This disease can make travel a monumental task for many of us.
Despite our best efforts, once we leave our “safe zone” & we’re out in the world, we are at the mercy of our mast cells and believe me, there’s nothing worse than being sick with mast cell disease when you’re away from your “safe zone”!
For this reason alone many of us, myself included, avoid travel as much as possible. There are just too many risks involved so the reward has to be something pretty great now for me to go too far.
Travel (as in moving our bodies in a general direction) itself can even trigger us (haha, thanks universe!). The long walks to departure gates, the standing in lines, lugging around bags, the car or plane’s vibration, altitude changes, temperature changes, jet lag. I could go on and on! These can all be mast cell disease triggers.
We’re also limited by what we can eat so we have to work around that and a lot of other things to try to make travel as safe as possible for ourselves.
With a little help, it can be done, though, so here are a few tips I’ve learned along the way so far.
Tips for traveling with MCAS:
- Layer your clothing to stay at a comfortable temperature. Use fabrics that don’t make you sweat or itch.
- Wear shoes that can be loosened or easily removed. Extra socks to keep your feet warm are a good idea, too.
- Take long breaks whenever you can to get away from the vibration of the car or altitude changes, etc. if they trigger you.
- Take extra doses of meds if you need to (talk with your doctor first).
- Plan everything as far ahead of time as possible to eliminate stress and anxiety.
- Bring extras of your own shampoos, soaps, cleansers, etc.
- Make plenty of safe foods to bring on the trip. Locate grocers who carry your mast-cell friendly necessities ahead of time and make sure you can get to what you need easily.
- Adjust activities and tourist destinations accordingly. Low key, less populated areas, etc. may be best.
- Have your ER Protcols filled out and up-to-date. Same with your MCAS Wallet card.
- Make sure you have your medicines filled and plenty to take with you for extra doses. For long stays transfer your prescriptions if necessary.
- Bring any emergency meds you’ll need just in case (Benedryl, epipens, etc.).
- Make sure you have your Medic Alert bracelet up-to-date and on you.
- Tell people where you’re going and tell those you’re with about your condition.
- Call ahead to the local hospital where you’ll be staying to ask if they can accommodate you in case of an emergency.
- Find a local immunologist who is familiar with MCAS if you will be staying for an extended period of time.
- Bring your own towels, pillow and blanket to avoid borrowed items having laundry detergents and bleach triggering you. Bring your own laundry stuff, too.
- If you’re traveling with others, have someone go in ahead of you into the hotel room to air it out (open windows, turn on fan) and set the thermometer at a comfortable level right away.
- If you are going to a theater or event arena, position yourself near the restrooms in case of sudden “issues” with bladder or intestines.
- Avoid restaurants and “unsafe” food sources as much as possible. Plan to go where there’s fresh, organic food available if you do eat out while traveling.
- Let anyone going with you or meeting you at your destination that you need them to go easy on the perfumes/colognes/etc. (don’t be afraid to voice your needs – remember, it’s your vacation so you need to be allowed to enjoy it!).
- Have an emergency “exit plan” in case you get too sick to continue the trip. Home is almost always best, unless you need to be in the hospital.