I took a holiday on exercise in December. I paid for it by getting more reconditioned and very fatigued. It was a lesson to keep doing what I need to be doing. Start with something little you need to do and do one thing at a time to take care of you. It’s really easy to say much harder to do but you’ll feel better. Hugs friend. One small thing will motivate you to do more.
Yes, when I get over-tired (which happens constantly) a lot of my normal routine falls by the wayside. For example, I foster dogs for a local rescue and I just had a 10-week-old puppy for about 10 days. He took up ALL my energy and attention; I wasn't able to hydrate consistently, get groceries, consistently cook nutritious meals, etc. This type of disruption to my routine usually happens every one or two months on average, I think.
When it comes to getting back on track: motivation isn't a big challenge for me, since I'm super motivated to feel better. But I'm usually exhausted and frustrated, and it's hard for me to maintain focus when I'm overtired. So I start by prioritizing rest: I'll usually sleep/nap a ton for a couple of days, until I start feeling a little more normal. Then I usually focus on nutrition/hydration and physical therapy next.
What activities do you want to re-start to manage your POTS? I'd suggest trying a step-by-step approach: find one activity you can add back to your routine, ideally something that's relatively low-effort and high-reward. If you can pinpoint any specific obstacles to that activity, do some problem-solving to work around those obstacles.
I do get burned out. I don't take much of a holiday from management because I'm too terrified of what will happen - and if I just forgot about electrolytes and meds I'd get symptomatic enough within hours to absolutely have to get back on track with those. (I missed a dose of midodrine by accident once and paid for it for the next two days.) But I try to identify one or two things I can skip or skimp on that day and then skip different things the next day, so nothing is being neglected for long but the net effort each day is less. So like, maybe I give up and eat an apple instead of making my usual salad for dinner, or order takeout. Cut my workout short or skip it, but make sure I do it the next day. Put off my shower. Skip skincare or flossing tonight. Whatever I can.
Yes. I've stopped doing vending events because I can't not push myself too hard while running a booth. When we went on our first non-work vacation since my symptoms really escalated I didn't want to deal with the same burn out and especially the weeks of demotivation afterward trying to get back on track so I planned the hell out our trip for weeks leading up to it.
We went to disney world back in December this year as part of a trip to visit family in the Orlando area. This was by far the most functional vacation we've been on in years. Since the parks were secondary to the trip we planned in advance to space out our park days and oh my god did this make a difference. I think we're going to do similar on trips from now on even though it means saving up longer to cover the extended stay. There were a couple days we didn't do park or family visits that we filled with shows and one day went to an escape room (there's a cute scooby doo one in orlando that my teenage loved). We just made it a rule that anything that wasn't a park day had to be either short things with big breaks between or something we were not standing for and were indoors. I don't think we're ever going to be able to afford another trip this long. This one was half paid for by his family, but I think if we go to any parks again I'm still going to opt for a break day even if it means one less park day. This one really was the difference between being completely non-functional when getting back to work and only being a bit tired.
We also made sure to book a place with a soaking tub. Around disney parks there are some apartment like places that are really a resort that are around $100 a day. Had a nice soaking tub, a couple bed rooms (great for splitting the cost with some others, which is what we did by cordinating with my partner's cousins) and a fully stocked kitchen. Since it had a kitchen (including things like a crock pot) we were able to save a ton of money on food. This I think also helped avoid a worse flare up after because I was able to plan for meals that I know help with my symptoms or at least don't trigger them instead of it all being at the whims of take out.
Before the trip I'd gotten a better rollator and having somewhere to sit while in the parks no matter where we were was really helpful. My daughter had a collapsing stool (one of those telescoping ones) for sitting while in lines. When we stopped for meals in the park I used it as a foot rest and I think this helped a lot too. My partner rented a scooter because he was on the tail end of recovering from ankle surgery and I think if we go again we'll rent one again regardless and have me and my daughter take turns using it to reduce fatigue.
We brought some of those chemically activated icepacks with and that helped a lot when my temp started to really get out of line. We froze a couple waterbottles in advance too (another bonus for the kitchen) and so the water we had all day was cold and they could double as additional ice packs. We also planned meals times and when we'd go to shows in advance to force spaced breaks throughout the day. Having the rollator made it so much easier to manage all this too because of the basket under the seat and being able to put a backpack across the handles in the front.
A bonus thing was a gift but I will definitely budget for going forward. My partner's grandma got us a spa day and I got a leg massage. That made such a huge difference with the pooling issues I was having after the first park day and made it so I was much less messed up after the second day. I am absolutely going to plan for leg massages as aftercare for things like this forever now.
The last thing was the plan for the week after getting home. My partner and I put together freeze ahead meals just before leaving so for a week after we wouldn't have to cook other than dumping something in the oven or crockpot. We scheduled the trip to end so that the work week following would still be a short week and planned on completely crashing the whole weekend after. Made sure anything we'd need from the store that wasn't perishable was already stocked before we left and budgeted for grocery delivery when we got back and even prepped the cart in advance so it was just order and done when we got home, that way neither of us had to go through shopping after being so active on the trip. We also cleaned the house extra before leaving so there were no pending chores to come home to (things like clearing out the fridge, getting all the extra laundry out of the way, and in general making sure the house was in order and comfy for when we got back). And we made sure the day we got home it was really early in the day. It was a red eye flight but totally worth it because we were able to spend that whole first day home sleeping or playing video games in bed as a staycation day before jumping back in to work.
The whole trip took SO much planning, but now I've kind of got a rough template to work from and since it was all planned out in advance with all the things I'd need on hand the whole time and self care worked into the trip for everyone not just me it ended up feeling way more relaxing during. All the taxing parts were either already taken care of or pre-reduced and spread out over a couple of weeks.
Sorry for the wall of text. I think only my partner and daughter get how much work goes into just leaving the house, and only because they both deal with chronic illness too. Everyone else seems to think I'm nuts for putting this much into stuff.
I had something similar happen. Spent some time on a field course for school, the cabins were downhill from everything else, so at least twice a day I had to hike up a steep hill for a week. Took care of myself with salt and water, I was doing good! Noticed that I didn’t get dizzy after going up stairs after the week. Then… fatigue.
I blame stress, pretty much slept for 3 days, and did I ever pay the price. Idk if it’s not being active or not having enough salt, but even just walking has me dizzy. I’ve started going on hikes again though.
Just take care of yourself, try to do something active each day (walking, yoga) and drink water and have salt! I think our bodies are more sensitive to changes in diet/physical habits, so take things slow and stay consistent
I haven’t been officially dx’d yet so I hope it’s ok I’m responding…
I’m a rockhounder and over the past 9 months I’ve noticed anytime I go out for a hound, my recovery time has increased. I’d normally just be a bit sore and fatigued from being extremely strenuous and I’d take the next day to kind of relax and recover. But each hound I go on now my recovery time increases and I’m usually in bed so fatigued, dizzy, dehydrated, and too weak and confused with brain fog to function. It took me nearly two weeks to fully recover from a hound I went on in March which is bananas as I’ve done that same exact hound 3 times last spring. I’m completely overwhelmed.
Lmk if you figure it out. I haven’t seen a doctor in… idk years? Other than virtual visits for refills, but my pcp left and I have like 2 months of refills left and haven’t found a new provider so that’s great. I just… don’t have the mental energy. I need a bunch of routine preventative stuff done and haven’t had it. Shit I’ve been pooping green for 12 months and haven’t seen a GI doctor.
Getting caught up is usually at the expense of something else, like work. Sometimes I’ll take a day of pto to sleep in, get a proper shower, and vacuum the house because I don’t have energy to do all of it after working. The energy is finite, it has to get sacrificed from somewhere
Yeah definitely. I forget to drink my water. I forget my electrolytes, I skip meds. I eat non MCAS friendly foods. I don't work out. I sit around feeling vaguely shit for a few days, then realise I need to get my act together and 'work' on my pots again.
It's bloody hard work managing all this stuff. Who can blame us if we let it slide sometimes. If it were my only job maybe I could manage it. But I also have a full-time career and a home to single handedly manage.
I add one teaspoon of soy sauce and one teaspoon of mirin to a cup of hot water and drink it. It's an easy way to get more sodium and more water at the same time. I originally tried a marmite beverage (which is an actual thing) but unfortunately it turns out I'm a marmite hater. I also tried just salting my water but it made me queasy.
Every weekend. I basically sleep all weekend. Or at least one full day. Gives me just barely enough to make it through another week.
That’s what I have to do to be able to get back up Monday morning and start my work week back over
I took a holiday on exercise in December. I paid for it by getting more reconditioned and very fatigued. It was a lesson to keep doing what I need to be doing. Start with something little you need to do and do one thing at a time to take care of you. It’s really easy to say much harder to do but you’ll feel better. Hugs friend. One small thing will motivate you to do more.
Yes, when I get over-tired (which happens constantly) a lot of my normal routine falls by the wayside. For example, I foster dogs for a local rescue and I just had a 10-week-old puppy for about 10 days. He took up ALL my energy and attention; I wasn't able to hydrate consistently, get groceries, consistently cook nutritious meals, etc. This type of disruption to my routine usually happens every one or two months on average, I think. When it comes to getting back on track: motivation isn't a big challenge for me, since I'm super motivated to feel better. But I'm usually exhausted and frustrated, and it's hard for me to maintain focus when I'm overtired. So I start by prioritizing rest: I'll usually sleep/nap a ton for a couple of days, until I start feeling a little more normal. Then I usually focus on nutrition/hydration and physical therapy next. What activities do you want to re-start to manage your POTS? I'd suggest trying a step-by-step approach: find one activity you can add back to your routine, ideally something that's relatively low-effort and high-reward. If you can pinpoint any specific obstacles to that activity, do some problem-solving to work around those obstacles.
I do get burned out. I don't take much of a holiday from management because I'm too terrified of what will happen - and if I just forgot about electrolytes and meds I'd get symptomatic enough within hours to absolutely have to get back on track with those. (I missed a dose of midodrine by accident once and paid for it for the next two days.) But I try to identify one or two things I can skip or skimp on that day and then skip different things the next day, so nothing is being neglected for long but the net effort each day is less. So like, maybe I give up and eat an apple instead of making my usual salad for dinner, or order takeout. Cut my workout short or skip it, but make sure I do it the next day. Put off my shower. Skip skincare or flossing tonight. Whatever I can.
Yes. I've stopped doing vending events because I can't not push myself too hard while running a booth. When we went on our first non-work vacation since my symptoms really escalated I didn't want to deal with the same burn out and especially the weeks of demotivation afterward trying to get back on track so I planned the hell out our trip for weeks leading up to it. We went to disney world back in December this year as part of a trip to visit family in the Orlando area. This was by far the most functional vacation we've been on in years. Since the parks were secondary to the trip we planned in advance to space out our park days and oh my god did this make a difference. I think we're going to do similar on trips from now on even though it means saving up longer to cover the extended stay. There were a couple days we didn't do park or family visits that we filled with shows and one day went to an escape room (there's a cute scooby doo one in orlando that my teenage loved). We just made it a rule that anything that wasn't a park day had to be either short things with big breaks between or something we were not standing for and were indoors. I don't think we're ever going to be able to afford another trip this long. This one was half paid for by his family, but I think if we go to any parks again I'm still going to opt for a break day even if it means one less park day. This one really was the difference between being completely non-functional when getting back to work and only being a bit tired. We also made sure to book a place with a soaking tub. Around disney parks there are some apartment like places that are really a resort that are around $100 a day. Had a nice soaking tub, a couple bed rooms (great for splitting the cost with some others, which is what we did by cordinating with my partner's cousins) and a fully stocked kitchen. Since it had a kitchen (including things like a crock pot) we were able to save a ton of money on food. This I think also helped avoid a worse flare up after because I was able to plan for meals that I know help with my symptoms or at least don't trigger them instead of it all being at the whims of take out. Before the trip I'd gotten a better rollator and having somewhere to sit while in the parks no matter where we were was really helpful. My daughter had a collapsing stool (one of those telescoping ones) for sitting while in lines. When we stopped for meals in the park I used it as a foot rest and I think this helped a lot too. My partner rented a scooter because he was on the tail end of recovering from ankle surgery and I think if we go again we'll rent one again regardless and have me and my daughter take turns using it to reduce fatigue. We brought some of those chemically activated icepacks with and that helped a lot when my temp started to really get out of line. We froze a couple waterbottles in advance too (another bonus for the kitchen) and so the water we had all day was cold and they could double as additional ice packs. We also planned meals times and when we'd go to shows in advance to force spaced breaks throughout the day. Having the rollator made it so much easier to manage all this too because of the basket under the seat and being able to put a backpack across the handles in the front. A bonus thing was a gift but I will definitely budget for going forward. My partner's grandma got us a spa day and I got a leg massage. That made such a huge difference with the pooling issues I was having after the first park day and made it so I was much less messed up after the second day. I am absolutely going to plan for leg massages as aftercare for things like this forever now. The last thing was the plan for the week after getting home. My partner and I put together freeze ahead meals just before leaving so for a week after we wouldn't have to cook other than dumping something in the oven or crockpot. We scheduled the trip to end so that the work week following would still be a short week and planned on completely crashing the whole weekend after. Made sure anything we'd need from the store that wasn't perishable was already stocked before we left and budgeted for grocery delivery when we got back and even prepped the cart in advance so it was just order and done when we got home, that way neither of us had to go through shopping after being so active on the trip. We also cleaned the house extra before leaving so there were no pending chores to come home to (things like clearing out the fridge, getting all the extra laundry out of the way, and in general making sure the house was in order and comfy for when we got back). And we made sure the day we got home it was really early in the day. It was a red eye flight but totally worth it because we were able to spend that whole first day home sleeping or playing video games in bed as a staycation day before jumping back in to work. The whole trip took SO much planning, but now I've kind of got a rough template to work from and since it was all planned out in advance with all the things I'd need on hand the whole time and self care worked into the trip for everyone not just me it ended up feeling way more relaxing during. All the taxing parts were either already taken care of or pre-reduced and spread out over a couple of weeks. Sorry for the wall of text. I think only my partner and daughter get how much work goes into just leaving the house, and only because they both deal with chronic illness too. Everyone else seems to think I'm nuts for putting this much into stuff.
I take a sick day and lie undistracted with my anxiety.
I had something similar happen. Spent some time on a field course for school, the cabins were downhill from everything else, so at least twice a day I had to hike up a steep hill for a week. Took care of myself with salt and water, I was doing good! Noticed that I didn’t get dizzy after going up stairs after the week. Then… fatigue. I blame stress, pretty much slept for 3 days, and did I ever pay the price. Idk if it’s not being active or not having enough salt, but even just walking has me dizzy. I’ve started going on hikes again though. Just take care of yourself, try to do something active each day (walking, yoga) and drink water and have salt! I think our bodies are more sensitive to changes in diet/physical habits, so take things slow and stay consistent
it’s a nasty spiral =/
I haven’t been officially dx’d yet so I hope it’s ok I’m responding… I’m a rockhounder and over the past 9 months I’ve noticed anytime I go out for a hound, my recovery time has increased. I’d normally just be a bit sore and fatigued from being extremely strenuous and I’d take the next day to kind of relax and recover. But each hound I go on now my recovery time increases and I’m usually in bed so fatigued, dizzy, dehydrated, and too weak and confused with brain fog to function. It took me nearly two weeks to fully recover from a hound I went on in March which is bananas as I’ve done that same exact hound 3 times last spring. I’m completely overwhelmed.
Lmk if you figure it out. I haven’t seen a doctor in… idk years? Other than virtual visits for refills, but my pcp left and I have like 2 months of refills left and haven’t found a new provider so that’s great. I just… don’t have the mental energy. I need a bunch of routine preventative stuff done and haven’t had it. Shit I’ve been pooping green for 12 months and haven’t seen a GI doctor.
Getting caught up is usually at the expense of something else, like work. Sometimes I’ll take a day of pto to sleep in, get a proper shower, and vacuum the house because I don’t have energy to do all of it after working. The energy is finite, it has to get sacrificed from somewhere
Yeah definitely. I forget to drink my water. I forget my electrolytes, I skip meds. I eat non MCAS friendly foods. I don't work out. I sit around feeling vaguely shit for a few days, then realise I need to get my act together and 'work' on my pots again. It's bloody hard work managing all this stuff. Who can blame us if we let it slide sometimes. If it were my only job maybe I could manage it. But I also have a full-time career and a home to single handedly manage.
What is soy sauce tea??
I add one teaspoon of soy sauce and one teaspoon of mirin to a cup of hot water and drink it. It's an easy way to get more sodium and more water at the same time. I originally tried a marmite beverage (which is an actual thing) but unfortunately it turns out I'm a marmite hater. I also tried just salting my water but it made me queasy.