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My Anxiety About Traveling With Debilitating Chronic Pain


I’m going to be completely honest: I’m terrified to go on vacation next month.

What started as an invitation to a family reunion and a trip with my husband that would last only four days ended with an 11-day stay thanks to a mixup in flights and now an overwhelming anxiety of how I will manage the extra time. This is the first time I would be returning “home” since moving to Arizona four years ago, and my first vacation since before my health took a giant nosedive mid-2017.

Partly, my fear of going away for that long stems from the fact that the flare that ended my dream job and kept me bedridden for three months came on the heels of my last vacation. Another part is essentially being without my husband, my caretaker, the second half of my trip. The worst part is the uncertainty of my condition.

I’ve been experiencing debilitating nerve and muscle pain, along with numbness, the last few months. It now requires me to use a mobility aid for long distances and has essentially turned my brain to mush. I’m waiting as I type for a neurology appointment to delve into these issues, and it adds a whole other level of anxiety to my trip. I don’t know how to treat any of this. My pain is barely managed by the tools at my disposal and the numbness is scary, to say the least.

I’ve been watching countless YouTube videos on what I should prepare for as a spoonie when traveling, what my essentials should be, how to cope with pain, but the fact of the matter is, I am terrified and no video tells you how to stop being scared.

I’ve given myself a few points to repeat when I feel like I should back out:

1. I know going back “home” means I will have friends and family that will have my back if things go horribly wrong or if I need extra assistance.

2. I’m in a familiar place, and it eases a lot of the anxiety knowing my surroundings by heart.

3. I have wanted to do this for months, and backing out means I would miss out on all the people and things I want to see.

I know my fear won’t dissipate until the plane arrives “home” that first day. Until I’ve seen Lake Michigan and spent the afternoon in my favorite tea shop drinking the tea my husband and I shared our first date, the anxiety will be there.

It’s something I have to live with! I know this, and I’ve come to terms with the fact that it’s the unfortunate way my mind works when I have a lot of uncertainty around me. Anxiety has been my companion longer than chronic pain or my autoimmune disease, and I know exactly how to travel with it. I know how to roll it up so it takes minimal space in my suitcase. I just hope that my pain and illness roll up and take as little space as possible, too.

I know at the end, I will enjoy my trip, bad pain days and all. But until then, I have to deal with my travel anxiety and find ways to silence it while I wait.

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