Travelling with MS - Multiple Sclerosis Message Board

parisiancat · 08-28-2007, 03:42 AM

Hi,

I'm just wondering about other people's long-term travel experiences.

Last year I travelled for three months in Russia and Asia. I had MS at the time (my first 'attack' had been 5 months prior) but didn't know it. In fact, it was my frustration at the problems with my leg while I was away (although I had been living with it at home too) that prompted me to finally see a doctor, which led to my dx.

So, I had intended, when I came home, to go again for 6 months in September. But when I got the dx, I put off my plans to give myself time to adjust. At the beginning of this month, I felt like I might be ready to start planning again and maybe head off in January.

BUT, then I went on holidays for a week. A few days in Berlin with friends and then 4 days in Paris, alone (since I will be travelling alone when I go). And I was very dissappointed in myself and for the first time in months felt like just giving in to this disease.

I wanted to get out and see the city but after less than half an hour my leg gave in and I basically spent 4 days - walk for ten minutes, find a cafe to sit down and rest, walk for another 30 minutes, find another cafe etc. And every evening I was back in my hotel by 5, utterly exhausted. Also, my diet really suffered. I am on a strict vegan, no gluten diet which I just could not follow in Paris, it was too difficult. And I didn't take any of my supplements. I've been back for two weeks, and I'm only now getting back on track and starting to feel good again.

So, I've realised that I'm going to have to re-think the travelling. I can't just pack a bag and head off for 6 months. I need to work out how I'll manage and get into a frame of mind where I can manage. I'm scared to go to more remote places, in case I have a relapse. I'm also afraid of undoing any good I've done with my diet and supplements because it will be impossible to keep up abroad.

I managed pretty well to travel with MS last year. It was frustrating but worth it. Now that I have a name for what's wrong with me, and the potential for relapses and all the possible symptoms, it's much more difficult. Sometimes I wish I was never dx'ed at all.

So after all that, basically I just want to hear everyone's travel stories. What adjustments did you make and how did it work? I will go, I know it'll be one of my big life's regrets if I don't. I just need to figure it out and get used to the fact that it's not going to be exactly as I'd always imagined.

Thanks,
Cat

moore170 · 08-28-2007, 11:45 AM

I know that this sounds drastic but getting a wheelchair was so beneficial for me. I was beginning to want to just stay home because I would get too tired out and couldn't walk well. I felt that I was holding everyone back. If you have a manual wheelchair you can use it as needed. My friends have enjoyed the perks too(no lines, quick check in at airport, great seats at events). This helps me feel like the pain in the a-- of the chair balances out. My travels have not been as extensive as yours but I sure enjoy them more since getting my chair.
Candy

MSNik · 08-28-2007, 01:20 PM

Hi Cat.
The life you live....

Id give anything to have the ability to travel, and by that I dont mean because of the MS- I mean the time, money and LESS RESPONSIBLITIES!

I have done some traveling with MS. Last year was the first time I had to travel out of the country with Rebif syringes. I was scared to death. My doctor advised me to carry a letter of necessity with my passport, explaining why I had to carry syringes on the plane, to give to customs. I did that. I also had him give me a NON DATED script for Solu-Medrol injections for 5 days, in case I did relapse. I didnt need it, but carried it with me. I did one other thing which might put you at ease...I called ahead and found out where English speaking hosptials were. I then called the Emergency Room at the hospital to ask them what would happen if I had a relapse and showed up with my script for the solu-medrol (IV steroids). I couldnt believe it but they didnt give me a hard time at all. THey knew exactly what I was talking about, promised that they stock the drug and that they had MS nurses on the floors who could talk to me. With that, I felt alot better.

Heres the bad part. I spent soo much time worrying about the what ifs, that I didnt enjoy my trip at all. I spent all my days "hydrating" instead of drinking foamy drinks with umbrellas, I was drinking bottled water. Instead of relaxing in the sun, I was in the shade, worrying about overheating...instead of going on excursions, I was worried about being back in my room in time to do my shot....it was horrible. Guess what I learned from this? That things happen. That I had all my bases covered in case something did happen, but NOTHING HAPPENED! Customs never even looked at my travel bag and saw my syringes..thus, I never had to show them my note. I didnt overheat and when I did feel hot, I jumped in the pool or ocean. I didnt need to go to the hospital and probably a couple of drinks would have helped me, instead of me avoiding alcohol...
Next time I go on vacation, Im going all out! Im not going to worry about the what ifs..Ill proabably take the same precautions, because its important to know what to do in the event of necessity but honstly, I will try harder not to worry about the what ifs.
I think you should GO TRAVEL as much as you can. SO you cant take a 4 hour adventure...take 4 one hour ones, instead. So you cant sit out in the heat as long as everyone else...go in the winter or cooler months when you can. Do it. Dont let MS stop you from doing anything you want to do. I think you will regret it down the road. Youre too smart (I know this from your posts) to have regrets..
GO FOR IT!
(and think about taking me with you!)
Nikki

parisiancat · 08-29-2007, 02:46 AM

Candy, thanks. I'm definitely don't need a chair, yet. But I'm starting to come round to the idea of a cane, for travelling. As you said, I might enjoy things more. And even if I don't use it much, it might give me peace of mind.

Thanks Nikki, that's great advice. I'm going to print it off and read it when I'm having doubts and need a boost!

I was determined not to let ms stop me travelling, but my attitude in relation to ms was proving to be a problem. I think the worrying and constantly watching how I felt physically ruined Paris, and made me feel far worse than I probably would have if I hadn't been thinking about it.

And you're right - I should do it now, regardless of ms. I'm never going to get any better than I am now. I should go when I have the chance and relatively good health.

Okay, where's my passport?!

Cat

MSNik · 08-29-2007, 05:45 AM

DO IT! DO IT! DO IT! (and consider taking me with you)!

Cat, where are you living now? And, what took you there? Can I ask? IM just curious where "home' is for you...youve got sooo much to offer us, dont leave us. Make sure you take a laptop on your travels. I want to hear about everything! And, know that youre okay physically, too.

Take some of that advice and call ahead to find out where medical help is available. YOu can probably get additional info on that from the consulate in the country where you are visiting...

Keep us posted!
Nikki