Do you go on Holiday?

Replenished

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I'm wondering if many people with this condition manage to go on any holidays? I'm more so talking about going abroad. Are you at a point where you know you can just about manage going on holiday once a year? Do you actually find that a holiday helps your symptoms? Or is travelling completely out of the question for you?

I ask, as I haven't been abroad for well over 10 years. Initially due to severe mental health issues and anxiety and in more recent years due to poor physical health/M.E.

My partner, who I've been with for coming up to 3 years, is desperate to go on holiday abroad. The question hadn't really come up in the first 2 years of our relationship due to limitations and hassle of traveling due to covid, so a holiday was never really discussed. Now this summer she is desperate to go. When she asked me about it, I said I will try my best but I can't gaurentee I will be able to go when I feel so unwell. And risking a holiday may see me damage my health even further. Do I want to be having a crash/breakdown in a boiling hot holiday/hotel thousands of miles from home? Do I want to go on holiday when I already know that I feel dreadful almost every day and anything other than being at home is a challenge that causes huge stress.

It all feels too much in my current state and too much of a risk to take. But at the same time, if I don't try, I will never know. Who knows it might shift things in a positive way for me? Although, it's really stressing me out the thought of her asking me to book something in the next few weeks.

I essentially know the relationship will be over if I don't go on holiday with her. I'm limiting her life and on the one hand I'm sad she wouldn't stick by me and support me, but on the other I realise being with someone so limited is very difficult and unfair on her. I'm not sure what to do.
 
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Last holiday I managed alone and did ok with tbh was Feb 2020, since then holidays have become incredibly energy demanding and I either spend it in bed or struggling. Although I can only go on holiday from June to September, I do sometimes get good periods of health in January and Febuary but this year was a bit of a mess so can't comment on that.

My ME is deteriorating but presently stopped by the josh leisk protocol from going any further downhill it seems - thank god. Prior to that was becoming pretty badly moderate.

Maybe if I didn't have to drive it would be a bit better, but I feel overall weaker now a lot of the time. However after a week on josh's protocol I generally get my strength back, but then it can evaporate if certain things occur. Like I just had to take some ulcer treatments and that caused me to temporarily regress. Stress and lack of sleep of course also cause me to regress. Working full time is a constant strain I'd say but I do manage to recover over the weekend by sleeping a few extra hours both days and getting better sleep, 9 hours straight through or there abouts.

As for hols I am hoping to go away in August but that will still require a 90 minute drive which will cause a crash lasting 24 hours to 48. My crashes used to be one week to several months in duration, so things have improved, but sometimes it feels like symptoms linger for days up to 6 days before baseline resolution.
 

Woof!

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I really feel your concerns, @Replenished. Here are some random thoughts in no particular order:

Have you taken multi-day mini-holidays together locally to see what problems might come up?

Do you have a travel plan in place that works for you? For instance (using a few things that are important to my health), do you know which hotels tend to be fragrance-free? (In the States, Hampton Inns are good more times than not.) If renting a car or traveling by train or air, are things fragrance-free and roomy enough (to allow for access to meds, a D-Core travel pillow or a service dog, for instance). If a wheelchair may be needed, is there good wheelchair accessibility (the Montreal Metro was the WORST for me several years ago, and the elevators in Metro stations outside of San Francisco are frequently out of service). Do you need to prepare for your body's response to weather extremes? And can you get access to foods you can eat in your hotel room, without going to restaurants (a big issue for me, since there is a very long list of ingredients I can't eat).

If you know how to travel light, by train, I'm a big fan of the long-distance Amtrak trains for seeing beautiful parts of the US from the comfort of my (very comfortable) seat.

If you, like me, tend to pull on adrenaline reserves to push through busier days, you need to make room for equal-or-more down time when you travel. I know that my legs and arms can give out, so I make plans for that. I know that my voice can give out, so I plan lots of non-talking time and carry throat-soothers. I know that dealing with lots of people can be draining, so I plan for fun things that get me away from crowds and balance the time I spend with other people.

Since it is hard for me to say no to opportunities, I've often found myself doing waaaay too much and crashing a day later, but I can't say I regret this since saying 'no' comes with negative consequences, too (like depression). The art of dealing with this disease is finding the balance that works for you.

What do you know about the country/countries you'll be visiting? The more you know ahead of time, the more prepared you can be.

Putting together a flow-chart with your partner that plans for both your good days and your bad days, giving you safe places to replenish your energy while giving her ways to explore to her heart's desire might help.

Again, these are random thoughts... The devil is in the details. Where are you hoping to go?
 

BrightCandle

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I did a staycation a few years ago, I got half way through day 1 and spent the rest of the week in bed, that was back before I knew what was wrong. Nowadays I wouldn't even try its not worth it, if and when I see some more recovery and I am more capable before PEM a holiday would be nice, I need one after all this.
 

Hufsamor

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What we do, is that I send my husband on vacation with friends.
It’s not perfect, he’d rather have me with him.
But under the circumstances it’s a good idea.
We do this a lot.
I urge him to go to movies and dinner parties with friends,
and even if we would prefer to do things together, it’s not possible at the moment.

And we would both go nuts if he had to stay at home all the time.

I get more peace and quiet, he gets “adventure”,
and he comes home with photos and things to tell and greetings from friends.
 

lenora

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I pretty well follow @Hufsamor. My husband's friends are now dead, but I do want him to enjoy as much as possible. That means going to CA to visit our daughter and family there. He always has a nice time, they spoil him and it's a much-needed break for both of us.

Our daughter and family visit us frequently here, and we have another child who lives in the same city as us. As long as I see our CA family, I'm happy.

In the beginning he wouldn't go anywhere without me. That soon ended when I announced on the day of the trip that I couldn't/wouldn't go (and there will the same thing in the spring). I would love to, but I know my body and its limitations. Besides, she has a house where there is a main floor, but everything else including the bedrooms is downstairs, and a third floor down again.

Unfortunately due to one of my problems, I literally can no longer climb steps....something to do with the brain. I've had PT for it, practice on my own but our living quarters are on the main floor here, and I haven't been able to go upstairs for probably two years. I can close my eyes and climb stairs, but it doesn't translate from my brain to taking physical action. So that's always going to be a complication.

@Replenished....I think the idea of going on a trip locally is a good one. You'll be able to see exactly what you're capable of.

I used to go to Europe with my family frequently, but always stayed in one place. Around the corner from my in-laws and yes, I did have to stay in for two or more days frequently, but it gave my husband & children a chance to be alone with them. The same when visiting my mother in PA.

I'm now 75 though, and things have changed a lot (most older age related), thus it's why my husband is sent off alone. I can manage myself for that period and he phones many times a day.

I can remember getting off flights b/c of delays and then knowing I couldn't complete a trans Atlantic crossing. In the early days of the illness, however, we did go and time spent in London for example, meant a matinee and a show in the evening in London. We're big on Broadway type shows, symphonies and museum lovers. This is always broken up with coffee back at the hotel or on the way. But time has changed as have I.

I've been on railway trips and agree they're easy, but my guess is that your girlfriend wants to travel. Only you know what you're capable of at this particular time. Airports are harder than ever to get through, so take that into account. I can remember Rome being a nightmare after terrorist attacks and this was years before major clampdowns were done. A wheelchair may make it easier, I don't know.

You haven't said where you want to go, but you indicate that you can't do it now. You have to be upfront about what you can/can't do. I used to find that summer was the least desirable time to head off to Europe, but then it depends upon the time of year you're capable of going. It can be done but we have to pick the right time. You may have to rest a few days....but that's not terribly unusual. Don't drink alcohol on the plane as that can interfere with re-establishing your sleep cycle. How about a cruise with friends? That way, things are covered no matter what. Not my favorite way to go, but a lot of people love them. Yours, Lenora.
.
 

ruben

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This summer is quite an anniversary for me. It was the summer of 1972 when I got glandular fever and haven't been in normal health since. In 1988 I went to the Canary Islands for my first European holiday. When I'm abroad like this, throughout the course of the day I'll fluctuate say between about 75% and 25%. At 75% I'd be thinking, "wow, what a fantastic place this is. So good to be here." At 25% I'd be thinking, "I need some shade, I need to lay down, I must get out of the sun etc. But as I said these fluctuations would be an aspect of every single day on holiday. Eating would drag me down. Alcohol would drag me down. Overdoing it would drag me down. You can avoid the alcohol and over doing it if you're careful. But one has to eat. I haven't been on holiday since 2015 now.
 

ruben

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This summer is quite an anniversary for me. It was the summer of 1972 when I got glandular fever and haven't been in normal health since. In 1988 I went to the Canary Islands for my first European holiday. When I'm abroad like this, throughout the course of the day I'll fluctuate say between about 75% and 25%. At 75% I'd be thinking, "wow, what a fantastic place this is. So good to be here." At 25% I'd be thinking, "I need some shade, I need to lay down, I must get out of the sun etc. But as I said these fluctuations would be an aspect of every single day on holiday. Eating would drag me down. Alcohol would drag me down. Overdoing it would drag me down. You can avoid the alcohol and over doing it if you're careful. But one has to eat. I haven't been on holiday since 2015 now.
One positive thing I will say though. For me I found going in the sea HIGHLY invigorating. Especially in the surf. Made me feel really alive. Southwest France is brilliant for that. I have never surfed but body boarding was great fun.
 

Booble

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If you are up for it, sometimes you have to "fake it til you make it." You could choose a relaxing place to visit rather then a hectic one. Laying out in the sun or on a lanai isn't that much different from laying around at home. You're relationship is still new-ish so it might be worth giving it a try. Bucking up for her.
 
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I loved to travel before getting ME/CFS. I still try to travel, but it looks a lot different now. Using a wheelchair at the airport helps me save energy - lots of times there is so much walking at the airport! I also got one at various museums (they had some available) - my travel partner pushed me - and that also allowed me to see the whole museum without exhausting myself.

I also have to spend lots of time resting - either because I overdid it or because I am saving up energy for later. It helped for me to tell my travel partners how I was feeling so we could plan accordingly. Sometimes I would stay back and rest while they went out and explored.

I hope your gf is understanding of your abilities/limitations for traveling. Perhaps you can talk together to come up with ideas that would allow you to get enough rest in but also allow her to get out a bit? Or, you could take a test trip closer to home with lower stakes and see how it affects you?
 

Marylib

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Some things are worth paying the price later. But only you know how you feel and what you can manage. As someone said, some place where you can just relax and vege out when your partner wants to be more active with sight seeing, etc.?
 

Booble

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I'm wondering if many people with this condition manage to go on any holidays? I'm more so talking about going abroad. Are you at a point where you know you can just about manage going on holiday once a year? Do you actually find that a holiday helps your symptoms? Or is travelling completely out of the question for you?
Have you decided what you will do?

I hope you give it a try. It's easy for us to let the fear of having a health breakdown stop us. But the more we do that, the more we make it harder the next time. If it's just you and the girlfriend and you don't have to go to an event or be with other people, you can give yourself permission to go and feel however you feel.
As my husband likes to remind me, "brave and courageous!"
 
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We go on holidays as in towing our caravan 1-2 hours from home, and camping in the wild(it's allowed here in Norway). Camping sites do not work, there are people and noise everywhere. We have 3 children with their own challenges, add, autism, rare syndrome..
We already live on a small homestead with nearest neighbors 500m as the crow fly, so holiday is just a switch of the view. With the caravan in tow, we can stop and rest when I need it. It's our own luxury suite.
 

Booble

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We go on holidays as in towing our caravan 1-2 hours from home, and camping in the wild(it's allowed here in Norway). Camping sites do not work, there are people and noise everywhere. We have 3 children with their own challenges, add, autism, rare syndrome..
We already live on a small homestead with nearest neighbors 500m as the crow fly, so holiday is just a switch of the view. With the caravan in tow, we can stop and rest when I need it. It's our own luxury suite.
Nice!
 

lenora

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Our daughter and family just left for Europe. Expected hot weather everywhere they're going. They're staying at rental houses, villas....etc., but I doubt they'll find air-conditioning. They'll be visiting us on their return trip home....and we'll hear their news then.

I think a caravan is a great way to go when dealing with children, we used to camp with ours, but it has been a long time and no, it wouldn't be something the two of us would go on now. But with children....absolutely!

Right now we feel safest at home with our air conditioned comfort, place to prepare meals and all the equipment we may ever need in our garage. Perfect bed.. (sort of, but I have FM), all of this matters more as we get older. So don't what you feel like, when you feel like it. Sometimes paying extra in airfare is necessary if you happen to catch yourself in a good place.
,
@Booble's already in a rather perfect place. Just hop islands. Yours, Lenora