Traveling Anxiety, Again

Every time the opportunity comes along to travel, I get excited initially and then in time, an element of anxiety creeps into my psyche. Does this happen to you, too? Living with a chronic medical condition, unfortunately, creates challenges healthy people may not have to cope with. For my husband and me, the issue is that so few know how to help me safely, so traveling makes our lives very vulnerable. Before having my second neck fusion, I experienced several catatonic episodes that were clearly related to the instability of the C-3 joint. These episodes left both my husband and me with serious emotional aftershocks which could probably be diagnosed as PTSD. While these episodes diminished as my health improved, the emotional stress which underlies these traumatic experiences tends to return when contemplating and preparing for extended travel. We both have been left with an emotional vulnerability creating a significant challenge to the experience of leaving the security of leaving home.

Ellen Lenox Smith

It is embarrassing to share this truth, but it is hard to imagine we are the only ones experiencing this. So, I hope the truth helps you to feel somewhat liberated from similar feelings knowing you are not alone. My husband and I do all we can to prepare for all the potential hazards which might threaten our comfort and safety in the hope that the trip will go as smoothly as possible.

I want to share some of what we have learned to do to help relieve some of the anxiety and prepare for a trip:

  • Call the Airlines after the tickets are booked to discuss and prepared to address the medical needs that include a service dog by my side, the need to sit in the front of the airplane due to turbulence in the back creating subluxations with the bones and the need for a wheelchair for each stop. Although I can walk, the distance in the airport is too much for my current position.
  • I call the hotel we are staying at in advance to request a room that is handicap accessible along with it being closer to the elevator instead of having to walkway down the hallway
  • I always pack bed lifters to put under the mattress to elevate the bed due to my low BP. I double two up and put them under the head corners.
  • Due to needing to travel with medication and food I make sure there is a refrigerator and microwave in the room and if not, request one to be included.
  • I always must cope with issues of food being compatible. So to be sure I have something safe to eat, I pack a second suitcase with extra safe food in case I have no luck wherever we try to eat. I have even brought my food to a restaurant and requested to eat it and keep my husband company if I am not able to find something safe on the menu.
  • I had a terrible time once on the way to WI for leg surgery. At the time I was totally wheelchair-bound. Unfortunately, the airlines broke my new manual wheelchair. It took over eight months to resolve the replacement of my chair. So I now rent a wheelchair if we need to get around where we are traveling to. The good news is they companies deliver the wheelchair directly to the hotel, so it is there waiting for us upon arrival and is picked back up by them when we leave.
  • I make sure I am prepared to be safe on the flight by packing my neck collar, earplugs and even nose spray recommended by my ENT to not have more issues develop from the pressure on the flight.
  • I pack my medications and am sure to always carry them with me. I am fortunate to be able to pack them into the pockets of my service dog’s jacket.
  • I am sure to pack and travel with any extremely medical documents just in case there is a need to see a doctor.
  • If we are involved in an evening event and need to be in attendance, I write the people planning it to make sure they understand that I will need to step out by nine at the latest to medicate and have every chance of good night sleep. Staying up late is officially now in our past!
  • If I am at a busy event there are times, I take a break and go back to the room to get off my feet and recharge. I find a simple twenty minutes helps me cope with the remainder of the day.
  • When others at a conference step onto a bus to travel to the Hill to advocate, we instead pay for a cab. That way I don’t have to climb the steps onto the bus and remain safer.
  • To try to remember all of this can get to be a lot so I make a point of making a list to check before leaving the house for things I can’t travel without - my Bi-Pap machine, my neck collar, medications, earplugs, etc.

I hope some of these suggestions might be helpful for others. Traveling can be so enlightening and fun, so the more you can do to help make things go as smoothly as possible can be a huge benefit. Although there are times I have wondered why I again set myself up for a trip that then seems to create some anxiety, I have to admit these trips are fun, educational, relaxing and make us feel a bit like normal people. So working to overcome the anxiety is worth it in the end.

If you have more suggestions, we would all appreciate you adding them in the comment section below this article. There is nothing nice for me than to see us pay it forward and try to help each other.

 May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain- And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website.

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Excellent article. You are lucky to have a companion with you. Traveling alone includes all your thoughts, plus trying to keep an eye on meds, computers, cameram while being patted down because I have metal in my body.

Lisa Hess

Chronic pain reaching head to toe makes traveling so difficult. Though the extent of my physical issues are different than Ellen’s I still needed to be “prepared” for everything; however, sometimes all the prep in the world hiccups when traveling do occur especially, for me, when flying. I was so thankful for the Frequent Flyer miles my husband had accumulated. He would book seats in First Class so I could lie down during the flight but they too ran out. In 2013, out of desperation, I had a spinal cord stimulator implanted just so I could travel from NJ to NC to see my daughter’s school, new home and friends she had made there. I missed out on the college tours, orientation and moving her into her first home (dorm room). She was in college for over 2 1/2 years before my implant. April of that year, I finally made the one hour plane ride to NC and my daughter met me at Baggage Claim to get my suitcase. Unbeknownst to me, I should never have had the implant due to a rare criss-crossed condition called a “U” in my spine that never allowed stimulation to the outside of my legs, only to the inside of my legs. (Yes, the trial did fail, but I was so desperate to see the new life my daughter had, and with the SCS rep calling me every day for 4 months, I was finally convinced to get the implant.) The only way I could walk the large campus was to turn the stimulation to the highest setting to feel it on the outside of my legs allowing. I had the SCS removed in 2015. At the time, it was worth all the pain I suffered with the removal of the SCS, but it did leave my spine in worse condition than before I had the implant.