Travel with a purpose

If you could travel anywhere in the world, where would you go and why?
Maybe you’ve already traveled to an exciting place and want to go back.
We know travelling with a chronic illness can be challenging,
so any tips for others that you can share would be great!

Checking one off the bucket list

As I mentioned yesterday, I am planning a road trip with friends to Washington, DC this summer. Seeing the capital city has been on my “bucket list” list for a long time, so I’d like to make the most of it. Fortunately, my traveling companion wants to sight-see, too.

Preparing for the worst

OLYMPUS DIGITAL CAMERAI’ve traveled a few times in the past 10 years, so I think I have an idea on how I need to prepare. Frequent traveling to festivals and shows with my husband trained me to prepare for the worst. Dealing with a migraine attack at an outdoor festival with 100° weather and 40% humidity is a big motivator. Plus, riding in the truck for 6 hours with a pounding head can make you absolutely miserable.

I had to get creative in order to be more comfortable. Normally “packing light” is a virtue. In the case of chronic illness, holding back can put me at risk. I learned to always have something hot, something cold, something cushioned, something distracting, and so much more. In the video below, I demonstrate the use of my extensive toolkit.

It’s different now

Botox has cut out almost all Migraine and Cluster attacks. Based on current headache activity, I can expect 1-2 Migraine attacks during the trip. However, summer has typically been the worst season for Cluster Headache activity. Those attacks often trigger Migraine attacks, too. I could feel great all week. I might also have some nasty attacks that make me very sick. Then there’s the reality of Fibromyalgia which could flare at any time.

2015 conference logoA lot of people in my situation wouldn’t even think about traveling halfway across the country. I will do my best to prepare for anything and then relax. I can’t let my health stop me. I have to do this. It’s a vacation with a purpose.

Sunday, June 21st is the AHMA Patient Conference. For the first time ever, I will get to meet all my virtual pain pals. These men and women have been instrumental in my transformation from helpless victim to patient advocate. They have become some of my best friends. Sure, we’ve had phone calls that lasted for hours. It’s just not the same. I owe a lot of people some very big hugs.

Here’s a preliminary packing list:

  • Enough medicine to last the entire trip, plus a few days extra in case I am delayed
  • CPAP and mask with distilled water to prevent early morning attacks. Plus, it will help my roommates get some sleep.
  • E tank of oxygen and mask to stop any Cluster attacks that might surprise me
  • TENS unit with extra pads and charger.
  • An ice bag to fill up with ice cubes
  • Single-use ice packs for the road
  • Lightweight dish towel to insulate the ice packs
  • ThermaCare wraps for back and neck
  • Repeat the Heat packs for shoulder, back, and head
  • Scarf to wrap heat packs or ice packs to my head.
  • Portable power inverter provides electricity on the road
  • Electric spa wrap
  • Cervical pillow
  • Silicone ear plugs
  • An eye mask
  • Miscellaneous comfort items: lip balm, eye drops, lozenges, etc.
  • An extra-large cup with a lid and straw will cut down on the trash.
  • Portable personal fans
  • Emesis bags are essential because vomiting is always a possibility for a migraineur.
  • Plastic bags to collect trash throughout the trip.
  • Cell phone and charger
  • Laptop with power cord
  • Small cooler with ice for ice packs and medicine that requires refrigeration
  • Layers: I pack clothing so I can dress in layers, including a favorite sweater or zippered hoodie

Here’s video that demonstrates many of the items that will be in my suitcase.

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