• Welcome to Phoenix Rising!

    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

LONG HAUL FLIGHTS & their effects please

coxy

Senior Member
Messages
174
Hi, mad we probably are, but our extended family are all going to Florida at the end of March. We've had to cancel the same holiday in the past when our daughter got ME/CFS & promised all the children we'd go another time. Seven years on, and 2 more family members with ME/CFS we felt we'd go for it.
Anyone who knows florida/orlando will know it's a very tiring holiday at the best of times, let alone with ME/CFS!
We've planned to have a lot of rest days & are using the disney disabled system so we don't need to stand in queues.
We have my parents and sister along to help aswell.
Even so i'm starting to get nervous about coping with the flight.
Has anyone else gone on long haul flights, any tips, or things to avoid please.
If anyone has taken a holiday like this, any tips in the theme parks would be appreciated.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Has anyone else gone on long haul flights, any tips, or things to avoid please.

I did a cross country flight while still in the high symptom phase. I asked the airline for a wheelchair--fantastic! They meet every connecting flight, take shortcuts through long lines, etc.

I recommend this. Also, take an empty water bottle in your hand luggage then fill it up after you go through security. They charge big $$ for water on planes and on the other side of security--and dehydration on planes is our enemy. Also pressure knee socks or stocking will help a lot for those who pool blood in their legs.

Sushi
 
K

Katie

Guest
I've done one long haul but I was 85% and gloriously loved up as it was our honeymoon. I took sleeping pills on the flight though I didn't completely fall asleep it helped a lot. Rest when you can at the airport, take earplugs, eye blindfold and use them when you can. Expect some pay back but (now this isn't sensible ME advice this is sanity advice) adrenaline can get you a long way if you are willing to accept the payback. When you're doing something as special as Florida then make as many memories as you can, just maybe get earlier nights and remember sleep hygiene.

I tend to do better in warmer weather so you have that in your favour, just rest, rest and rest when you get back home and enjoy the happy memories :)
 

IntuneJune

Senior Member
Messages
562
Location
NorthEastern USA
While traveling I wear a mask on the plane since I have a depressed immune system. Also keep feet, legs moving at intervals. Ankle circles, rolling foot up on toes, back on heels, lift both feet off the floor, shoulder rolls feel great, head turns to the right and left, ear to shoulder, ANY movement you can think of doing, do it. Repeat your "routine" at intervals.

Water, water, water.....

On the days I rested from trekking Disney Parks, I submerged my body in the pool and hung out, stretch in the pool.

Good for you, you are going!! This is one of the best things you could do for your family, you are creating memories. Even if folks get tired and cranky, those emotions will fade away, and you can look back on your vacation with fond memories.
 

acer2000

Senior Member
Messages
818
Well I am not sure where you are flying from but since I have been sick I have dealt with flights the following ways:

- Book direct flights at reasonable times (ie not a 6am flights with 2 connections)
- For really long flights, upgrade to first class if you can afford it, or use frequent flier miles to do the same (sometimes you can use 10,000 miles to change an inexpensive coach ticket to first class). Or try to get an aisle seat or a bulkhead seat with more room.
- Pick destinations and vacations that are easy. ie Hotels that are easy to get to, are quiet, have comfortable beds, etc... For example, a trip to a resort beach is more relaxing and easy than a trip to New York City or another "active" place.
- Buy travel insurance so that if you get too ill to stay on vacation you can leave without a huge penalty.
- Don't stress about flying. I typically don't get anxious about flying, but if you do you need to plan ahead and find strategies to deal with it. Take a xanax if you have to. Stress makes being sick worse. Traveling causes stress. So just let things go and it will be easier. Don't get mad at people in the airport, don't get annoyed by secuirty, delays, etc...
- Bring earplugs on the plane. I use these kind they sell at CVS called "earplanes". They reduce the sound but you can still hear. You can even use them in loud/busy places if you have sensory overload.
- Bring an eye mask for the hotel/plane so you can sleep.

Unfortunately none of these things lend themselves to inexpensive travel. But if you try hard enough you can usually make trips easier on yourself.

I'm sure you know this, but Disney vacations aren't typically all that relaxing. Perhaps you can stay somewhere that has easy access to the parks and a nice pool so you can hang back if you are tired.

Also I have found cruises to be about the easiest vacations you can do. Once you are on the boat, you basically don't have to do anything. You can stay in the room the whole time if you feel like it, you can eat whenever you want and there is a large variety of food, and you can go by the pool on the boat, go to the spa, etc... you dont have to get off the ship in the ports if you don't feel like it. THey basically do everything for you. And there are some killer deals on cruises if you don't go during the christmas holiday.