by Lu Sobredo
How could one with a disability give herself an advantage when traveling? Why not view the word "handicap" to mean as it does in "a race or contest in which certain disadvantages or advantages of weight, distance, time, etc. are placed upon competitors to equalize their chances of winning?"(Dictionary.com. Web. 29 September 2017). Although I don't consider travel a competition, I do at times feel like I am competing with limitations brought on by my chronic illness. But once I transcend the limitations, I feel like a winner. And from experience, I know this takes forethought and preparation.
The prospect of traveling abroad this winter brings on both excitement and consternation. My treating medical specialist is ecstatic beyond belief for me and he has scheduled additional treatment to lessen the level of pain and discomfort in my large joints. Mentally grappling with the discomfort one could encounter in travel is normal. But when one is disabled, the dread is multiplied ten-fold, if not a hundred-fold. This is the thought process of someone with severe Rheumatoid Arthritis (RA) when preparing to travel.
Unfortunately, this routine of assessing how much physical pain will my RA gift me today is part of my daily thought process. This has been especially true during the hottest of summer months this year. I am convinced that the heat of summer and RA just do not mix well. The pain is constant. Some days are better than others. Some joints that were fairly pain free in the past seem to be screaming at me to do something. So the idea of travel is not easy. But with encouragement from my husband James, our son Adrian and my dearest friends, I chose to move on with as much normalcy that I could muster in my new normal life with RA.
|A Long Bus Ride with Family from Madrid to Santiago in Spain. ©James Sobredo 2016|
The following is an excerpt from a previously published essay titled: Travel Abroad with my Son and a Disability. The essay described my health journey from when symptoms of then-unknown medical condition emerged, to being confined in a wheelchair for about 2 years, to eventually being mobile enough to travel to Spain and Portugal three summers after the diagnosis. Many of my friends (and hopefully other readers) have found this portion of the essay most helpful in coming to grips with the idea that travel is possible despite a chronic illness or physical limitation. Full of helpful hints for the disabled traveler, I realized, this is worth sharing. So I am posting this portion of the essay once more as a way of giving ourselves an advantage, a kind of a "handicap" that's positive for us.
…Like most people with disability, my preparation started by confronting what I considered obstacles. Don’t get me wrong, moments of doubt visited me often during the months preceding my scheduled travel. I was very much aware that I would run into unexpected challenges. I vacillated enough times about going, that my husband delayed purchasing my airline ticket. He waited not only for the prices to come down, but also for my assurance that I truly wanted to travel. My decision remained steadfast despite a little voice in the back of my head nagging at me that I should just stay home. After all, doing so meant not subjecting myself to inconveniences encountered by normal travelers who are unencumbered by a serious illness. Inconveniences are multiplied for the disabled like myself. I didn’t succumb to the easy alternative but instead I reimagined practical solutions and antidotes of sorts to make travel abroad achievable. I surmised that if the solutions worked for me, they surely could work for others.
Possible Travel ObstaclesAs a person with RA, I faced several debilitating physical symptoms; complex issues surrounding treatment and medications, and a vulnerability towards feelings of dejection. These were the three areas of challenges I grappled with. They compelled me to explore a set of solutions that works.
What Physical Symptoms?
Symptoms might include decreased mobility or mobility disorders due to inflammation, stiffness and pain in the joints. For me, these symptoms are mainly in my knees, ankles, hands and wrists. When these symptoms persist for any length of time during the day, they not only impede mobility, they also cause my stamina to suddenly drop. There are days when I definitely get brain fog or what feels like brain fog. Some of you might be familiar with the feeling of disorientation and forgetfulness. Luckily this past year, these instances have been less frequent. My health journey has progressed for the better as I have been able to move around without a wheelchair. Starting autumn of 2015, I managed to walk about with only a walking cane. My goal was to be more functional and I welcomed any device that aids movement. I have seen others use elastic knee brace, wrist brace, walkers, crutches, wheelchair and foldable walking cane. Whatever works for you.
My Practical Solutions
1. Select an ambulatory assistive device that fits one’s needs.
2. Call the Airline company a few days before departure to arrange for a wheelchair at the airport and pre-boarding privilege.
3. Travel with a family member or close friend. My husband who made the travel arrangement, also arranged for a companion to travel with me knowing he couldn’t be with me at all times. So my most treasured assistance came from my college-age son Adrian who became my travel companion. He helped me transcend and rise above difficulties encountered during our travel.
What about Treatment and Medications?
These may be as complex as the disease depending on one’s ailment or physical condition. I will consider discussion on alternative treatment options for RA in another blog. Personally, I take medications to reduce the debilitating symptoms and to inhibit further potential damage to the body. At least one medication requires refrigeration. Some of the dreaded scenarios I considered were: What if I lose any of my prescription drugs while in transit? How do I access ice or a refrigeration? How do I ensure I take the prescription on time?
My Practical Solutions
1. Remember to take a hard copy of the doctor’s prescription in the event you lose or misplace your supply. Pharmacies abroad are not hard to find. My RA specialist assured me that in Europe, research for my medical condition is much more robust and treatment more advanced than in most countries including mine.
2. Take a carry-on suitcase in the airplane that can hold an insulated bag with ice packs for medications that must be kept cool. When traveling, I made sure the medications were accessible in my carry-on so I could take them as scheduled. Yes, there are risks to not taking the medications as scheduled. The highest risk is an increased likelihood that the worst of the symptoms could flare up. I also carry up to eight resealable plastic bags of various sizes for ice cubes. I used ice cubes to cool my tired or pained knees or other joints while in the airplane. Flight attendants were helpful in this regard. Just ask nicely. Double up the plastic bag with a barf aka vomit bag as it is designed to lessen leakage, most important once the ice has melted. Most hotels, hostels or albergues have a refrigerator and will freeze the ice pack overnight for no fee. A frozen ice pack while in transit will keep medications cool as required.
3. Keep a daily reminder to take medications on time, and be aware of the difference in time zones. I set my phone calendar and alarm clock to help me stay on track. The adverse consequence, if I didn’t, was enough incentive to stay on schedule.
Why Vulnerability to Feelings of Dejection?
This feeling of dejection could come and go like a nightmare. It is common among people afflicted with a chronic and debilitating disease. The nagging pain and feeling of helplessness are enough to lower stamina. Invariably, a lowered stamina and a compromised immune system are just two of the many potential side effects of the prescription drugs. If I had internalized what the first consulting physician said to me three years before, my life might have been doomed forever. If at any point in my health journey, I had chosen to stay under bedcovers in an unlit room with curtains drawn closed, sleep in or mope about at home, my mental outlook would be totally different today. It is so easy to see only the darkest clouds over the brightness of day with this disease.
My Practical Solutions
1. Expand knowledge about the disease. Recognize that any increased mobility serves as signal that it’s okay to get up and get out of the house, even just to go in your backyard or the other side of the front door. I did so with doctor’s approval.
2. See a Mental Health Specialist as needed.
3. Consume healthy drinks and meals. I was diligent in making fruit and vegetable smoothies about one year before my summer travel abroad. I limited consumption of meat and rich foods. My go-to meals usually included wild fish and organic chicken or turkey, spinach, broccoli and yellow squash.
4. Read travel magazines and blogs with photos to conjure up beautiful locales to visit.
5. Sign up with a gym for chair yoga, aqua aerobics, stationary bike or whatever the doctor may have ordered for physical therapy or activity.
6. Seek out and socialize with closest family and friends. Dine out, listen to jazz or other music of your choice, or attend a rally for social justice with your significant-other. Engage in whatever moves you. I subscribe to all these activities and more. Although each step towards increasing human interaction or taking up an activity or cause might be daunting at first, I gave myself permission to push one day at a time at a pace of my own choosing. Lo and behold, a rhythm to a redefined life routine eventually took form. The possibility for a renewed vigor or a new normal can invariably transform a chronic illness into a manageable one. It takes time, but worth the effort. Take deep cleansing breaths if possible. One never knows, I might just see you at the Prado Museum in Madrid or at an outdoor cafe in Barcelona or Porto.
The two closing paragraphs from the original essay:
…My husband was instrumental in cajoling me to join him in Barcelona, and several awe-inspiring places in Spain and Portugal. I am forever grateful for the travel arrangements, and for recommending our son join and help in my travel. Yes, my diagnosis of RA is a constant companion,
and the discomfort of the symptoms visited me on and off during my travel abroad. It was far from easy, but I remained unfettered. Thank goodness through it all, my son was a constant companion. My husband was not far behind to encourage, push and if necessary chide to get me out of disparaging thoughts. The perceived obstacles were not at all obstacles. They were an inconvenience and became obstacles only if I had let them. Traveling abroad with my son, precious. Asking and receiving help, humbling. Traveling with a disability, my welcomed new normal. And without a doubt, the travel fever in me has been awakened.
|On a Layover in Toronto, Canada Enroute to Madrid, Spain to Meet Up with My Son. ©Lu Sobredo 2016|
Wondering where to wander next? That is part of the fun of a life lived fully. Come off that fence of doubt about travel while disabled. Come join the journey of discovering new places or familiar places abroad with a fresh outlook about traveling with a disability.
Essay ©Lu Sobredo, writer and editor
Reposted September 2017
New Title --Playing the Travel Game with a Handicap--by: Adrian Sobredo
Initially posted October 2016
Guest-Co Editor of the original essay: Ken Miller
ALL RIGHTS RESERVED