Chronic Migraine: Making an Impossible Vacation Possible
If you have frequent or chronic migraine, you know already that it takes an act of Congress to make a real vacation happen. Without sincere determination, it’s not going to happen. Determination — the real hearty stuff — is tough, so this post is going to be a little bit on the long side, because it's not easy — just possible…
Our family hasn’t had an honest-to-goodness vacation in...ever, actually. Every time we leave it is either for work, a doctor appt, or to visit family. Not that visiting family is a bad thing, it’s just not the total escape from reality we all dream of once in a while.
♪ Picture lush rain forests and angelic music here, lol. ♪
Many will already be thinking, “Well, at least she gets to do something.” I assure you, I fight for every moment I get. What I want to do is to tell you how I do it, so hopefully you can figure out how to make something work for you too. It doesn’t always work, but at least it gives me a fighting chance.
This latest particular vacation was our once-in-a-lifetime 30th anniversary trip. It also happened to be my parents' 50th anniversary, and they very generously took the entire family to Alaska this summer. I could talk for days on the trip itself, and probably, eventually will. What I really want to discuss now is how I make any of my trips happen.
Skagway Alaska Railway Tour
Photo @Ellen Schnakenberg from 2013 vacation cruiseThe Method to the Madness
My trips are planned out well in advance. The days of just "deciding" to go off somewhere camping, or riding, or floating or whatever, are gone. Usually a big deal for us since chronic illness, is getting to go to the next town for something quick to eat so nobody has to clean up dishes afterwards. Maybe dinner at a friend’s house who knows about my triggers. Once a year or two we make it to a movie. Every other year I get to go to a local art show if I’m feeling okay. The simple things in life become those things we treasure the most.
So, back to…
I know most of my triggers. They’re very difficult to avoid, but in the weeks before a trip, I avoid them like the plague. This drives my family bonkers, especially my hubs. My worst triggers are foods and he is, well, a very food-oriented guy. So I go shopping early. Usually that’s his job, but in these cases he’s not very trustworthy. A goof could result in an argument and the need for a heartfelt apology, usually by me.
I go with a written list and a calendar that has the meals for each day written on it so I won’t be tempted to cheat. I buy what I need, then go home. Before a trip, I am obsessive about these triggers and controlling them. I don’t cheat. I even watch the news every day and pre-treat on those days I know are going to be bad weather triggers. I NEVER accidentally miss a dose of meds either, as that can be disaster and days or weeks of recovery.
Meds are planned out early in advance. Trips must be planned around how my insurance allows me to get my prescriptions, my needed injections and IV infusions as well as the physician appointments I don’t always have control over. Again, it’s written down. Without my lists is like being without my brain… or what’s left of it.
Meds aren’t easy. I need to be sure I have enough to last me the entire trip, with a few to spare "just in case." Some need to be kept in a cooler and most need temperature controlled atmospheres without light. Do you know which of your meds need to be kept from light, heat or cold? You might want to check as most have specific parameters that need to be followed for consistent potency vital to migraine management.
Medicine loading is also a method I use to help me make the trip. This means I don’t necessarily take the minimum dosage to get me through. I take the max that my doctor allows. I don't usually take meds that endanger me for medication overuse headache, so this isn't a problem for me. I may even ask for magnesium infusions in the weeks prior to a trip to minimize the chances of an attack. This helps to keep things as under control as possible. I don’t use this technique any other time because it can be helpful short term, but harmful long term and I'm already walking a very fine line. But a once-in-a-lifetime trip is reason to work super hard to make the impossible happen. I'm safe about it because my doctors and I have agreed about the best way for this to happen.
I carry a prescription of steroids with me and a well-worn bottle of opioids. They would be outdated except they’re kept in the freezer so they retain their potency. I also carry an old bottle of Midrin (from said freezer), a couple cans of Coca-Cola, and a box of ginger cookies. A prescription for magnesium IV; a prescription for a Toradol injection; a couple extra shots of B12 along with a bottle of butalbital/Tylenol liquid, and my last ditch effort to rescue myself from Satan’s POW camp is complete. I keep this in a special insulated bag I guard with my life — just ask the airline folks who tried to forcibly take it away from me on my trip to Boston in June!
I have a written "wallet card" that explains my medical conditions and what to do and whom to call in case of an emergency. One of my conditions is rare and often misdiagnosed and mistreated, so this is important. I update this days before we leave to be sure nothing is left off. A copy is in each suitcase, my carry-on and in my coat pocket or hidden inside a lanyard around my neck. Those friends who are brave enough to be my emergency contacts also have copies of my medical information, just to be sure we’re all covered. If in doubt, anybody can feel free to check the bright orange spectacles case on the refrigerator or in the glove box — the ones with the red inked EMERGENCY written on them — for instructions and information.
My doctors know where I will be and for how long. Most agree to be available in case of emergency, and yes, I have used them in the past. We try to have a written plan so everybody’s on the same page in case a problem arises.
Rest is essential. If I don’t rest before a trip, I’m sunk. This means working ahead for my advocacy jobs, as well as packing over a period of a couple days. Packing of course also means things like laundry, which I sucker my hubs into helping with. Without him, I’d be housebound, and he realizes that is the reality of our life now. He also sometimes cooks and cleans so I can get whatever rest I need. Trust me though, this doesn’t come without a price, so I do try hard to be sure and tell him often how extra-special I think he is, so he doesn’t feel like my personal slave every morning when he wakes up.
Even my doggies' lives revolve around my triggers and need for rest. They are so used to my "leaving routine" now; they start sulking before I even get around to getting them ready for my absence.
Sleep. Sleep is NOT rest. Whatever I need to do to maximize my sleep for the two or so weeks before I leave is vital. This may mean hot showers, shooing hubs into the spare bedroom where I can’t hear him snore, valerian capsules, chamomile tea, or even taking an antihistamine which is contraindicated for my Sjogren’s syndrome. At this point, sometimes we have to make choices of which is the lesser of the two evils. Antihistamines mean keeping a big bottle of Biotene next to me along with a spit cup (yes, ewww) and a glass of water for middle of the night wake-ups. Frankly, if I am loading my meds at this point, they are keeping me pretty sleepy anyway, so this isn’t usually a big deal.
Finally, the trip!
Leaving is no easy thing. Our trips are planned to minimize actual traveling time and maximize the ease of the experience. This means sometimes we pay extra fees for specific shorter or direct flights, or flights on specific airlines that go out of their way for chronically ill patients. Sometimes it means driving, or even taking a train, which is probably the least stressful mode of transportation of all. It often means leaving while it’s still quite dark. I even bought new luggage that won’t trigger a migraine for me. Whatever is necessary to make it all happen. Determination is the name of the game here. A girl’s gotta do what a girl’s gotta do. Don’t stand in my way, because I’m not usually in a very good mood after all these complicating changes. They make this trip happen with minimal sickness involved, so I'm rather attached to them. It also usually means arriving at least a day early and going home a day later to allow for migraine time. If I’m lucky, it’s a day or two extra vacation. Usually it just means not running to the bathroom during a meeting.
Wherever I am, I know where the nearest migraine specialist is, as well as a rheumatologist, osteopath, and chiropractor. Most patients aren’t aware that doctors keep lists of others in their field, and you can ask your current doctors for referrals to whom they think will work the best for you, based on your condition and where you are in your treatment. This doesn’t mean you make an appointment during the trip, it means that the doctor has been contacted, knows you’re in the area and that you may need help while there. This is super handy. It’s saved me on multiple occasions. Note: bring the copies of the medical records you've been keeping, just in case.
Wearing clothing that minimizes time through TSA is really helpful, and lately I’ve added T-shirts that mention the migraine blogs I work for, just for emphasis. Funny how a simple migraine shirt eliminates all kinds of questions about your sunglasses, meds bags, or why you need in the bathroom…. NOW.
One last thing that is so vital to take with you: a good attitude.
Bad stuff happens on vacations. Those are the trips you are most likely to remember and laugh about later. The trips that go off without a hitch are easier, but much less an adventure. So, smile your way through lines, even when you want to vomit. Say “Please” and “Thank you” when it’s not deserved. Open doors for others when you can. Instead of getting angry, take a video or photo of a ridiculous situation that is slowing you down. All these things make your trip so much easier because it removes the terrible guilt we all feel when we know we’re the ones causing a problem for someone else, even though we don’t want to. Others don’t need to understand how we feel, we can help them relax with something so simple as a smile.
Live your best life,
© Ellen Schnakenberg, 2013.
Images © Ellen Schnakenberg, 2013. All rights reserved. Last updated August 20, 2013.