Traveling while chronically ill, part I

This may become a series of posts (hence the “part I”), because I can’t imagine that I will be able to post everything that needs to be said about this in one entry. Much as I would prefer to be writing about traveling with chronic illnesses in general, I feel that I need to write about myself and my own experience right now. Perhaps what I go through will be helpful to other readers.

I will be traveling solo to Seattle on Thursday for a family event. (I plan to follow up on this post when I get back, or maybe even before if I can post from my tablet, to let you all know how it goes.) I am really looking forward to it.

At the same time, preparing for it is taking a lot out of me. My anxiety level has been through the roof since last week, although a lot of it is excitement about going to a new place and seeing people I care about. I’ve been having a lot of trouble sleeping, which can really mess with the fibromyalgia.

When one has a chronic illness, even planning for a day trip can become extremely difficult. This is a 6-day trip. There are the “normal” things I have had to do, such as finding a new dress for the occasion, which was mostly fun. (My dress is fabulous, if I do say so myself.) I also got matching accessories and made matching jewelry. I may have gone a bit overboard, but again: fun. I bought a book on Seattle and have been trying to figure out what to do with the few days of spare time I will have there. Also fun.

Then comes the not fun stuff. Least fun of all is the anxiety. I’m sure I should be meditating or doing something to help myself relax, but I am completely wired, and so far I have found that medication is the only thing that helps. Not so good, but at least it’s something.

I have had to make tons of phone calls about special accommodations and arrangements. I have had to get drivers to bring me to the airport and drivers to pick me up at the airport on the other end. Since I need help with my luggage (as in, I can’t even get it out to the curb – or even lift a checked bag from the baggage claim), I’ll need to pay a little extra, since I have to get a car service and not, say, an Uber or a regular taxi. We cannot afford any of this, but I’m pretending we can.

I have also been in touch with the airline I’ll be flying with and the TSA about getting around the airports themselves. Since I cannot roll my carry-on bag, I will need assistance. I have been told that there is no way to get someone to just wheel or carry my bag for me – I need to get wheelchair assistance specifically. It does not matter that I do not need a wheelchair. Wheelchair assistance is the only way to guarantee that someone can help me get my bags to the gate.

This will be weird for me. I am not at all used to riding around in a wheelchair. As a result, it may make me feel like a bit of a phony. I will have to figure out a way to deal with that. I cannot let my pride get in the way of getting any assistance I need. (Also, I’ve been told that you get through security much more quickly when in a wheelchair. I plan to test this theory.)

IMG_3851 (3)
Pictures are fun, so I’m putting in this one of my handicap parking permit with purple butterfly beads to symbolize fibromyalgia awareness.

I have about a billion things I need to put in my carry-on bag. I plan to bring a checked bag as well, but all I can think of to put in it are my casual clothes and less necessary toiletries. The majority of my stuff needs to be with me at all times. In my carry-on, I will have my dressy outfits for the events, prescription medications (a gallon ziplock bag full of small bottles as well as a very small cooler for my prescription eye drops), snacks and sandwiches (because there is no guarantee that I will be able to find anything in the airport or on the airplane that meets my dietary restrictions, and it’s a 6-hour flight), my heating pad, and the toiletries I cannot live without if my checked bag gets lost. This is going to make for a very full carry-on bag. I will also have a smaller tote bag inside my rolling bag, which will contain my Kindle and various other things I will need while on the plane.

I have no idea if this will all fit into my little rolling suitcase. I will probably do a trial run later to find out. I wanted to put a jacket in there as well, since it’s been colder in Seattle than it has been here, but I know I will not have space for that so I’ll have to put it in my checked bag instead.

The family member who is making the food arrangements for this event (as well as lots of other arrangements, I’m sure!) – which includes a dinner, a service, a luncheon, a party with another dinner, and a brunch – has been very patient with me while I bug her about my dietary restrictions to find out if I will have enough to eat. I am really grateful to her for this. I can carry lightweight snacks around with me if absolutely necessary, but I cannot bring a whole meal with me because I will not be at home where I can make myself a sandwich with bread I can actually eat, and because with my neck and shoulder pain it’s already hard to carry anything extra in my handbag. Also, it is incredibly awkward to be at a gathering and have to bring your own food – or eat beforehand – because you can’t eat anything that’s being served. This is because, no matter what I say, other people feel bad for me. I do not want pity. I just want food. LOL!

I have not written much about it here yet, but gastroparesis makes my stomach very particular about what I can put into it without getting sick. Unfortunately, that means my diet is not as simple as gluten-free or soy-free or even low acid. It is very hard to explain to others what I can and cannot eat. This is in part because it doesn’t seem to make much sense a lot of the time. I can eat dairy products, which bother a lot of people with stomach ailments, with no problem. However, for example, I cannot digest raw vegetables. (I will eat most cooked vegetables even though they may set me off, because nutrients and all that.) I cannot eat wheat, but I do not maintain a gluten-free diet. I can digest small amounts of gluten, such as those found in spelt (aka farro or faro, one of the “ancient grains”). I also do not have to worry about cross-contamination because I do not have Celiac Disease. That is my diet in a very small nutshell, and I’m sure I will be posting more about it as time goes on.

Mainly, my point here is that I have a lot to think about that the average healthy person probably does not when they travel. I cannot walk long distances (and some airports are HUGE!), I cannot stand for very long, and I need to keep myself fed. I have to figure out how to keep my anxiety under control while waiting at a crowded, noisy gate. Then there are the things that are completely beyond my control. For example, I may wake up Thursday morning with a fibromyalgia flare or a migraine headache. If that happens, I will have to medicate myself and hope for the best.

All in all, travel is a huge hassle – but well worth it. I just hope things will go as smoothly as possible.

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3 thoughts on “Traveling while chronically ill, part I

  1. definitely go for the wheelchair service. you can’t walk long distances which makes you NOT a phony. wheelchair passengers also go through a special line which is usually shorter than the regular lines, and you’ll get preferential boarding. wear slip-on shoes (can’t stress this enough). anything which takes the stress out of flying is good. 😉 besides, i can’t imagine people seeing your wonderful smiling face and resenting anything about what you’re doing. have a good trip!

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  2. I have to agree with spicey. I had to travel to California by myself and had huge airports where I had to change planes. I used the wheelchair and also at one they had a golf cart for people who needed toget places and it felt great. As you know it is hard for me to walk distances. So don’t feel like a phony and do it!! Have a great time in Seattle too!!!

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  3. Do the wheelchair! You need the service, even though you don’t technically need the wheelchair, so you’re not a phony. A friend of mine recently traveled and did the wheelchair thing because she’d had knee surgery, but didn’t have a brace or anything, just a single crutch. She said it was AMAZING for boarding and security and all that. Totally worth it. This trip sounds great! I hope you figure out the food thing. That’s always a struggle for me because of the celiac, but at least there’s greater understanding about that (you hope, I always get stuck with someone who’s like, “so you can’t eat potatoes/rice/corn?” and I’m like NO! That’s what I CAN eat! Argh!), while it sounds like you have to explain a lot every time as it’s more complicated than just NO GLUTEN. I can eat dairy too and am super grateful, because it tends to become something you can’t tolerate anymore. Yikes. I hope the anxiety wanes (or at least becomes manageable) and you have a wonderful trip! I’ve never been to Seattle, but have heard lots from my sister on how amazing it is. I hope everything comes together, so much to manipulate and finagle with your chronic illness. Lots of layers on top of the hideousness that is air travel today (which is why I don’t fly unless I absolutely have to).

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