How could one travel around the World with our condition?

[machenza]

Dear Friends,

It has been only 7 months for me, and I already progressed quite a bit. As some of you might know, I am in Japan and the only care available to me is mainly in the military hospital. With that said, I have not been tried in any steroids yet, and I have started the vegan diet with some juicing in it too.

In the past I traveled at list once a year to go see family in Europe or back to US. Now I wonder how that is getting done with Sjo, since my eyes are dry even in 70% humidity, and so is my nose, throat, and my mouth/lips.In the best case scenario I am looking at 12 hour flight before I get out of the plane, and perhaps 20+ with the connecting flights and security. I will appreciate every advice on preparation, things to take with me, and practical flight survival tips.

P.S. I feel so trapped on our little island 

Thank you,

Nellie

[Carolina]

I've traveled to Hawaii, China, France, Cuba, all with Sjogren's, lugging a ton of medications, sprays, lotions, what have you.

You're allowed to take that quart bag of liquids (sprays) on board.  So I can spray my eyes and irrigate my nose (Nature's Tears and Simply Saline). 

I always carry on my meds, and take more than enough for the entire trip, in case I get stuck for longer than planned.

Some people even get antibiotics to take with them, if they have a problem with infections.

It can be done, just takes lots of planning and patience.

Bon Voyage!

Hugs,  Elaine

[katie1111]

I just returned from a one month trip to Dubai, Turkey and Greece.  Most of my friends thought I was crazy to go and my doctors were skeptical.  For me, much of it was "mind over matter" and the mind is very strong.  My husband and I love to travel and since I have been sick, we have modified our vacations - not eliminated them. Planning is the key.  Read the brochures carefully and find tours that allow you to remain behind if you are not feeling well. Cruises work great. Trains are also good. Tours where you remain in one city for several days also work.  Look for tours that have activities in the morning and optional activities in the afternoon and evening.  I am usually good for about 4 hours of touring.  If you are changing time zones allow 2 or 3 days to adjust before beginning your tour.  Accept the fact that you might not be able to participate in all activities and enjoy the ones you can.  I brought a mini IPad loaded with books for the times I needed to rest.  The change of scenery is energizing.

As for the plane ride.  Carry all your medications with you.  Choose an aisle seat so that you can move around.  Drink lots of fluids even if it means frequent potty breaks.  We have often broken long trips into 2 days with rest in a hotel.

Most important is the mind over matter part.  Concentrate on what you can do - not what you can't.  Even if you can't do everything, you can see and enjoy many new experiences.

Staying at home feeling sorry for yourself is debilitating in itself.  Keep as active as possible by concentrating on the "can do's" and not the can'ts.  This is difficult, but well worth the effort.

[machenza]

Thank you Elaine and Katie,

Thank you for sharing your experience. It is nice to see that someone has done the long distance traveling. I am not going right away, but want to know how it is done. I will work on the "can do" attitude until I am mentally ready to make the trip.

Hugs, Nellie

[Thea]

Great thread for me. We usually manage one overseas trip every couple of years. In the past this would involve a fair bit of moving around and hiking. I've been amusing myself trying to figure out a trip more suitable to the new me, but that lets DH do all the stuff he likes to do.

I've always "been prepared" flying with eye drops, saline spray, and grapes! (refreshing and easy to eat). And I've always asked for an aisle seat and get up and down a lot. But Katie's extra tips have been noted! I think for us we'll look to renting a place somewhere and staying put rather than travelling around a lot.

[warmwaters]

It's tough. I use to travel around the world (mostly for work), but loved to travel for pleasure as well. I have a lot of fatigue, which is why it's gotten tough for me.

If it's mostly dry eye/dry mouth, you can deal with it by carrying what you need in your carry on. You can bring an empty bottle and fill it once you are through security. Be sure to bring all your meds through security.  Bring eye drops and use them frequently. If it's a long haul flight, I try to get some sleep anyhow, so I use the eye mask as an excuse to keep my eyes closed for a while... helps with the moisture problem.

If you do have fatigue, think about how to work around it. I now use the wheelchair service at airports to get me to and from the gate, as I have a hard time walking for long distances, and have a hard time standing for a long time (like in lines). If you are traveling with someone who is willing to drive, you can get closer to where you want to go.  I bought a very light weight wheel chair so that we can just throw it in the car and use it as needed.

Hope you find some decent work arounds.

[Thea]

When you say "wheelchair service" do you mean those automated cart things that an employee drives? I'm just wondering how you get ahold of one when you need it.

Two years ago when we came back from Spain we did a sprint through the Toronto airport to make our connection. No way I could do that now. So I'm also thinking give oodles of time for connections.

[warmwaters]

When you book your flight, you indicate that you need wheelchair assistance.   

Then when you check in you remind them. Usually there is a short wait near where you check in, and someone with a wheelchair will come and get you, take you through security (usual security rules still apply), and then to your gate.

When you get off the plane, there should be someone with a wheel chair or what I think of as the "beep-beep" carts who will get you the baggage  claim (and through customs, if needed).

I usually tip the person - in some countries they won't take a tip, in some places they are very pleased to.

If you have connecting flights, make sure you have plenty of time between flights. I once got in a little bit late in Chicago, and had a tight connection, and the guy running the beep-beep cart wouldn't go til he had a full cart, and then drop people off based on gate #, and not on flight departure time.  So I ended up delaying the other plane's take-off, which I found very embarrassing.

Just in general, build in more time.

[JettKat]

When I have a long flight I find that my lungs are affected the most. It gets to the point that my chest burns when I breathe and I feel very panic-y.

Since I live in a very humid environment (S TX) I have found that if I carry a wash cloth and dampen it in the sink; I can lessen the stress on my lungs by breathing with the damp cloth loosely covering my mouth for a few min every hour.

This is the only way I can keep the burning at bay.

I also use eye ointment like nobody's business, even in everyday life.