This trip was supposed to happen last year. We wanted to go to Alaska last summer, but we didn’t. The reason sounds spoiled and selfish when I explain, “Well, we didn’t have quite enough frequent flier points to fly first class, so we waited another year.” I sound like a twit. But I really struggled with being okay with flying six and a half hours without guaranteed food, without a guaranteed bathroom, without space to stretch. I have chronic illnesses and I can only push myself so far before I collapse.
It happened when we went to Puerto Rico two years ago. A four and a half hour flight with barely any food left me feeling sick, so sick in fact that my body cramped and lurched in the hustle of a 90 degree airport and I nearly passed out when we finally stopped and ate. On that same trip, which I do recall happily as one of my favorites, I threw up one meal where I was assured there wasn’t any dairy (but I’m pretty sure there was), and had to turn around on a rain forest hike because I felt like I couldn’t breathe from anxiety and humidity. I spent a lot of afternoons recovering from busy mornings.
Last year, in Wisconsin, I had to take an impromptu walk when my muscles cramped up so painfully I was going to get a migraine. A few times I had to prepare and drink a protein shake in the middle of the night because my blood sugar went too low.
Three years ago in Kentucky I was up in the middle of the night crying because my body hurt so much.
I am packing for Alaska now, and each item I put into a suitcase reminds me that I have to plan for the inevitability that at some point on this trip, my body or my mind will fail me. It is going to happen.
I keep my prescription medications, glucose meter and supplements in my carry-on bag. I cannot afford to lose these items. Also in the carry-on will be a 12-pack of dairy-free protein bars that can act as meal replacements or a quick fix for low blood sugar in an emergency. One of my few precious fluid ounces will be my Flonase.
One of our large suitcases holds winter jackets, gloves and hats. In some parts of Alaska it’ll be in the fifties and rainy, and my body cramps up wildly when the temperature drops too quickly. My ergonomic pillow will also be in that bag, so that I don’t wake up with back spasms each morning.
One bag will contain our guidebooks in which I have researched which restaurants near our hotel will have a diverse enough menu that I have a chance of finding dairy-free food. I have a grocery list and the address of the nearest Anchorage Target ready for when we land so that I can get enough non-perishable snacks to last me on a twelve hour bus tour of Denali and a 6 hour glacier tour out of Seward (lunch will be provided, but of course it all has dairy and if I go too long without eating at all I might pass out).
I bought seasickness bands for all of us because we’ve never been on the open ocean and I can’t handle being sick for 6 hours at a time.
We have backpacks, but I have to make sure I don’t overload mine, or my shoulders will cramp.
I can’t wear flip-flops anywhere where we will have to walk a long time, because my legs will cramp and my feet won’t uncurl.
I need to have ibuprofen available at all times, because even a storm rolling in can push me into severe pain (I have been checking the weather obsessively to try to steel myself).
I will bring make-up because there will be times I get very sick, and I don’t want to look very sick in our vacation pictures forever and ever.
I will bring my notebook with all of our information everywhere we go, because when I feel sick sometimes my brain goes foggy. When that happens I can’t remember simple words, nor can I figure out how to navigate my normal life much less a brand new environment. Knowing my brain is unreliable is scary, and then my anxiety kicks in making it even harder to take care of myself and small children.
All in all it sounds as if traveling is more trouble than it is worth. But if chronic illness has taught me anything it is that anything you want in life is going to take work. An uphill battle just means that the view from the top of the mountain is going to be that much more spectacular once you get there.
Puerto Rico was amazing and tropical.
Wisconsin gave me time when I could just enjoy being with my kids without nagging them about cleaning up toys or doing homework.
Kentucky gave me a chance to see family I love dearly and wouldn’t get to otherwise.
And Alaska? I have never had the chance to see anything like it. I don’t live near mountains, or the ocean, or moose or bears. I might never get the chance to see these things again. I want to see my kids’ faces light up when they touch a glacier, and my husbands eyes widen when he sees an orca. I want to feel the weight of a fishing pole as my son hooks a salmon. I want to smell salt-spray. I want a chance to see Denali.
I want to prove for myself that the trouble, the pain that goes into everyday life, and the pain and trouble of reaching for the extraordinary is always worth it.
2 thoughts on “Traveling While Chronically Ill”
I found your page actually because you have one of my sayings at the top about writing ^_^. Thank you for sharing that by the way. I wanted to leave a comment though because I have lived with a fairly chronic gut issue (past 2 years, almost died from it) that has changed my life considerably and so your post resonated with me with your struggle here. I have been more successful this year with certain strategies in place along with better understanding on the basic physics of wellness. I wish you continued success and I didn’t read through other entries but I would urge you to look into auto-immune paleo and SCD diets along with experimenting with a high-dose probiotic like VSL#3. For every problem that exists there exists a minimum of one solution but often times more than one. Stay aware and move forward with the basics in mind (breath, hydration, movement, low-inflammatory foods, adaptogenic herbs, base supplementation, etc.) Thanks for sharing your story ^_^.
Brandon A. Trean
Thank you so much! I wish I could tell you were I found your quote, but at any rate I thought it lovely! I have a few medical issues-fibromyalgia, hypoglycemia, dairy allergy, early menopause,hypothyroidism and it is nice to hear another person pushing for solutions. Each year I seem to add or find another coping mechanism and much of the time my diet is closer to paleo (with good results in energy and less pain). It’s such a tricky balance to get it all in line. Probiotics do seem to help as well, though certain supplements can make my blood sugar dip too much. I’m glad you could relate, and thank you for sharing your writing in the first place so I could find it!