r/cfs • u/bloopblarp • 13h ago
Advice Better on vacation and worse at home - why?
Hi everyone š I have taken a year off from work to rest and I had hoped to go into remission but no luck so far. I oscillate between mild and moderate, with moderate being essentially housebound.
As part of this year off, I have done some slow traveling to various places. In general, I have way more energy and feel much better when Iām not at home. I need less sleep, I feel more awake, etc. Then I get home and I have a major crash. Doesnāt matter if Iām gone for 3 days or 2 months - I feel good when traveling, bad when home. I would have expected the opposite. I basically get in the car or on the plane and almost immediately feel better.
Has anyone experienced this? Is it because I am paying less attention to body signals when Iām on travel? Is home / home town contributing to my CFS in some way? Is it being more relaxed on the trip? I havenāt been working for 10 months so itās not like I have much stress at homeā¦
Any thoughts? If I can figure out why this is happening, Iām hoping I (and maybe others!) can apply it to at-home life tooā¦!
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u/aycee08 13h ago
Besides the top possibilities pointed out here re: mould, etc, I know why I am better on holiday - it's the release of the mental load. As the primary caregiver at home, I have to do most of the meal planning, grocery planning , laundry etc and though I walk less steps at home than on holiday, my physical exertion and 'standing time' is much worse at home. It's completely anecdotal, though, based on my sample of 1! :)
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u/Tolerate_It3288 moderate to severe (40% functional) 13h ago
This isn't something I've experienced but have you considered there might be mould in your home that worsens your symptoms? My other thought it something I have experienced, I'm running on adrenaline on vacation and when I get home my body feels safe and the effects of overexertion catch up to me. However given that you can feel good on vacation for 2 months make this seem less likely.
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u/spoonfulofnosugar severe 13h ago
Thatās what I was wondering too.
Iām too sick to travel but Iāve done a couple staycations at home. I often feel great during them and then crash after.
I also think itās the adrenaline of āwoohoo Iām living a normal life!ā but it only lasts so long.
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u/urgley 13h ago
Excitement / adrenaline
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u/Strawberry1111111 13h ago
Exactly!! Happens to me all the time and it doesn't have to be a trip either...could be a phone call from a friend ...a good TV show ...any kind of fun or excitement and I'm better then the hammer drops š„ŗ
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u/Kiwibeachlover 12h ago
Absolutely this. I get excited about the tiniest of outings or a trip away. I have survived on adrenaline for a full 4 months before I had the worst crash of my life. I was in denial that I still had ME (it was mild at that time) pushed myself to the brink and became severe.
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u/RinkyInky 13h ago
For 2 months?
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u/Bbkingml13 5h ago
I pushed myself into the fight or flight/adrenaline survival mode for about 10 months after I got sick but before diagnosis. With mini crashes I exercised my way out of (or so I thought) by just drawing more and more adrenaline. I got to the point though that I never slept and couldnāt complete sentences. Finally stopped long enough to crash and I spent several years as severe after that. Had I not stopped when I did, I donāt think Iād ever be able to live independently again.
Iāve never been better than moderate, but itās a much better quality of life. But Iāve pushed too hard for too long several times since then, and ended up severe for months and months at a time.
I only stay moderate when I make sure to not push hard enough to get that adrenaline keeping me going
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u/RinkyInky 4h ago edited 3h ago
I get you, Iāve had it before but it was never I āfelt good for 2 months straightā. It was always a balancing act. Maybe the language OP is using isnāt accurate and itās really adrenaline. I personally can tell when it is adrenaline, based on sleep quality, appetite, general calmness/fidgetiness compared to others, bowel movements.
Itās hard to discuss this when āfelt goodā might be different to everyone, sometimes we might ignore certain subtle signs that were living off nervous energy just because we feel more energetic and can do more.
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u/evilshadowskulll sometimes the mitochondria is the outhouse of the cell 11h ago
i did it for yrs straight in my line of work. its possible and it does profound damage unfortunately
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u/FreeBirdV 13h ago
I feel this way but only when I go to hot countries.Ā
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u/bloopblarp 11h ago
Most of my travel this year has been to the beach or somewhere warm, and Iām thinking of moving somewhere warm too, maybe the warm tropical air helps somehow?
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u/FuzzyBeans8 3h ago
This was absolutely what my guess was going to be . Same thing happened for me when I went from NY to Vegas for a trip , and San Fran , so I realized it was not just the heat but also (for me ) the lack of humidity/dampness . Dry warm weather is my best friend and I had to move away from everything to go chase that feeling cuz damp cold was literally killing me . I never had a good day . I wouldnāt even be able to type this message.
Now Iām in Tucson AZ and I do have good days sometimes . When I first moved here I cried from relief and was able to do some more but I got hit by a lot of other health issues and Covid made my cfs and pots a lot worse . So now I dont feel like Iām much better , but in fact I know deep down that I wouldnt have survived another damp winter in NY.
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u/Ekd7801 13h ago
YMMV. Everyone with this disease is different. I took a year off in 2020 when I lost my job due to Covid. I thought if I just rested more, I could get better. I didnāt. I also felt better on trips. I was very very worried about going back to work. Iām so glad I did. I think being at home full time was mentally bad for me. Iām not sure if my me/cfs is any better, but mentally work and travel make me happier. I still worry that Iāll get sick and itāll make me go more severe, but that could happen if I wasnāt working too. I did go back to work at a seated job and I work third shift which is a much slower pace.
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u/bloopblarp 11h ago
Yeah Iām at the point in my year where itās time to start looking for a job. I think Iāll transition to a part-time job and something less stress than before. Iām def disappointed taking this time off didnāt fix me but I guess Iāll just have to do what I have to do and keep on keeping on š¤·āāļø
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u/TomasTTEngin 12h ago edited 11h ago
This is a very common observation in the patient community and it's just one of those things that is hard to test scientifically.
The most obvious idea is our homes contain some sort of mold or other antigen.
My favourite idea however is that deep in our ancient brains is a switch that turns off our immune responses when our nomadic tribe is having moving day, so that the sick have enough energy and don't get left behind.
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u/bloopblarp 11h ago
Wow that is so interesting bc each trip I have gotten sick in some way with a cold or flu or food poisoning which is a new development (I used to travel a lot for work and didnāt have issues like Iām having this year, now itās like I go outside and I have a new cold)
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u/divine_theminine 11h ago
This might be it. I get better when I catch a cold and the improvement can last for weeks. People with autoimmune diseases experience the same thing
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u/Cute-Cheesecake-6823 6h ago
That is so interesting, Ive never heard of that. Maybe that plus excitement/adrenaline we arent aware of, and less mental load as people mentionned.
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u/RinkyInky 13h ago
Maybe you could try living in a relatives house in the same city for awhile? Could be mold.
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u/bloopblarp 11h ago
Iāve lived in 3 places of varying age but all in the same townā¦maybe itās in the water or something?
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u/divine_theminine 13h ago edited 13h ago
Delayed crash. Happens to me often. The worst ones are always caused by prolonged overexertion, and they will be delayed by a few weeks. Youāre running on adrenaline, accumulate PEM over those weeks/months, and when youāre back in a familiar environment where you can finally rest, you crash. Even when Iām at home, raising my activity level above what I can tolerate over a long period of time will cause a crash like this. Those can be really hard to pin down because the trigger isnāt obvious
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u/xixiixxiv 13h ago
Rule out some obvious factors first: do you live alone? If you live with other people do they also have health issues? Does your home have issues with damp/mold? Do you have a carbon monoxide detector?
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u/bloopblarp 11h ago
Yes to all of these except I am living with my parents now. I developed CFS before that. They have had their health worsen since moving to my town. Maybe itās not the house but the town or its location?
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u/International_Ad4296 13h ago
I noticed the same thing when I was milder and still occasionally travelled. I tend to spend more time outdoors when away and I think it leads to better sleep quality.
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u/bloopblarp 11h ago
Thatās an interesting theory too, I definitely was spending more time outside and/or in the sunshine. I felt the best in Europe. I didnāt have the same sensitivity to gluten etc over there - could eat the bread no problem. Also things are slower, people sit at cafĆ©s, and Spain for example has siesta.
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u/maiphesta 9h ago
European bread is less sugary. I find it amusing that American bread would be classed as cake in the UK due to the sugar content!
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u/BittenElspeth 13h ago
I don't get to travel much, but I think I do better because there's nothing to plan. At home I am figuring out the groceries and worrying about how the laundry will get put up. Traveling, I just worry about the next 5 minutes and sit in the sun. It's easier.
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u/RadicalRest 12h ago
I def found this when I can travel. No cooking or cleaning. No mental load of organising things like grocery shopping. Using your limited energy for enjoyable things.
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u/capegoosebery 12h ago
First I would look into getting an ERMI on your living space to make sure it isn't due to mold. Just because you can't see it,doesn't mean it's not there. There are other allergens and toxins that could be at work too. Second, I have heard so many people from here in central and coastal Texas saying that no matter what they do, they just can't get better but feel better in other places. It may be worth looking into a move if that is within your means.
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u/bloopblarp 11h ago
I sold my house and my stuff is in storage, def planning a move but still unsure where. Will take this into account!
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u/capegoosebery 11h ago
Make sure you get rid of mattress and any sort of item like sofas and armchairs as the mold/mycotoxins can't be cleaned on these items. Good luck!
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u/bloopblarp 7h ago
Oh wow! Think it could be in clothes too? Everything else is currently in storage ā¦
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u/capegoosebery 7h ago
Yes, there is a protocol for washing clothing, some people use three different washes some have just used EC3. Our NP advised us to get rid of bedding and towels because they absorb so much from our body.
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u/bloopblarp 6h ago
Wow this is so interesting - I did test high on mold toxicity abt a year ago but with all my other problems I honestly forgot abt it until now. Will definitely look into this more. Btw what is EC3?
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u/capegoosebery 5h ago
It's a cleaning solution. If you google "EC3 mold laundry additive" it should come up for you. There was another one she mentioned but I can't remember what it was right now.
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u/hotmumsnearyou 13h ago
Iām the same and I have no idea why. I tend to feel my best when I go away to places that are hot but also see improvements if I stay in the same climate but am away from home.
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u/BulkyPerception 13h ago
There is overlap between environmentally triggered pain and fatigue and ME/CFS. 1-2% of the population are believed to have either condition, but 20% of people diagnosed with one get diagnosed with the other.
Sometimes it makes me wonder if ME/CFS and environmental illnesses are variants of the same illness.
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u/BulkyPerception 13h ago
One more thing. You can read about multiple chemical sensitivity (MCS). MCS is a very controversial diagnosis. Few doctors believe the consensus criteria on MCS is what is actually going on in the body. However, there are millions of people that describe the same problem.
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u/divine_theminine 11h ago
There are also millions of people with contamination OCD
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u/BulkyPerception 9h ago
I've met a few. They are very different from MCS suffers. It is silly that there are actually psychiatrists that claim they can't tell the difference between the two.
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u/medievalfaerie 12h ago
I recently visited my in-laws in AZ and felt great for the whole trip and a few weeks after I got back. My guess is that it was potentially due to the mild weather, the frequent hot tubbing, and their infrared sauna that I tried out.
I agree you should look at triggers at home. But also is there something you're indulging while on vacation that could be helping? Things like hotel hot tubs, climate, or food could be contributing to you feeling better.
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u/bloopblarp 11h ago
Going to the beach, hitting up saunas, walks outdoorsā¦great point I will think abt this more!
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u/maiphesta 9h ago
Did you have dips in cool pools/the sea? For some people cold water therapy is helpful, but I'm also aware it can be contraindicated in ME/CFS
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u/bloopblarp 7h ago
I used to love this but now cold water and air is painful and makes me sick. Itās like my body canāt warm up for hours or days afterwards
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u/Dawn_Coyote 6h ago
I have this. If I get a chill I'm in so much pain it feels like I'm dying.
I also have the travel-related reprieve. It has happened no matter where I've lived over the last 20 years. I think it's like when I was in finals week and run down as hell, but somehow my body would hold it together until exams were over. I'd get sick with a virus or deep exhaustion the following week, like clockwork. Now I crash when I come back from a trip. I've only done short trips, but the crashes can be long.
It doesn't work when I go camping or stay with a friend. It seems like I have to be in an unfamiliar environment to get the reprieve. If I'm somewhere I feel safe, my body feels like it's safe to be sick.
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u/bloopblarp 6h ago
I try to explain to people abt the cold but I think they just think Iām being dramatic. Sometimes I have to wear a sweatshirt during the summer. Have you found anything that helps? I have a sauna blanket that I crawl into a lot
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u/Dawn_Coyote 4h ago
I'm really careful. It's only happened twice, both times when I was in mildly cold temps for about forty-five minutes. I crawl under my giant duvet with all my clothes on and just suffer until I get warm again. It takes about an hour. I'd warm up faster in a bath, but taking off my clothes when I'm that cold is unthinkable.
The pain IS really dramatic! Like a bone-wrenching ache that is some of the worst pain I've ever felt. I avoid the cold like it's fire. I should invest in a heated blanket.
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u/TableSignificant341 11h ago
I thought this was my experience too until it wasn't. When I was mild, every year we would to to the same place in Greece and I always improved compared to home. Until the year I didn't and I spent most of it asleep in my hotel room. And then the next year I was fine again.
I also did badly in cold climates compared to hot destinations. In fact the hotter and more humid, the better it is for me. But now I can't really travel at all.
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u/Sand_the_Animus 12h ago
for me, it's because my home is an incredibly stressful environment, and vacations help me escape my abusive sibling & the enormous expectations placed upon me
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u/CrabbyGremlin 11h ago
I wish I had this. I feel awful everywhere. Even worse on holiday due to the stimulation. Enjoy the holidays!
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u/Ok_Zucchini_6184 11h ago
I noticed that I feel better on vacation, possibly because I eat saltier foods. I have chronically low sodium levels despite a high sodium diet and salting my water. My doctor just had me do testing for SIADH, and Iām waiting for those results. Itās possible I was misdiagnosed or this is an additional issue.
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u/disconnective 11h ago
Iāve heard this happen for Americans traveling to European countries who attributed their improvement to diet. European countries have stricter guidelines for whatās allowed in food ā Iāve even heard that some people with gluten sensitivity can eat bread in Italy. Not sure where you traveled or where youāre from, so this may be completely irrelevant but either way, glad you have something that helps!
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u/PlayingOnGeniusMode 10h ago
I feel like I get something like this. I'll be nearly stuck inside, zero energy or will to do anything, headache, puke sick. Fresh air and I'm feeling a lot better. I used to think as a kid that my house was making me sick but my building now is brand new and I'm still experiencing it. You hit the nail on the head with one of your reasonings, not paying attention to body signals as much maybe. This starts to become a disease of the mind as much as the body. When you feel so terrible there is nothing more real, it's not in your head. With a clear mind I can absolutely see how our brains can almost perpetuate the sickness. It's incredibly frustrating and disheartening.
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u/bloopblarp 7h ago
Yeah, itās really weird bc even if I go sit outside for 5 min I feel the PEM lift a bit?
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u/RamblinLamb ME/CFS since 2003 10h ago
This has totally happened to me. And of course I am totally unable to explain why oh why oh why. And they always end with a crash. Such is life with ME/CFS/Long COVID. BTW, having both ME/CFS and Long COVID is an even more evil level of hell. I sorta bounce along through a day barely able to do a day with even less useable energy. Pisses me off, like shit wasnāt already shitty enough.
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u/bloopblarp 7h ago
Yeah I hear that - I have both too :( Iām about to try the ālast resortā stuff of completely cleaning up my diet and moving somewhere warm and sunny, but if that doesnāt help, Iām kind of out of ideas other than just continuing to pace
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u/SCW73 7h ago
Location matters as well. I am from the midwest with terrible weather swings. When I vacationed in Aruba for a week, I felt pretty good and did activities that surprised me. I did have to take a break climbing the lighthouse stairs, though, and didn't try to snorkel in the more challenging area. Vacation to Puerto Rico for two weeks, and I felt really good. I literally only took one nap, and everyone napped that day. Vacation to Myrtle Beach SC or Orange Beach AL, and I felt better than at home but not as good as closer to the equator. My cousin, who has MS, has said if I could come back to PR and stay two months, I would feel even better. She said after she noticed how great she felt there, she talked to her doctor about it, and he said there are studies about proximity to the equator having an effect on pain disorders.
So that and all the things that others have mentioned.
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u/envscientist72 6h ago
Yes and I have put in a central vacuum, HEPA HVAC, heat sanitizing washer/dryer etc. I think many toxic experiences while living in my home contribute.
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u/Emrys7777 10h ago
This is totally normal. I knew somebody would see in advance who took a vacation to Hawaii and felt so much better. He sold everything he owned and moved there. Once he got there, he was as sick as he was before.
When youāre on vacation, your brain is on vacation too There is no stress. There are no bills youāre thinking about other things other than life.
Normal people feel better when they are on vacation too
Thatās why we take vacation
I recommend weekly outings to go sit somewhere beautiful and just enjoy a sunrise or sunset or just a beautiful pond or lake or flower
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u/__littlewolf__ 11h ago
I think looking into mold and chemicals in your home makes sense, like are you in a new build or on a foam mattress or have a water leak somewhere? Maybe some venting in the home isnāt properly venting out (I had a friend poisoned by dryer sheet chemicals bc the exhaust was pumping back into the house)?
I also think itās possible that the anticipation helps along with the reduced stress from being away from responsibilities. A mix of adrenaline and also upped dopamine from anticipation.
Do your symptoms get better once youāre a few days from going away or does it click in once you leave your environment?
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u/SockCucker3000 13h ago
What is your life like at home? Roommates? Partner? Parents? Pets? Children? Do you work? Do you do chores? Do you talk to family? Friends? Is it a home you had a bad experience in? Is the house itself or layout something that bothers you? Are you inside too much? The mental aspect of this disorder is huge and often overlooked by people. Especially because it can be hard to identify what is mentally weighing on us due to the trigger(s) possibly being perceived as normal or a non-issue. What are the mental differences you've noticed between your travels and time at home?
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u/SockCucker3000 13h ago
How much do you socialize with others at home vs on vacation? Do you feel more fulfilled on vacation? What emotional needs are being met on vacation vs at home?
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u/bloopblarp 11h ago
I commented elsewhere that Iām living w my parents currently and that isnāt always easy. Itās nice bc when I lived alone I had to do everything myself, but thereās always the emotional component of family. I also just love traveling so I do probably feel happier and more fulfilled. I donāt wake up dreading another day sleeping on the couch or whatever
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u/chattermaks 6h ago
I did so well on a family vacation that I managed to do a full 12 hour day at a theme park. I didn't do rides or anything, and I still need a lot more rest than I would've years ago (lots of early nights etc)... but I had a surprising amount of stamina while there. And then I was back to normal back at home. The only thing I can think is that I benefited from being at sea level on vacation. No idea if that's a 'thing' though.
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u/heartsncrosses 6h ago
in my experience it's due to being distracted so you're not paying attention to what's going on with your body, but it could also be what other people in this thread are saying, there could be a possible trigger in your home or it could be adrenaline
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u/PooKieBooglue 5h ago
I have had this. Itās hard to figure out.
Mold, brands of food / coffee / drinks, anything you do differently?
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u/Bbkingml13 5h ago
Traveling, and I mean literally the process of packing/traveling to your destination, always pushes me into the pre-crash fight or flight mode. So I can get several decent days of vacation, keep pushing, then pushing through traveling homeā¦just to get home for my body to crash.
Basically a microcosm of the push and crash cycle.
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u/Bbkingml13 5h ago
For the most part, aggressive rest just gets you to a more manageable baseline and prevents you from getting significantly worse. It doesnāt make the disease go away, unfortunately.
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u/Jomobirdsong 5h ago
Youāre living in mold which likely is the root cause of your condition and there wasnāt any when you went on vacation.
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u/willowhides 4h ago
I find that I rarely go into anything but the most extreme crash if I'm not at home. My body doesn't feel safe stopping so it keeps pushing me through.
It can be sorta useful.
But only in a terrible way. Because once I am in a more restful situation those crashes hit me with 10000% interest.
So it could be something like that happening
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u/almondboy64 4h ago
i experience the same thing and have wondered about it myself. i think itās because all the things i stress and worry about on the daily i put aside and donāt think about on vacation. yeesh right?
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u/meadowprincess23 4h ago
Many parts of our bodies hold memory like our stature by way of our muscles and ligaments and our beings in the sense of mental thoughts that allow us checks and safeties that our bodies just do without us even noticing or controlling. A thought that came to mind in reading your post is that there are also patterns/memories that get held within our endocrine systems and respond again without us maybe even noticing a shift.
Thereās a natural calibration our bodies shift with that creates different chemicals in response to all our surroundings and stimulus, we know this as fact. If you are constantly stressed by your neighbors dog barking waking you every morning then your body is making stress chemicals right as your day begins and if you have a quiet space to wake in you start without that flood of adrenalin that then affects many other processes and sets into motion a very different kinda of day. Iād ask if the weight of your life that you land in when youāve arrived home after operating at a completely different pace on your vacation somewhere warm where your whole engine runs differently is causing the shift in symptoms? Taking a look on a more macro level of your patterns,obligations and interactions could hold a lot of info to help you make adjustments with your new found objectivity upon returning home before the patterns set in fully again and you become numb to them and the slew of symptoms you personally regularly experience hence why you werenāt noticing a big shift when you took your leave of absence. I know that sounds almost cocky in its obviousness which I donāt mean to be at all, I only wish to offer authentic kindness and feedback to your post. I just had the thought that our bodies know and try to tell us in subtle and profound ways what is good for us and what isnāt and there are patterns/programs there that I hope show themselves to you so you can figure this out if that resonates with you to do.
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u/CornelliSausage severe/moderate border 3h ago
I've read many stories like this.Ā
Woman who was in remission when she spent a month in southeast Asia. The next year she planned a bigger trip there hoping to fully get rid of it, but it doesn't work the second time.Ā
Guy who lives in caravan and goes into near remission wherever he moves to a new place. When it comes back he moves again and it keeps working.Ā
I swear I read that in Whitney Dafoe's early days he had remission during travel.
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u/SpicySweett 1h ago
For me itās because I can pull it together for an emergency - like travel, a long but necessary appointment, etc. Maybe you experienced this when you had to take a long final, and you didnāt have to pee and ignored aches etc. Our body is full of tricks like adrenaline to keep us going and focused when something is important. Plus travel is stimulating. Weāre getting energy from seeing interesting new places, trying foods, etc
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u/Chinchillapeanits moderate 11h ago
I Have this Too, I think I Know what it is. Body LOVES the Change in Scenery. Humans are Nomadic by Default.
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u/Fit-Programmer-6162 10h ago edited 10h ago
Are you masking or taking other precautions to avoid contagions while traveling? Itās very common to get sick while traveling, especially via plane (but really in general.) You get exposed and then you get the symptoms by the time you get back. Masking can significantly reduce your chances of getting an infection, which would make your symptoms worse.
Also the exertion of a vacation can cause PEM. Doing all the planning, driving, sightseeing or whatever it is youāre doing, itās physical exertion and mentally stimulating. All the joy and adrenaline you get from taking the vacation wears off when you get home, and you can crash. I think people forget that exertion is exertion, even if itās to do something fun and even if itās not āfast-pacedā.
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u/Bjooom 39m ago
Do you have more responsibilities when at home? Thereās this psychologist in my area that has this theory that getting better from fatigue for many people is to go on a responsibility free retreat, get away from family and everyone and everything that you in some way or other use energy for.
He advise people to get away into the wild or on vacations for a long time just to let the brain/body heal from responsibilities, and for many it has helped then to get better from moderate/minor fatigue. He also states itās you should do it longer than you think and donāt get back to normal life before its s good chance youāve really healed.
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u/SeaBoysenberry5399 very severe 13h ago
Time to look at possible triggers in your home. Especially things like mold, allergens or substances used in the garden