Traveling with MS

Contact your Doctor  – I would never advise you to travel without medical approval, but you do know your body best.  So take all advice from those other than the doctor with a grain of

  • Contact your Doctor  – I would never advise you to travel without medical approval, but you do know your body best.  So take all advice from those other than the doctor with a grain of salt. People can be helpful and hurtful at the same time.  Friends who are well-meaning may try to keep you from going certain places or want you only to travel in a designated way. Keep in mind that they are not living in your body with your symptoms or your feelings.
  • Make sure you have enough medication.  I failed to order my injections within time for them to arrive before one of my trips. They arrived a day after I traveled, so I was without them for over two weeks. Not a great start to any holiday.  Injectables and other medications are necessary to help keep your condition stable so go to the pharmacy and ask for a vacation exemption if you are going to be traveling for a long period of time.  That way they can fill your prescriptions up to three months in advance. Unfortunately, this is not the case if you need opioid or similar medication.  I wish I had a better answer for this, as I for one have had to suffer for days because of it.
  • Keep a copy of a letter with your diagnosis, and all medications handy in your carry-on bags.  I have had my luggage and even a WHEELCHAIR  lost on a plane…so never ever trust that what you need will get to your destination when you do. Something as vital as your medication should not leave your sight.
  • Find a good way to keep injections refrigerated if that is what yours need. Flight attendants are not allowed to store your injections in the refrigerators of the airplane, so a small ice pack is usually good enough. My injections come with a travel pack. It has a place for the injector as well as extra injections, and a cold pack comes with it.  If you are traveling without refrigeration for so long that you are afraid your injections won’t be fridge temperature, then contact the manufacturer or your MS nurse. They know just how long the injectables can actually go without refrigeration.
  • If you will have traveling companions, please make them aware of the limitations that come with traveling with someone who has a chronic illness.  Even if you have an ‘invisible’ form of MS you are still living with a serious disease. It is important to have your companions know that you may have to stop for rest, or you may have to alter plans because you are not physically able to do as much as they can.  Above all though, before you leave, vow to be your own advocate, know your limits and don’t be afraid to voice them. Since you have warned your fellow travelers that you are not like they are and that you will need to follow your own internal rhythm, then they should be able to understand when you put your foot down and at some point refuse to go on an excursion or outing. Don’t be shy about your needs.  You must let people know how you feel. They cannot see inside your body.
  • And lastly, but so so important, PLEASE do not overexert yourself. People always tell us to ‘pace yourself’ and if you are like me, you probably never listen.  But this time I am begging you to do just that. When you are away from home, eating strange foods, drinking the water, adjusting to different altitudes, you are more susceptible to having little problems show up. On this past trip, I actually had one incident of temporary blindness in one eye. Quite scary, and probably avoidable.  I had been running on a schedule that would challenge anyone in the best of health. Why? Because I am human and out to prove that I can do anything with MS. And the truth is I can, I just don’t have to do it all in a week! So take it from me, this is not the time to show everyone what a superwoman or man you are. If you take it easy and do it in baby steps you will be able to enjoy any vacation without letting your illness take over. I publish my mistakes in hope that you will learn from them without having to experience the same things. So get out there and have a great holiday.  The time to travel is now, not later.

PS – Make a list of important number for people who are responsible for your healthcare – Neurologist, MS Nurse, Primary Care Physician, etc. and it is a good idea to have a Medic Alert Bracelet, especially if you are currently on steroids or Methotrexate.

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