Traveling with M.E. (to the South Bay)

So, you have been on the waiting list for the ME/CFS Clinic at Stanford forever and finally your number has come up!

The tips below come from my personal experience traveling solo to the South Bay with ME. The South Bay refers to the region around the southern end of San Francisco Bay, and includes Palo Alto, Stanford, Menlo Park, Mountain View, Sunnyvale, San Jose, Santa Clara and many more.

I travel monthly to Stanford and/or Mountain View. Here, I provide a few travel tips specific for this region but much of what I share could be applied to long-distance travel in general. I should also add that I spent the last 30 years in the Bay Area and have a fairly good sense for the region (though never lived in the South Bay). I now live in Reno, NV. I am ~ a 20 on the Bell scale.

Everyone is different and I am sure there are some clever tips I am missing here. Please feel free to add yours in the comments below!

Getting there

Think carefully about trip times. Flights that are too early are taxing, as are flights that are too late. I recently took a cross-country flight that started at 7 pm. Not a terribly smart move!

Be sure to check where your appointment is before booking accommodations. Appointments with Stanford Medicine can be in any of number of locations, including the main Stanford campus, Menlo Park, Atherton, Redwood City, and more. Don’t assume your appointment is on the main campus. This might help you decide which airport you fly into and which hotel to book.

When flying to the South Bay, there are three main choices: San Francisco, San Jose, and Oakland. San Jose is the easiest airport to fly into (IMHO) because it is the smallest. Well, OAK is probably about the same size, but is much farther from Stanford. Traffic can be a bear between San Jose and Palo Alto so be sure to give yourself lots of extra time. As a general rule of thumb, I multiply the time it would take without traffic by a factor of three for any of the airports just to be safe. For example, for the San Jose airport I leave about 45 minutes to an hour for travel time, depending on time of day. I consistently find cheaper flights into San Jose, but that could be due to my point of origin. SFO, which is much larger, will have more flights, but it is too difficult for me to manage when I travel solo. Traffic is usually OK-ish on I-280 (which is the best route to Stanford from SFO, via I-380). So, it is a matter of personal preference – I like flying into San Jose for the ease. It is also vastly easier to rent a car from there. Traffic can be a nuisance any time of the day so brace yourself.

What I pack for the plane:

• Water bottle
• Coconut water
• Something really salty (crisps, nuts)
• Dark chocolate
• Peppermint oil to put in water in case my stomach hurts, which it invariably does
• Ginger chews for nausea
• Barf bag (yep, I travel with my own lol)
• Compression hose
• Layers of clothing, including a shawl for warmth
• Noise-cancelling headphones – single most important thing! Bose are the best but very $$$!
• Ear plugs (sometimes I wear them with my headphones!)
• Salt
• Hand sanitizer (I am sensitive to Purell and most soaps so I pack my own)
• Woollip pillow – this pillow is great for people with POTS and orthostatic intolerance (OI) in general. Airplane seats do not recline back far enough to accommodate OI. The Woollip pillow is a tower-like pillow that allows you to lean forward and rest your face into the pillow (while still being able to breathe!). Great for coat-hanger pain, too. It is a real life saver if OI gets bad on the plane. I recently had to travel without it and spent half the time doubled over in my lap to manage the situation (I have EDS, so luckily I can fold up into a pretzel).
• Snacks (I usually take along something like Cocoroons and kale chips or something else ridiculously healthy)
• A supplemental power source for phone or tablet might come in handy for longer flights
• Migraine meds and Advil
• Magnesium oil
• All prescription medications and/or filled pill box. I have NEVER been asked about my meds at the airport

Some other great suggestions from readers:

• Socks
• Lipbalm
• Lotion
• Eye mask
• Important medical paperwork
• Lumbar pillow

Other tips:

• Arrange for wheelchair service. I always make sure I have tip money – wheel chair attendants are some of the nicest folks around. Arranging for a wheelchair is the single most important thing that I do when I travel for a whole bunch of reasons, the most important being that you are taken to the front of the security line and given assistance to get through it. This saves on time, stress, and standing.
• Consider bringing a rollator/walker. It serves as a packhorse and can hold your carryon bag, purse, computer, etc. without causing strain. Also provides a handy seat when needed. I check my electric wheelchair (but have to lug the 15 lb battery in my carry-on bag) and hold my walker on my lap while being pushed in a wheelchair by airport attendants.
• For longer flights I arrange for in-flight oxygen. Airplane cabins are a low-oxygen environment, which can place a greater stress on ME bodies. Oxygen helps me to arrive in better shape and is a must for international travel. Call your airline for specifics. There is usually a form that needs to be signed by your doctor.
• Download something from Netflix before leaving.
• Give yourself loads of extra time to get to the airport. Keep stress as low as possible.

Things I take with me to the hotel/Airbnb:

• Pillow case (I am very sensitive to fragrance and fabric textures and do best when I have my own linens)
• I purchase water and dinner after landing and before leaving the airport in case I am not able to go out and get good food or water that first evening
• Favorite teas
• Robe and slippers – I bring these items everywhere so that I feel some continuity with home and have some creature comforts
• Other special food items (grain-free granola for me)

Transportation on the ground:

• Most of the time I cannot drive and have to take Uber/Lyft. The downside of Uber/Lyft is that ~80%+ of the drivers have air fresheners in their car, which causes instant migraine for me. It is impossible to know which drivers have unscented cars.
• If you take Uber, be sure you have downloaded the app first!
• Uber is cheaper than a cab.
• Car rental is my preferred option when I can manage – it is cheaper (Uber fares really add up!), has no fragrance, and offers vastly more flexibility.

Accommodations (specific to the South Bay of California, where many with ME/CFS travel for medical care):

There are three main strategies:

1. Hotels
2. Stanford Guest House
3. Airbnb

Hotels are extremely expensive during the week, but some weeks are worse than others. One hotel I stay at (Creekside Inn) ranges from $110 to $700/night, for the same room! It’s all about supply and demand in the South Bay (when you recall that the South Bay is home to the Silicon Valley the prices make more sense). I start with Kayak.com to get a feel for prices the week of my stay. If it is expensive, I opt for Airbnb, which is substantially cheaper than hotels on most days. And quality is far better. Some people like the Stanford Guest House and it is often cheaper than hotels (I have never stayed there). For the money, I prefer Airbnb because I get a kitchen and more amenities than a hotel or guest house can offer. Airbnb’s are superior to most hotels because you can open windows and have natural air. You can easily pick up a very nice Airbnb near Stanford for about $150-180/night. Places get cheaper as you move closer to the bay in East Palo Alto. ALWAYS check to make sure there is on-site parking and any other amenities you may need.

Some hotels and the Stanford Guesthouse have shuttles that will take you to your appointment and pick you up.

If you can score an Airbnb in the Allied Arts neighborhood in Menlo Park you will have found yourself a little slice of heaven very close to the University.

I have recently started staying at Airbnbs in East Palo Alto. I had stayed away from that area because I was afraid it would be noisy near the freeway – it is not. It is also an area where you will find the best deals. However, I would not stay there if you have an appointment before 9:00 am, or else leave a lot of extra time to get to the university. Despite it only being 3 miles away, it is a long 3 miles during rush hour.

Nine times out of 10 I stay in an Airbnb unless I am flying in for one night and hotel rates are reasonable. For Airbnb to be economical I usually find I need to stay for at least 2 nights, due to the cleaning fee. Even then, most Airbnbs are cheaper than hotels.

There is one flip side to staying in an Airbnb I learned the hard way recently. It is really important to check the cancellation policy, which is determined by each host. If you need to cancel due to weather or health problems, this can present a problem if you are past the cancellation date. Trip insurance might be wise in any case. Or, book a hotel if you are uncertain about being able to make the trip.

Where to eat!

My food strategy is to stick to a few places that have really healthy and nutritious food nearby. I am also on a quest to find the best Indian restaurant in the South Bay. This effort is ongoing (somebody please help me cut to the part where I find the best one?).

The Stanford Shopping Center, right at Stanford campus, is where I get most of my meals. My all-time favorite is True Food Kitchen. It is a little pricey, but the Kale-aid is restoring. The kale Caesar is otherworldly. I could gush on an on but I will make myself too hungry. Most days I also can choke down some Chipotle. There is a little market in the shopping center called Sigona’s Market where you can get food and drinks to take back to the hotel/Airbnb. There is a Whole Foods and Trader Joes across from campus. University Avenue has so many excellent restaurants, as does California Street. If you are staying further south, like in Mountain View (I also get medical care there and stay a little further south for those appointments), you will find no shortage of amazing restaurants. If feeling a little more adventuresome, check out Santana Row in Santa Clara. I can only manage this when my family travels with me and I am doing quite a bit better.

What to do:

I will admit to not having much to say here, simply because it takes every ounce of my energy to manage these trips and even then I barely manage and am always set back for a while following travel. It is a shame, really, because there are so many fun things to do in the South Bay! The Rodin sculpture garden and museum at Stanford provides a lovely and peaceful place to visit. Santa Cruz is 30 minutes from San Jose “over the hill” on CA-17. A really fun trip is to go to Santa Cruz (where I did my undergraduate degree) to watch the surfers, then drive north along the coast to CA-84 through Woodside. Again, this would require a well person.

My son and I recently had a blast visiting the NASA Ames visitor center and the Moffet Airfield museum. The museum, in particular, was really worth the visit.

Safe travels!