Need travel tips for urgent trip

[lllamamom]

We've had a death in the family, and it's going to require a 5 hour flight cross country, with one plane change each way. When I flew in January, I came home and had the worst PEM crash I'd had in years--it truly frightened my husband.

This time, there will be little rest, unless I can manage to have someone take me back to the motel. To give you an idea, the "family dinner" will be 40 people. Don't know about anyone else, but just that many people will trigger problems.

On the positive side, being back on Valacyclovir is helping mitigate some of the symptoms. Also, I found a hemp-based CBD oil (therefore legal to travel with) that knocks back the pain.
On the negative side, getting ready--the packing, cleaning, organizing, etc that I have to do, while dear supportive hubby deals with the rest of the realities--is scaring me. I've already started--we leave Wednesday.

Any and all tips, tricks, ideas, I will gratefully absorb and use, and report back. I have found a wonderful collapsible water bottle, so I'll stay hydrated, and thankfully, my gut loves Belvita high protein breakfast bars. I have a compact blanket that I can use for staying warm (does anyone else freeze on planes?) or supporting my back/legs. I use wheelchairs in airports, where normally I walk with a cane, for short bits.

Thanks!

 

[Mary]

@lllamamom - traveling is rough on me too. I was going to suggest wheelchair assistance in the airport - I have them pick me up at check-in anhd I get wheeled through security (no standing in line) and then wheeled to my departure gate, and then picked up right on arrival. It helps, though I still crash; there seems to be no way around it.

I take protein bars too, I always make sure I have some with me and have water with me too. You're doing all the things I do.

If you can rest at all while there, of course that would be good, and the more you can rest, the better, which you know. I'm guessing that most of your family probably don't "get" ME/CFS so you might have to plead just feeling unwell and ask to be taken back to the motel.

BTW, BCAAs (branched chain amino acids) have cut my PEM recovery time in half. I still crash just as easily, they have not extended my activity window, but I recover a lot quicker, which is huge. You might look into this or other PEM busters.

You might try CoQ10 and grapefruit juice - the combo has helped some with energy. http://forums.phoenixrising.me/inde...l-coenzyme-q10-well-see-about-tomorrow.57751/

Good luck --

 

[Sushi]

I was going to suggest wheelchair assistance in the airport - I have them pick me up at check-in anhd I get wheeled through security (no standing in line) and then wheeled to my departure gate, and then picked up right on arrival.

I do this too. Trying to walk those long airport concourses can be impossible. You and your hubby will get to board first. Every little bit of energy saving helps. Best wishes.

 

[Cort]

https://www.healthrising.org/blog/2015/06/06/tips-for-travelling-with-mecfs-andor-fibromyalgia/

 

[SickOfSickness]

For the packing portion, you may want to try some supplements to reduce the PEM. Some are here: http://forums.phoenixrising.me/inde...a-sam-e-catalase-no-pem-after-exercise.34446/

I know how it goes, you can already be in PEM before you leave

Good luck.

 

[Lisa108]

For the journey: compression stockings, earplugs/headphones, cushion, eye mask.
For the event: number of cab service to drive you to the motel when needed.
At home: prepare for some "lazy" days after the trip (enough easy-to-prepare-meals, clean clothes; no appointments)
Sorry for your loss. Safe journey and take care!