horizontal rest period in dark room to drop the heart rate and reduce sensory input. Low key dinner nearby or room service if the anchor event ran long. Theresa: And finally, you have to build environmental redundancies. Choose hotels based on proximity to your anchor events to avoid long transit times. Ensure the room has effective climate control, especially for conditions like multiple sclerosis or POTS or recovering from prostate cancer where heat intolerance can trigger immediate relapses or discomfort. Robert: When you plan this way, travel stops being a gamble with your health and becomes a controlling the spoons instead of letting your environment strip them away from you. Theresa: You can see that travel is a high spoon activity. That’s even if it’s fun travel, even easy travel. So plan with spoons in mind. And one thing that I don’t know that we mentioned is be sure that your assistant or your caregiver also plans the same way as you do. So here’s a few basic suggestions to help you plan. One good thing is you know in advance that travel is always draining and it really takes a lot of energy. So your pre-trip spoon budgeting. You should try to estimate how many spoons during the trip and the number of spoons every day varies and that’s kind of a tricky part because you can’t always predict when you might have some kind of incident or problem or get really tired. But try to estimate how many you’ll have. Identify the high spoon days and that could be things like your flights, making a tight connection which try to avoid that always if at all possible because that’s very stressful. If you’re doing any long drives especially after having flown for hours and then any tours that you’re going to be taking be sure they’re not scheduled too tightly with each other or during the hottest part of the day or anything like that or any that are a fast pace and there are some tours specifically for people with body disruptions and then be sure to build in recovery days or at least a part of the day to recover. To reduce your spoon drain choose non-stop flights which is easier said than done especially if you live in a small community like we do. We always have to make at least one connection. Book accessible lodging. I have mentioned before I believe that we really like apartment style hotels especially if we’ll be in one place for several days and it’s so nice not to have to change hotels every day because that’s very stressful. Use mobility aids even if you don’t always need them because if you take them you may not need them. Pre-book your transportation if possible and avoid tight schedules. Robert: Build spoon friendly routines. Morning check-ins. How many spoons today? Adjust plans based on your energy. Keep meals simple. Use sensory tools. Ear plugs. Sunglasses. Theresa: Stimulation toys and even like eye shades if you especially if you take a rest during the day. Robert: Communicate your spoon needs. Tell travel companions your limits. Use spoon theory language. I only have three spoons left today. Theresa: Also plan for flare-ups. Have a backup activity which could mean rest and know where to rest in case you have a flare-up and just have to chill out for a little bit or you know get back so you can move to your hotel. Keep your meds accessible. Allow guilt-free downtime. Robert: So with this all in mind travel can become doable and enjoyable when you stop forcing yourself to operate like someone with unlimited spoons. Theresa: So as someone who thought she had unlimited spoons in the past it’s very difficult to ration your spoons for the day and you never know when you’ll be back in a place and you have to choose what to do, what’s safe for you, what keeps you healthy, what keeps you from falling or crashing. So that’s really the spoon theory. It’s a simple metaphor that opens the door to understanding, compassion, and better planning. And there are groups online and I’ll see if I can find the link to those groups. Robert: And whether you’re living with chronic illness, neurodivergence, disability, or just burnout, spoon theory gives you permission to honor your energy level, to plan realistically, communicate clearly, and to travel in a way that supports your body instead of fighting it. Theresa: And I think this can really work for any person. Whether you have some kind of body disruption or not, there’s always stressors in your life as well. So consider it. Maybe that your assistant will and should consider it, as I’m sure my assistant in Seeing Eye Guy does all the time. Except for when he needs his assistant. So the next time someone tells you they don’t have the spoons for something, remember, it’s an invitation to understand a hidden economy of energy. Thanks for listening. We’ll catch up with you next week on our next episode. Keep living the good life. Robert: The information shared in this podcast is for general educational and entertainment purposes only. We love sharing our insights, but please remember, this content does not constitute medical, health, or professional advice. Every body and every situation is unique. You should always consult with a qualified medical specialist or healthcare professional before starting any new program, making lifestyle changes, or acting on any information you hear today. Your health is your responsibility, so let’s keep it safe. (Transcribed by TurboScribe.)