• 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 (FM), 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.

Tips for Traveling - Lannie In the Lymelight

IntuneJune

Senior Member
Messages
562
Location
NorthEastern USA
Oh those masks

Enjoyed reading your blog.

When we travel, my husband also wears the masks....his getting sick would put me in jeopardy. So there the two of us sit with masks on. We have had the third passenger in our row move to another empty seat on the plane to get away from us!!!!! Yeah, more room!

I have celiac and must eat gluten free and really live in fear while traveling, try to bring my own food. So I had not checked out fast food, I don't eat there while at home....so was not familiar with Wendy's chili. Hmmmmm. That would be a good option for me.....I need that protein also.

Thank you ! I am traveling by air today, after dodging the hurricane in our area.

June
 

Kharren

Hopeful opptomist
Messages
19
Location
Hermosa Beach Calfornia
I am going on a trip for the first time in 7 months. Have moderate to severe ME. Good days and not so good days, with myalgia pain and brain fog as a natural part of my days. I have read several posts about tips for traveling with ME-CFS and those are helpful. Have a wheelchair all set for both flights, non stop, traveling with a friend for luggage support and have my mask ready. Will have plenty of healthy food and my meds packed. Will be gone for 2 weeks with resting places to sleep and enjoy along the way. Wish me luck. Any special tips you can share?
 
Messages
15,786
Any special tips you can share?
Economy comfort or similar is a cheap upgrade which can be extremely helpful. If you're behind the bulkhead in the center, there's plenty of room to prop your feet up on your carry-on, or just wedge your feet against the wall.

If the closest toilet is at the back of first class, let a flight attendant know that you're disabled and can't walk far and ask if it's okay to use the first class toilet during the flight. They'll ask the flight attendant boss, but I've never been turned down. Best time to ask is during the disabled pre-boarding.

Make sure you wait for them to bring a wheelchair, and that you get pushed up to the door of the airplane. The jerks at the Amsterdam airport put me on a cart once, which meant I was dumped at the gate. So it ended up being too much walking and standing, though the gate security guy did see me looking ready to cry while I was standing in line, and got me through faster.

You're supposed to wait until everyone disembarks before shuffling off the plane, but I've had my reserved wheelchair disappear that way before. So get off as soon as you know you won't have to be standing too long before getting to the door.

Try to keep one leg up as much as possible. My heart rate monitor shows that it helps a lot, and it can be done while in a wheelchair or even in your airplane seat by propping one leg up on the other thigh.

Be extra conscientious about avoiding all exertion. It's easy to think that we should be doing a little bit to make things easier for security, etc, but it really adds up when traveling. It's a time to compromise less on pacing, not more.
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
I just learned something interesting from a man on a flight the other day. He said Jet Blue reserves a row directly behind first class for disabled people, then you are first off the plane and onto your wheel chair.

I've had stolen wheel chairs before... A friend had to push me herself through Honolulu airport due to no more wheel chair attendants. Not an easy job when you aren't paid to do that daily!