Road Trips and ME/CFS

[EMilo]

Can I get your opinions on taking a road trip with this disease? I think I want to drive to California to see an ME/CFS expert doctor. Dr. Kogelnik is about 13 hours away and Dr. Chia (my preference) is about 17 hours away. My husband and I are thinking (if I can get an appt) of renting an RV (we have dogs).

In the old days, I could drive forever (I drove myself from Madison, WI to New Orleans, only stopping for gas! Those were the days ), but, now, my husband drives and I don't do well with pot holes and bumpy roads ~ mostly because of spine pain, chronic headaches and a neck injury.

My fear is getting worse from biting off more than I can chew (Laura Hillenbrand's relapse story haunts me). With an RV and a bed I can lie on, will I be able to drive 7+ hours a day (including rest breaks)?

Also, if I wanted to see a bit of California (ie: take the coast road, which is much longer, but might be heaven to someone who has been cooped up in the house for a year), am I insane to think I could be on the road for 9 or 10 days?? (money allowing)

I know you can't answer for me specifically, I'm just looking for opinions. Thank you!

 

[Valentijn]

Elizabeth Milo
If you could "edit" your post, select all of the text, and click on the little white eraser icon in the upper left corner, it will reset the formatting back to normal, with a text color and font size which can be read.

 

[SOC]

When daughter and I were the most ill we traveled 6+ hours each way to see Dr Lerner every 4-6 weeks. I was bedbound at the start, so it wasn't a trivial trip. My husband drove and daughter and I took turns sleeping in the back seat of the van. We usually stayed in the hotel -- and often in bed -- rather than doing anything resembling fun while we were there.

We didn't relapse severely from the travel, but we were very cautious not to overdo. And we were getting better from the treatment, so as time went on we were able to do more (although still not a lot).

If I were in your situation, I'd be extremely conservative with your energy -- staying horizontal during all the boring part of the drive and using a wheelchair for all activity outside the RV and hotel room. Just being away from from your controlled environment at home will use a lot more energy than you're used to, I'll bet, so the extra rest and energy conservation will be necessary. Sleep as much as possible.

Then I wouldn't worry about relapsing. Be conservative, but don't worry.

If you become a patient of either Dr Kogelnik or Dr Chia, you'll need to see them once a year by law (in order for them to keep treating you), so you'll get more chances to do touristy things.

 

[SickOfSickness]

Do you know how you handle car rides of 2 hours or more? I haven't traveled with a bed before, and I want to. I'm guessing 6 hours with the bed would be like 2 hours in the car, in terms of PEM.

But it would still be 6 hours, so it helps if you're good at occupying yourself so it passes quicker. A nap would make a big difference for me.

You mentioned headaches, how bad are they? Have you been on the road with them before, so you know what it's like? I have been in cars for hours with a migraine, and it made the trip seem so long and bad. I would rather do 4 hours without a migraine than 1 hour with.

I am guessing an RV would feel more bumpy than a car? Maybe it would be fine with a good RV.

For me it would also depend on my nighttime quality of sleep. Could I fall asleep in the RV if I'm not used to being there? Would the mattress and bedding be comfortable enough?

If I go on a trip, after my PEM builds up for 2-4 days, my energy is so low and my enjoyment drops a lot. But as I said, I never got to travel with a bed available.

Also if I know it's a longer trip, I would try to be more careful about budgeting the energy. Take those rest breaks the first days even when you are excited and don't want to take them. In some threads, members said they would prepare for the trip by taking extra supplements for a week, or resting a lot more. That seems like a great idea.

For me it depends on how much walking and standing I do, how much talking, how much raising my arms, etc. Another factor is could I eat as well when I'm on the road.

 

[peggy-sue]

How do you feel about being away from home - are you happy and relaxed in strange places with strange beds and "other people's" toilets?

(I'm never happy away from home. Holidays would be wonderful if I could only get back home to my own bed and loo and MY surroundings at the end of the day.)

I did do a long journey earlier on this year, to visit family abroad - driving (passenger!) and using the ferry.

I got very hyped up on a huge adrenalin surge, with all the excitement and social stuff going on, had a wonderful time, but am still paying for it.

But - I was socialising morning, afternoon and evening - very, very exhausting stuff. We did the journey in two stages, over 2 days and were there 4 days.

Doing the journey in a relaxed manner was helpful. Not staying somewhere too horribly stressful helped a bit.
Socialising for that amount of time was uplifting because of the wonderful folk I was seeing - but it completely did me in .

If you are happy and comfortable in motels (or whatever accommodation you can find - I don't know what an RV is), and you think you would enjoy the trip, could make a little "holiday" out of it, nice and slowly, then by all means - grab the opportunity.

Being stuck in one position in a car is not easy - I don't know about seatbelt regulations where you are, but it is pretty impossible to get comfortable with one on.

(I tend to end up with my feet up on the dashboard... to try to keep my legs raised!)

eta: Having read posts that were not here before, I now realise an RV is some sort of van with a bed in. That would be of great help, I'm sure.

 

[EMilo]

Elizabeth Milo
If you could "edit" your post, select all of the text, and click on the little white eraser icon in the upper left corner, it will reset the formatting back to normal, with a text color and font size which can be read.

Ok, I hope that worked. On my end, I couldn't tell that the formatting was messed up, sorry!

 

[EMilo]

If you are happy and comfortable in motels (or whatever accommodation you can find - I don't know what an RV is), and you think you would enjoy the trip, could make a little "holiday" out of it, nice and slowly, then by all means - grab the opportunity.

Quick answer to this and then more answers later: an RV is like a nice, big caravan (I grew up in Dublin, so I think I am translating correctly)

 

[peggy-sue]

Thanks!
We stopped off overnight in Dublin on our trip.
(heading from Dundee in Scotland (home) to Limerick and Thurles (other home) in Co. Tipperary.)

I was wondering if it would be possible for you to have a short trip, just to see how well you manage that?

Resting up well beforehand is always a good idea.

 

[Sushi]

Elizabeth Milo

Another question: I'd guess you would sleep overnight in the RV, not a motel? Motels kick you out at 11 am to 12 am and this is a problem if your sleep cycle is messed up.

If your sleep cycle is messed up, even if you sleep in the RV, your husband's preferred hours of driving could interfere with your sleep.

I drove across the country with a friend when moving and it was awful! But a lot of that was motels kicking us out early.

Personally for that kind of trip, I'd do better flying (with the use of an airline wheelchair), renting a car at the other end and seeing what you feel up to.

Sushi

 

[Hope123]

Pre-CFS, I used to travel a lot. I still do the occasional trip but good planning and slowing everything down is imperative.

1) Somewhere in your posts, you said "drive" and it seems like everyone posting is assuming you're only "riding." I would caution against driving much since that will take away your energy. Driving is actually a very intense mental activity -- most people don't realize that but it's been shown in studies -- it requires quick reaction time, ability to focus on several things at once (people crossing, cars turning, etc.), and endurance for long distances. Personally, I can't drive much before it makes me fatigued.

2) Quality over quantity. Don't try to stuff too much in one day. Pick one or two low-level activity things you want to do and leave it at that. Some activities that might be low key include things like watching a play/ concert or trying different types of foods unique to the area (if you can tolerate those activities).

3) I've done the drive from Seattle to SF and LA before. If you're doing I-5, it's less scenic but quick. If you're doing 101, it's beautiful but slower than you might think or get from Google -- the roads are windy and sometimes narrow, there is thick fog some times of the year, etc. You can do a little of each as well. Our family has done this drive at a very, very leisurely pace -- e.g. only 3-4 hours on the road a day and sometimes 2 days in one place -- so we can enjoy it.

4) If you do stay in a motel/ hotel, ask them beforehand about late check-out. Some do it free, others might charge you an extra fee but everything is negotiable.

Also check out "alternate" accomodations -- there are some beautiful and cheap hostels and, believe it or not, monasteries, you can stay at along the way. For the latter, one does not need to be religious to use them although they might have rules like a curfew. Both are on some magnificient properties; e.g. hostels on national park lands, right on the beach, etc. Some hostels have private rooms and others have extra amenities -- like free tours, in-house events, cheap bike/ kayak rentals. (It's no longer only for college students; some can be upscale -- my parents particularly like the hostel in Denmark that I booked for them.)

Other option -- check out Airbnb.

5) Pro tip: Check out travel books at the library beforehand and bring them with you on your trip. Alternatively, if you have a Kindle or other device, download free travel (and other) books prior.

6) Considering skipping the drive -- other options are plane and Amtrak. Amtrak is nice and scenic -- lots of views along the coast -- but more expensive than airplane. One thing about Amtrak -- many interesting cities along the way, you can stop for 1-2 days and then re-board to continue your trip. You can also combine -- e.g. leisurely drive down via rented car, fly back up allows you more time.

7) Bring warm clothes....esp. layers you can take on/ off. Beaches may not get warm until you get past Santa Barbara this time of the year.

 

[SOC]

[
Personally for that kind of trip, I'd do better flying (with the use of an airline wheelchair), renting a car at the other end and seeing what you feel up to.

That's my experience, too. If I'm traveling with my husband, flying can be a lot easier as long as I can do the trip in one flight. Changing flights and the associated increased risk of problems developing can be a huge problem for me traveling. Stuck in an airport for hours that is neither home nor destination and has nowhere to get horizontal is a nightmare for me.

However, if it's a one flight trip then I wheelchair through the airport at both ends to conserve energy. If I'm not feeling my very best, I'll wear noise-canceling headphones and listen to an audiobook with my eyes closed. Poor hubby just carts me around like luggage.

 

[Little Bluestem]

An air mattress or gel pad (for hospital beds) put on top of your RV mattress might help cushion you from the pot holes and bumpy roads.