Help with travelling/heat PLEasE; first holiday in 8 years

[keenly]

hi
I am being pushed into a holiday with my family and i have not been away for nearly 8 years since being ill and having BAD pots/fatigue/MCS

can anyone give me any tips or anything that helped them?

I can't stand the heat and do not sweat. I am going to Turkey in June

thanks

 

[ukxmrv]

Hi Keenly,

Same problems with the lack of sweat and problems with heat. My advice is to be as comfortable as your money will stretch.

How are you with sea water or cold swimming pools? I find cold water is good for me anyway so on holiday I try to book by the sea or with an outside pool. Preferably one that has an adults pool or a designated children's pool. Chlorine is a big problem for me so outside only and sea-water better.

I can't get out of a hotel to see the sights so tend to stay in the hotel and let my travel companions go and explore. You haven't said if you have a wheelchair as that can make a big difference. I either use my own or at airports always use the airline service. Could not do it otherwise.

MCS is a problem on holiday so I sometimes ring the hotel and ask them to ensure no air fresheners in the room. Take my own sensitive clothes wash. Sometimes I've had to wash the sheets with my own before I can use them. I take a light silk robe with me and sleep with this if there is a problem.

Check there is aircon in the hotel and read the reviews on Tripadvisor. If I've stayed at hotel I write a review from a disabled person's viewpoint. The other good thing about a balcony is being able to open the door and air the room (if polluted with chemicals). I won't stay in a room that doesn't have windows that open as the smells are usually bad. I tell the staff not to wash the bathroom each day or change anything to try and minimise the chemicals.

A restaurant close to your room or room service is necessary for when you get bed-bound and unable to leave. In these cases a balcony is good and a view so you can enjoy the holiday as much as possible from your room. Breakfast I find a problems as it gets really hot in some hotel restaurants so try to eat in my room.

Take my chillow with me for cooling. Get my husband to buy drinks from outside and stock up the mini-bar with my own. Take cold baths if cannot get to the sea.

If you can get out of the hotel, once again be as comfortable as you can afford to be. Don't assume that there will always be cold water at hsitoric sights. Take your own. Sometimes there are taps you can fill a bottle up from.

I remember many, many years ago ( when I could walk) going to Pompei and seeing frozen bottles of water outside the site. There were no shops inside at all. My motto is that I always buy the frozen water now.

 

[August59]

I wish I could help, but my problem is that i can't stop sweating. The heat bothers me though and loose fitting, white (light coored) cotton cloths feel the best. I have a few shirts that have a covered mesh that works really good too. I have to wear "polarized" sunglasses cause the glare is very hard on my eyes, but I also figured out that not squinting (due to glasses) help keep me more relaxed. The squinting constantly was also causing headaches which have also gone away. I hope your trip works out and brings you some enjoyment since we don't get much of that these days.

 

[Sushi]

Hi Keenly,

Using a wheelchair (at least for travel) makes a huge difference. I just flew from Europe to the US and being in a wheelchair you were whisked through special lines, boarded first etc.

Also, check out getting a cool vest. I have an arctic heat vest that is filled with some sort of gel and covered in a non-allergic fabric. You freeze it then put it on when you have to go out. I also carry a small cooler with ice bricks to cool it again when it needs topping up.

A friend with MCS called the hotel ahead of time and asked them to clean her room with vinegar and water. She also took her own bedding.

Hope you have a good trip and some fun!
Sushi

 

[ahimsa]

I can't help you with any ideas for heat intolerance other than saying to avoid heat as much as possible. But you already knew that so that's not much help.

As for travel tips, my first thought is to ask for a wheelchair to go to/from the gate in the airports. This will help you save energy and you'll always have a place to sit down. Even if you don't get a wheelchair you should always ask for early boarding so you can get seated on the plane first. If they don't actually announce early boarding then you start to board when they call for first class passengers (explain to them that you have health problems).

Another option - actually, you could do this in addition to getting a wheelchair - is to carry a folding cane/seat with you. I carry mine on the plane. It fits in the overhead bins on top of the luggage.

The one that I have is from Magellan's travel store. You can use "cane seat" or "sport seat" with google to find a bunch of different brands but here's a link to the one that I have:

http://www.magellans.com/store/Health___Hygiene___Walking_AidsWA222

The little white rubber tips on the end of the legs have long since worn away but I replaced them with black rubber cane tips that you can find in at the drug store or pharmacy.

Carry a bottle of cold water with you everywhere. They never give me enough water on the plane so I take a refillable 1 liter bottle with me. Now that you can't take liquids through the security checkpoints in airports you have to remember to dump all water before the security check and then get more water on the other side of security. I refill my bottle from the water fountains but you could also buy a water bottle.

I have a mesh bottle holder with a shoulder strap from REI. It has lasted more than 10 years so far (starting to fray a bit now...):

http://www.rei.com/webservices/rei/DisplayStyle/755097

If I think of any more travel tips then I'll post them.

 

[caledonia]

I tried the cool vest but it made me feel worse/strange and didn't really work for me.

However, I do get good relief from a cool neck scarf/bandana. It's filled with little beads that absorb water. You soak the scarf in cool water, wait for it to swell up, then tie it around your neck. It's easy to carry, easy to soak, etc. The little beads make it stay wet for much longer than a regular neckerchief. You can find them online. They're cheap, might as well order several for all you and your family.

Of course a broad brimmed hat and wraparound sunglasses are essential for light sensitivity.

Carry a good supply of sea salt with you. Mix a couple pinches (1/4 to 1/2 tsp) in with any water you drink (or just make it pleasantly salty.) Any kind of salt will work in a pinch if you don't have sea salt.

Try whatever you decide to do out at home first if possible.

For the long term, it sounds like you have both methylation problems and adrenal problems, and that these would be good areas to treat.

I've been able to eliminate about 90% of my MCS with methylation treatment. I've also been able to tolerate heat better and start being able to sweat from preliminary adrenal treatment. I don't really have POTS (or it's very mild), but those kinds of issues are also related to adrenals. The mild POTS type of symptoms that I had are improved.

If you get to a place with an air freshener, remove it from your room first thing and let the place air out.

Good luck!

 

[TinyT]

Bring salty snacks with you (at least on the plane) for your POTS/ OI. That is, only if you can have salt & it helps you.

I travel with a tub of electrolyte mix. I think in the US it's called vitalyte. I also bring single mix sachets for plane use & emergencies. A big bottle of water is also a great idea.

 

[keenly]

Hi Keenly,

Using a wheelchair (at least for travel) makes a huge difference. I just flew from Europe to the US and being in a wheelchair you were whisked through special lines, boarded first etc.

Also, check out getting a cool vest. I have an arctic heat vest that is filled with some sort of gel and covered in a non-allergic fabric. You freeze it then put it on when you have to go out. I also carry a small cooler with ice bricks to cool it again when it needs topping up.

A friend with MCS called the hotel ahead of time and asked them to clean her room with vinegar and water. She also took her own bedding.

Hope you have a good trip and some fun!
Sushi

Hi
they can't guarantee what room we are in. Its a huge hotel and some rooms are for disabled people with walk in showers. We asked for one but they can't say for sure.

I am going to bring some sprays for allergies, dust mites etc.

the vests cost hundreds of pounds

I am looking for a comfortable wheelchair right now. The airport have them but i need one for over there.

cheers