Need advice for long-distance car traveling

[Anncomingtogrips]

In January, I'm traveling 10 hours by car to go to Ithaca College for a CPET and then to NYC for additional testing and an appointment with my specialist. My partner is driving.

I am concerned about the amount of time in a car on PEM, orthostatic intolerance, and fatigue. I had hoped to be able to lie flat in back of a van/SUV, but google searches indicate that isn't safe. I usually have 2-4 hours of upright activity a day.

I realize some people in our community may not be able to travel at all or require ambulance transport. For those who are able to find a way to travel, I welcome any advice you may have. Thank you!

 

[xebex]

I simply couldn't do that amount of upright travel, but when i do travel i periodically roll the seat down so i can lie more flat, i can manage about 2 hours (1 hour there and back by doing this). What is the purpose of your CPET? What are you hoping to find out by it? I believe it is a case of weighing the risks with how much you are actually going to gain from the visit.

 

[SickOfSickness]

Seems like your ability to tolerate things will be different after the CPET Maybe not immediately.

I have sometimes laid across the back seat with a seatbelt (loose, but on). It's not completely flat but was kind of ok. With some kind of padding to help even things out.

 

[Anncomingtogrips]

The CPET is largely to gather evidence of ME/CFS for long-term disability insurance. It is frustrating that I may damage myself in the process of trying to get this information. I'm also going to do an upright MRI in NYC to look at cranial settling/brainstem issues. And yes, I'm expecting the drive home will be harder.

 

[xebex]

Wow that is super tough that you need it for insurance I’m not sure that it’s the only way to get a diagnoses though, as not everyone has access to it but still have a diagnoses. The diagnostic process shouldn’t have to be damaging. But yes getting stand up MRI could be worth it.
I mean lieing down in the car isn’t safe but I wonder what other choice you have? Renting a camper van maybe?

 

[Rufous McKinney]

I have sometimes laid across the back seat with a seatbelt (loose, but on). It's not completely flat but was kind of ok. With some kind of padding to help even things out.

Yeah, there is a type of contortion where one can do that. And how much of a bulge in the middle do you have.

The obvious solution...would be to take your time and don't do it all in one day. Thats easy to say. Stay overnight?

Would you CPET results be altered if your crashing from the car ride?

 

[bensmith]

I know a van and a bed ive seen on youtube. Maybe you could rent a uhaul? Its not safe but neitjer is pem.

could you change insurance?

 

[Rebeccare]

Long car rides are really tough. I can tolerate about the same amount of upright-ness as you, but most years I go on a grueling 9-10 hour car ride to visit my extended family.

I often bring a lot of pillows with me and sit in one of the seats that's right against the side of the car. I pile up the pillows against the side of the car so I can lean on them instead of having to hold myself upright.

Thigh high or waist high compression stockings might help with the orthostatic intolerance, along with staying hydrated.

If you're not comfortable with lying down while driving due to safety, maybe you can park at a rest stop every few hours so you can lie down in the stationary car for a little bit? Whenever my family stops for lunch or a bathroom break, I take advantage of the stop to put my head down and my feet up. It's a bit harder when it's cold out, but maybe you can bring a lot of blankets too.

I also found that listening to music or reading a book is helpful because it takes my mind off thinking about how much I just want to lie down on the floor!

Stay overnight?

If you feel comfortable staying overnight someplace, breaking up the trip up over a few days would definitely make it easier. But I certainly understand if that doesn't feel safe right now.

I wish you good luck with all of these tests and appointments! I hope that you can think of some way that you can reward yourself when the journey is over. It always helps if you have some small reward that you can look forward to, even if it's something as simple as big bowl of ice cream or a day of binge watching a favorite TV show.

 

[Davsey27]

Maybe break it up into shorter drives that you feel you can handle

 

[leokitten]

I agree, I know it costs more but I always break up the trip in as many segments as needed and stay in motels. For a 10 hour car trip i would break that into two segments with overnight motel stay.

 

[Davsey27]

The CPET is largely to gather evidence of ME/CFS for long-term disability insurance. It is frustrating that I may damage myself in the process of trying to get this information. I'm also going to do an upright MRI in NYC to look at cranial settling/brainstem issues. And yes, I'm expecting the drive home will be harder.

Im not sure the severity of the cfs,but perhaps having someone with you to assist with activities of daily living if its a two day test may be a good idea as the test can cause pem

 

[nyanko_the_sane]

Here is a list of things that work for me and my friends:

Compression socks or stockings
Salty snacks and lots of water
Plan rest stops if needed
Dark sunglasses
Blood pressure monitor

I find that I can not comfortably sleep or rest upright. I become extremely fatigued after a 2 or 3 hour ride.

You can put a small airbed in an SUV, but it is not recommended that you use it while the vehicle is moving.
https://smile.amazon.com/FBSPORT-Inflatable-Mattress-Universal-Extended/dp/B01EKT08U8
There are a number of types and configurations.

It was suggested for long flights I should use an oxygen concentrator. I haven't flown anywhere in quite a while.

 

[Anncomingtogrips]

Thanks so much for all of the suggestions in the posts. I've ordered the airbed - didn't know they had configurations to make use of the leg room space (apparently can be used in cars as well). We are renting an SUV with the hope that I have more options and reclining than in a prius.

 

[Wishful]

"Scotty, beam me up, then beam me back down over there."

... and while you're at it, please edit the ME out of me.