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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What type of vacation or break do you still manage to do?

What type of vacation are you able to do?

  • Coach/bus based vacation

    Votes: 0 0.0%
  • RV/camper van/caravan vacation

    Votes: 0 0.0%

  • Total voters
    16
Messages
3
Location
Wiltshire, UK
I have found that the only type of holiday I am really able to do now (and the only one on which my wife truly relaxes knowing I'm ok) is a cruise. Having had ME/CFS for 12/13 years, I think it's the perfect break for many people with our illness - for example ;

- a cruise allows travel to beautiful places with a bed/cabin just minutes away for the most part.

- you don't necessarily have to fly - and check-in/boarding usually takes minutes (rather than hours) from the point they unload your car or coach, and Assisted-Boarding is available for those requiring it.

- most cruise companies offer dedicated restricted-diet chefs that ensure a much better/easier dining experience for those suffering food intolerances than is available in normal restaurants.

- cost is very reasonable, with some cruises costing as little as £40 per night - amazing considering it's full board and great quality.

- you can do as much (or as little) as you are able, and most things onboard are done on a very relaxed basis which allows you to recharge/rest in-between ports.

I appreciate it can be incredibly difficult to go anywhere with ME/CFS, but are there any other vacations you think work well for our illness ? If so, why and what is it that makes it so ?
 
Messages
15,786
Cruises would work very well for me, but medical expenses are too high currently for that to be feasible.

Most of my traveling now is to visit family and for medical appointments. Sometimes we try to get away for a weekend at the Wadden Islands nearby, but anything longer isn't practical since my fiance uses most of vacation time to take me to appointments and such.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I find cruises are a good option as well but the successful ones I have done were expensive and now out of my price range.

The cheaper ones I did all had problems - long queues for meals, being seated at large tables and having people wanting to speak to me (when physically all I wanted to do was eat and crash), no room service, large noisy, hot restaurants, buffets I find it too hard to carry food from, poor food options, long delays getting on an off the boat, only showers in the cabin, stuffy cabins with small window, long walks from the cabin to the lifts, overcrowded lifts, not enough chairs around the pool).

Would recommend a good cruise but watch out for all those elderly people who can do far more than we can. Really brings home how serious this disease is.
 
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golden

Senior Member
Messages
1,831
Barge would be good.

Tent at the bottom of my garden.

Havent had a proper holiday in decades.

Am going to get a passport though when i can afford it.

I wanted also a VW campervan on my wishlist for when i can drive but their like 10-20,000 pounds :(

Skyros maybe good for solo relaxation hols.
 

place

Be Strong!
Messages
341
Location
US
I have been on all kinds of vacations with this condition, europe (Rome was hard due to all the walking and insane cab drivers), camping, car tours, single carribean countries and beach houses. But a cruse by far is the easiest, most relaxing and least taxing. You don't have to worry about food, where to get it or make it. No need to figure out directions or what the whole group wants to do because everyone can pick all their own fun activities to go to. No one is upset because they did not get to do what they wanted. It is family bliss. If I am having a hard day, I can stay in my room and order room service (most cruises have free room service). Or I can just sit on the pool deck and watch the excitement. A cruise allows as little or as much participation as you want. Everything is taken care of, you just need to ask! I saw a couple of people in wheel chairs, the ship was well prepaired for it.

I have only done Carnival, and my only complaint is that they did not have much selection of Glutten free stuff. I know that other cruise lines, you can indicate your food issues and they will cook for you spacifically. I'm used to having some grains/bread (rice, etc.). So the only thing I could eat was meat and veggies, and I caved and had some delicious french toast, sooo good but I paid for it later.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Traveling by train to visit relative is all I have the money and energy for.

When I was still working (and had no diagnosis), I traveled to a couple of hotels that has spas so that I could 'relax like I meant it'. They were both fairly quiet, non-resort hotels.
 

Raindrop

Senior Member
Messages
129
Location
USA
For those of us with serious immunity issues, cruises are really a bad, bad idea. This hasn't been
mentioned. When a serious virus (ie the Norovirus ) begins to spread on a cruise ship, it's
not a place I would want to be. Viruses can spread like WILDFIRE on ships.
The last time I contracted the Norovirus winter before last, I was
deathly ill. It took me weeks to be able to function as before. I would seriously watch out
if you are one who has serious immunity issues and who would need to get to land for emergency help.
Sorry if I have ruined anyone's dream of cruising.....My own dream has sort of been dashed now, sadly.:meh:
 

Raindrop

Senior Member
Messages
129
Location
USA
For those of us with serious immunity issues, cruises are really a bad, bad idea. This hasn't been
mentioned. When a serious virus (ie the Norovirus ) begins to spread on a cruise ship, it's
not a place I would want to be. Viruses can spread like WILDFIRE on ships.
The last time I contracted the Norovirus winter before last, I was
deathly ill. It took me weeks to be able to function as before. I would seriously watch out
if you are one who has serious immunity issues and who would need to get to land for emergency help.
Sorry if I have ruined anyone's dream of cruising.....My own dream has sort of been dashed now, sadly.:meh:

Continuing here, this is an interesting topic and the responses just show how diversified the range is of wellness/ illness in this group. Personally, all I can usually do is DREAM of a day when I can travel, as I sorely, sorely
miss it SO so much. Even when I have gone away a few hours out of town, just the preparation for
a brief little trip is DAUNTING!! SO many disability aids need to be taken and planned for.
It is so very hard to get people to understand my needs at the destination because they are just so unusual.
It's just so much work, it makes me wonder if it is worth it at all.......nonetheless, I do still dream and hope
for a miracle in my future.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I have been able to go away for the past few years, but only because I have a wonderful husband who drives me and takes care of me, that way we can spend family time together.

I prefer independent travel - I cant stand crowds or noise or bright lights or perfumes etc so like to have my own place to stay and my own car to get back to. I also use a wheelchair.

We have stayed in Apartments, villas and static caravans (trailers) in France and Spain (just about driveable) then we do some day trips with our car and wheelchair and many days just staying at home and some days by the beach or watching the kids play in a pool.

I always research where we are going as much as I can so that I get the best out of it - I cant stay on really noisy party type campsites as I would never sleep. We are going this summer to the SW of France for 10 days and I chose a campsite with mobile home without a large disco, but with pools for the kids - I get the best one we can afford.

Having our own place is important for me in terms of the noise issues, less stress of being in the same space as other people (being able to shut myself behind my own door if I need to) and it makes eating easier - especially as we are a vegetarian family. This way I can eat what and when I like.

The car is great and I use it as a mobile house when we are travelling and also means I don't have to deal with buses or trains or coaches when we are there - we can just use our own car and my husband is fierce about driving into any city at any time of day without getting stressed. I have a blue badge and we parked in Barcelona and Brussels and Malaga for free with it, just on the road in the city centre (some cities have maps of the disabled parking spaces online)

We drove all the way from West Wales to southern Spain last winter and stayed for one month very cheaply in an apartment near the beach. We took a large plastic box with a trangier camping stove (runs on methylated spirit and you can use them in wind and rain), cups, plates, knives and forks and food and drinks for the trip - we saved a ton of money this way and could eat whenever and wherever we needed to. In May we even cooked up a cup of tea and lunch in the car park of KDM's clinic in the rain!

I have to say if I was alone I don't think I could travel at all - but these trips are very important for us as a family - even though my illness limits us quite a lot and I always have a crash when I come back - without my wheelchair it would be impossible - but I find that with it I can even go out most days for short trips - say to the patisserie and then to the pool, lay down and read for a while (in the shade) and then wheeled back to the accommodation for an afternoon nap. Without the wheelchair I couldn't walk that much every day so would just be stuck inside.

I cant bear he thought of going to a large resort hotel - there would be bound to be issues with food, noise etc and I would hate to spend most of my holiday in one small room.
 

manna

Senior Member
Messages
392
Im not saying nothing, although thats really how it is at the mo, but it wouldn't be easy. finances aside, MCS adds another level of complexity when going out into the world. Id like a fair sized camper too. if i could id like to go down to cornwall for a bit of camping on some rustic camp site with nothing but seabreeze. in 12years i think ive only left the house to sleep in the car when there was some extreme local poluion that got in my house.
 

Mij

Messages
2,353
@justy when I lived in Europe my family would travel with our caravan through France and Spain, those were wonderful memories. If I had a loving husband and lived in Europe I would love to do this again.
 

GracieJ

Senior Member
Messages
772
Location
Utah
For all my need to get out and enjoy, when it comes right down to it, I prefer a "stay-cation" in my own home, with extra food purchased, something new to do, and one rule: there are no rules!

I have no idea how anyone with ME/CFS can tolerate the travel, time changes, foods, strange beds, extra stress, etc. of a vacation, let alone the costs involved. More power to you if you can! I am a bit jealous. Even if I could afford it, I would not take a trip anymore. Not worth the recovery time, or the swollen legs or whatever.

It is really nice to hear that many can still do this.
 

manna

Senior Member
Messages
392
For all my need to get out and enjoy, when it comes right down to it, I prefer a "stay-cation" in my own home, with extra food purchased, something new to do, and one rule: there are no rules!

I have no idea how anyone with ME/CFS can tolerate the travel, time changes, foods, strange beds, extra stress, etc. of a vacation, let alone the costs involved. More power to you if you can! I am a bit jealous. Even if I could afford it, I would not take a trip anymore. Not worth the recovery time, or the swollen legs or whatever.

It is really nice to hear that many can still do this.

you want to try having mcs too. "me/cfs is a walk in the park in comparison" - said a member of another forum. sorry i thought we were competing? wish i just had me/cfs, you're so lucky.
 

PennyIA

Senior Member
Messages
728
Location
Iowa
I get seasick - so cruises are out.

I have flown and driven long distances - those have been really difficult.

I have considered some shorter distance bus and/or train travel - but I'm not sure a quicker flight that's over faster might not still be a better trade off.

What has worked is to take a long weekend, stick mostly to the hotel and pool area and focus on just relaxing and enjoying my family. I just can't manage to do it as often as I would like with all my medical expenses and keeping up the energy levels enough to face it.
 

brenda

Senior Member
Messages
2,262
Location
UK
I have just had a weekend away at a Catholic retreat centre which is 40 mins drive away and in glorious Northumberland countryside. Its an old stately home and has a wonderful relaxed caring atmosphere. They do special diets and the food is simple and perfectly acceptable for a few days off my normal diet of organic low carb.

I have MCs but chemical levels are not high and in fact it is very good for me with low emf emmisions. Cost was £114 for a mysticism retreat with a speaker.

It's all l really want to be away for so packing is easy and l don't have to be in a strange bed for long as l don't sleep well in them.

I met some people l will be keeping in contact with and go to their monthly meetings. One old lady with her 50 something son who has ASD, has invited me to their home . l got on extremely well with her and she understands aspies of course with her son.

It was really worth attending even though l am not a Catholic but into mystical theology. I am pretty whacked though and having to stay in bed.
 

GracieJ

Senior Member
Messages
772
Location
Utah
you want to try having mcs too. "me/cfs is a walk in the park in comparison" - said a member of another forum. sorry i thought we were competing? wish i just had me/cfs, you're so lucky.
Oh, I have MCS as well. Just didn't spell out the whole laundry
list. There is more...
 

SOC

Senior Member
Messages
7,849
For those of us with serious immunity issues, cruises are really a bad, bad idea. This hasn't been
mentioned. When a serious virus (ie the Norovirus ) begins to spread on a cruise ship, it's
not a place I would want to be. Viruses can spread like WILDFIRE on ships.
It's not just norovirus, which is what first springs to the mind of many people thinking about cruises. As Raindrop says, viruses spread like wildfire on ships. There are too many people too close together. People often don't cancel their cruise because they're feeling a little off. Those people expose the rest of the passengers (and crew) to whatever they have.

Colleges are risky places for people with immune dysfunction. Airplanes are also problematic. Cruises are probably worse than both in terms of potential exposures, close contact, and insufficient resources to deal with infection in an immune impaired patient.

In my experience, there's also far too much walking and stair climbing needed on a cruise ship and the cruise ships I've seen are not well suited for wheelchairs.

I've been to Disney World with a power chair and stayed in a hotel on the monorail. That was wonderful because the whole place is supportive of people in wheelchairs. You can stay in the hotel, eat well, and relax without leaving the building. You can also take the wheelchair-accessible monorail to all sorts of entertaining places. You can spend a little time at the sights and then go back to the hotel and rest without ruining the day for the rest of your party.

That said, Disney World is also a place with lots of people bringing infections from all over the place. Being careful about what you touch and spending more time in the hotel than the park can help, but it's still a pretty large infection risk.