Planning the Epic Journey: The Challenges

A lot of people would like to travel. Not everyone, sometimes I meet people who say “it’s great that you love to do this stuff, but it’s not for me”, but a lot of people. And usually they’re accompanied by a list of reasons why not to travel.

Money and safety are ironically the excuses I hear most. Ironically because they must be, in my opinion, the least founded excuses ever. Depending on where you go, you can travel for quite cheap and if you’re trying hard enough, you can cover a good portion of your travel expenses while on the road. Safety is… I dunno, I kind of get the impression that safety is a lie our countries tell us to keep us from spending money abroad. You hear so very little of the millions of women (in “safe countries”) who are abused (and even killed!) by their husbands IN THEIR OWN HOME, yet one tourist is killed in Turkey and suddenly travel is dangerous sport.

But I have my excuses as well. I prefer to think of them as “challenges” and spend a lot of time figuring out how to get around them.

1- Time

This is a reoccurring theme in my writing… I’m obsessed with time. Youth is short, so so so short. Yet somehow, to fit in with society, by the end of one’s youth, one must have:

- an education
– a career
– world traveling experience
– a spouse
– children or an official no-children stance

And as hurried as I’ve been, with time running out, all I accomplished was the education. The hell. How do people do this stuff?

Now I’m working on the career part and the world traveling part, but it’s very hard to fit them in together. You get 2-3 weeks vacation a year, extra time off is hard to negotiate, and at most you can take 10 (14 if you’re lucky) days off in a row. It’s great for the bank account, but you can’t really see the world in that time-frame.

Frustrating.

The joy of contract work is that when you’re done, you’re done. There’s no dramatic quitting or anything like that. Of course you’re leaving: your contract is up. But still, I can go at most for 2 years without working, otherwise I have to redo all my licensing exams (that was traumatic enough the first time – would rather not go through that again), and besides, even with just one year away, I’d forget a lot of important stuff and miss a lot of big changes. So I come back after a year to another contract, and by the time that’s up, it’ll be time to tackle children so that I don’t have to spend my quality retirement years chasing after a toddler.

2- Attachments

About a year ago I was dating this guy and one day, out of the blue, he asked me to choose between the trip and the relationship. (He didn’t actually word it like that, but ultimately that’s what he was asking.)

I was a little bit ticked off because THE WHOLE REASON I agreed to date him in the first place was because he said he was planning to go to Australia too, but that’s beyond the point. The point is, that scene was a physical manifestation of the internal conflict I get whenever I meet someone who doesn’t totally turn me off.

In a long time, I’m leaving for a long time.

It’s not super super hard because I’m not attracted to people very often and the rare people I am attracted to generally aren’t attracted to me. For this, the love lottery plays into my favor. But when the unlikely situation occurs I really connect with someone, the warning flashes through my mind “Remember, you have just the right amount of time to get attached.”

It’s not just about my own heartbreak. I’ve handled that a dozen times before and I can handle it again. Adventures are a great distraction. I just hate to waste someone else’s time and upset their feelings.

Sometimes, well-willing people tell me that I should just have shallow relationships and fool around. Been there, seen it, done it. Outgrown it. I’m super happy on my own and have absolutely nothing to gain from a casual boyfriend. I don’t feel like I have anything to gain from a serious relationship either, but you don’t always choose those things, and every now again, I meet someone who catches my interest and I worry that they’ll distract me from leaving.

Perhaps it’s silly – I think that in order to put up with me, a partner would have to share my lifestyle (or be really really independent) anyway, and I’d be ok with someone willing to join me on one or more legs of my trip. Still, on the rare occasions that seem to have potential, the question always comes up: “This or the trip?

3- Health

I’ve had MS for about 13 years now. Most of the time, I do really well. I was so young when I was diagnosed that I have no idea what my body would be like without MS. I get sleepy a lot. Maybe I’m just a sleepy person. My legs get tingly a lot. Maybe I have oversensitive nerves. I’m terribly absent minded. Maybe I was born that way. I have trouble talking. Maybe I’m just too nervous around people.

I get super angry during bad flareups (do you know how much it sucks to have to put EFFORT into getting to all the way to the bathroom, only to realize that…those…muscles….don’t work anymore?), but for the most part I’ve accepted my fate and even have plenty of ideas on hobbies for my wheelchair-bound days. I’ve always wanted to take singing lessons. And I do have lots of ideas for books I could write.

But one thing that worries me all the time is that I won’t get the chance to see the world the easy way before my immune system eats up too much of my nervous system. I had an MRI last week. It showed some degeneration. Not a whole lot and, thankfully, my spine (which causes like 80% of my problems) was actually pretty stable. It’s still a reminder that my time is limited.

Obviously, I could get hit by a car tomorrow and become quadriplegic long before the MS sets it. I work in healthcare. I know people who’ve been quadriplegic since they were teenagers. You never know. You just never know.

Anyway, the biggest challenge isn’t all the emotional crap I’ve been wasting your time with. The biggest challenge is this:

Betaseron 004

This is one month’s worth of meds. 2000$ worth of temperature sensitive injections. WITH NEEDLES.

In case you don’t really grasp the, um, size of the problem, here’s a picture of ONE MONTH of meds in comparison to my hiking boot:

Betaseron 005

Now imagine fitting 12 OR MORE of these into your tiny backpack and dragging it (and them) across deserts and jungles.

Right.

There are a few other MS drugs but they either require refrigeration (like that’s going to happen in the jungle) or aren’t covered by my insurance. I did test to see how much a year’s worth of Gilenya (the pill for MS) would be. 36000$. (Yes those are 3 zeros.) Um, yeah. I’ll take the wheelchair.

I talked with Beyer (who makes the meds I take) a few times and there is no travel format available for Betaseron. I could repackage the meds myself (after all, I am a pharmacist and have access to labeling and packaging materials), but a year’s supply would still take up a lot of room of my bags, and there’s no guarantee that border officials will accept pharmacy packaging for injectable drugs. And at 150$ per dose, I’d rather not have my meds confiscated.

I looked around online (I’m not in touch with the MS community. Too depressing.) and found absolutely nothing on long term adventure travel with MS meds. People with MS apparently don’t travel. I did read a blog post about one guy who had MS for years and was excited about a trip with his family to the Grand Canyon (I was very happy for him), but there’s no useful information out there.

My neurologist doesn’t recommend me stopping my meds, but I think the plan will probably be to have a few months supply, since my Australia leg will probably be fairly stationary, and go without for the heavy backpacking part.

It’s kind of sad to say, but I’d rather risking loosing my ability to walk sooner than pass up the opportunity of a lifetime because of med issues.

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6 Responses to Planning the Epic Journey: The Challenges

  1. Nazaniel says:

    Huh, the meds are a real issue. I don’t even know how you’d go about temperature controlling them while travelling – maybe the diabetes community would be a better place to look for ideas than the MS community though? I think some types of insulin have to be refrigerated, and it seems like it’s less of a big-deal-disease than MS in terms of the effect on your life (I wouldn’t know, I’m just guessing). You may already have thought of this, being a pharmacist, but just an idea!

    It sounds like you’ve had real problems finding someone who shares your love of travel :( They do exist! Don’t give up hope if it’s what you want! :)

    • Ophelie says:

      When it comes to travel, diabetics get it pretty easy. Their stuff comes pre-packaged in tiny, easy-to-carry formats. They can also easily buy insulin, needles, lancets and strips in any pharmacy, in most places in the world. MS meds, not so much. They’re far more expensive and come packaged in huge boxes. What I could do (to mimic diabetic supplies) would be to open each dose box, put all the needles together (or just toss the needles and buy diabetic needle tips as I go), put all the vials together and put all the syringes together and label each little package.

      It would still take up room, but much, much less. The downside of that, it that I have no idea how border officials will react. When it comes to injectables, they tend to like everything in their original packaging.

      As for meeting someone who shares my love of travel. Yes. Whenever I meet couples who travel together, I wonder how they did it. I’ve never met a man who genuinely likes to travel. (Other than maybe a few during trips, but no one I’ve really connected with.)

  2. Nazaniel says:

    Another random thought – I’ve used poste restante before when I needed things at certain parts of my trip but didn’t want to carry them the whole way. I wonder if there is some sort of refrigerated poste restante you could use – or even a CYO version where you could refrigerated mail your medication to someone in advance to refrigerated-hold for you until you arrive. That should be easy to organise in Australia at least! (I don’t know the legalities, just throwing out ideas)

    • Ophelie says:

      My meds actually don’t need to be refrigerated – that’s why I didn’t switch to an easier to carry format. Other than the pills (which aren’t covered by my insurance), all the other MS drugs need to be refrigerated. Betaseron is temperature sensitive, but I think as long as I don’t leave it outside for hours, I should be ok.

      My neurologist brought up posting meds as well, but I’m not sure where I’m going to be and when, and I don’t know anyone well enough in those countries to mail meds to them. I’m also not too sure how I feel about sending thousands of dollars worth of meds overseas, though I suppose that’s why mailing services offer insurance!

  3. Nazaniel says:

    Oh, sorry, I misread the bit about refrigeration :)

    If it doesn’t need refrigeration, you could just use the regular poste restante anywhere :) If you figure out how long it takes parcels to get there (it’s about 10 business days from Toronto to Australia CBDs), you can just get a family member to mail your prescriptions to you as you figure out where you’re going :)

    Otherwise, if you want contacts in Australia, I can put you in touch with reliable people (family and friends and family of friends, 30+ professionals with jobs and kids) on most of the east coast who could help you out with a mailing address and to meet up to hand over the medication. Brisbane, Sunshine Coast, Cairns, Sydney, Melbourne, Bendigo – depends where you’re going. I may also be able to organize a person in Ha Noi in Vietnam too if you’re going there. I know it’s hard to trust internet strangers, but I know you’ve met up with internet strangers before :) It’s up to you – I think it’s awesome that you’re not letting MS stop you from doing what you want, so I’m happy to help out if I can.

    Also, if size is the only issue, you could just get smaller rolling suitcase for the medication. Most people I’ve seen recently in hostels etc aren’t using backpacks anymore anyway, so it’s not like you’ll stand out.

    • Ophelie says:

      Thanks for the offer!

      I’ll check with the local post office and see what they have to say about poste restante and whether it’s safe to ship injectable meds through the mail. Being able to use the mail would make everything so much easier, but I’m not sure what the policy is for it. When I was in the US for school for a few months, I was advised against mailing my meds and ended up dragging them all with me on the plane.

      I’ve considered bringing my meds in a suitcase as well. A smallish carry-on size suitcase fits 3-4 months, so I was considering doing that for the Australia leg of the trip since traveling with baggage should be less of an issue. In Asia, though, with their small, crowded buses and high theft rates, it might be more problematic. Ah well, I’ll figure something out!

      I’ll let you know if I need some contacts in Australia or Ha Noi! Thank you again for all your input and help!

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