Life With RA: What A Day Looks And Feels Like

LIFE WITH RA: WHAT A DAY LOOKS AND FEELS LIKE

Article #4

By Lu Sobredo

In the LIFE WITH RA SERIES for my blog, I share experiences surrounding my diagnosis of Rheumatoid Arthritis (RA) and the many lessons learned living with the disease. I have also lined up stories from others with their own unique medical challenges and personal ways of coping. 

Additionally, it dawned on me that this travel/health blog series and related topics in my blog site Lu Travels Abroad might also appeal to you if retired, planning to retire or embracing the baby boomer years with freedom & resources to travel. If there are topics of interest to you that you want me to look into and cover, feel free to make suggestions through Facebook comment or message section.

Layover in Dallas En Route to Madrid, Spain. ©James Sobredo

This fourth post for the series is about RA with a focus on travel. This series is now a regular feature. The focus could vary from time to time. This, in addition to the travel-themed-articles I publish. 

SOME BACKGROUND

This essay covers: (1) a day in the life with RA, (2) what it’s like to travel with RA, and (3) how important it is to be spontaneous when living with a chronic illness. I dedicate this piece to my the healthcare community who support the fight in managing chronic disability. And a salute is fitting for my disabled warrior sisters and brothers who are passionate about achieving functionality. To rise above the definition of the diagnosis is a common goal among us.

Even though social media gets a bad rap, I thank social media for giving me access to a lot of caring folks from different walks of life. Yes, social media as forum has its negatives: when used in excess, or used to exploit people, the environment, and as we have seen on the news of late in the U.S.—attempt to tamper with a country’s democratic process or to shamefully discredit the genuine suffering and voices of survivors of the Parkland school gun violence in Florida.   

Thanks to social media, I have been given a wider support system. This was critical when first diagnosed. I struggled to negotiate life of RA. Social media helped me stay in touch with family members and friends in many corners of the globe. Social media has also become an artistic outlet of sorts. Writing and publishing online about travel while disabled is both a creative process and a platform for health advocacy. Doing so has fueled my resolve to live with meaning and gusto in my new normal. This new normal is full of fluctuating limitations that makes my head spin at times. But I am grateful just to be alive.

As I grew less dependent on my wheelchair in 2015, about three years later I opted to use a walking cane instead of a four-legged walker prescribed by my primary care doctor. It was a deliberate decision to refuse the walker. I didn’t want to stay highly dependent on an assistive device if I could help it. I realize this might not be practical for some.

Since I’ve become increasingly functional, I’ve learned to navigate the world despite a severe chronic illness. Increased functionality came just in time to lift me up from potentially falling into a dark emotional abyss. My RA doctor was fiercely single-minded to see me walk again, and be functional enough to be self-reliant when by myself at home. The use of a walking cane helped me develop a sense of confidence and some independence. I am cognizant that I won’t be cured of my RA, unless a divine miracle happens. And I still believe it could. However, I stay on the practical side of reality and work with what I have: a gradually improving mobility, ever decreasing pain and manageable stiffness in my joints. 

A DAY IN THE LIFE WITH RA

A day living with RA looks different from day to day. This list is based on a much improved functionality. No longer dependent on a wheelchair (crossing my fingers), or a full-time caregiver who must be ever present to help me out of bed, help take care of my bathroom needs including washing my hair, bathing and dressing. That was my life at the most severe stages four months after diagnosis. RA truly changed my life and my husband’s life as he played caregiver, in addition to his  full time university and civic responsibilities. I surmise, my health condition also affected our college-age son in ways he is not yet ready to talk about. These days, our small family takes a collective sigh for how far I’ve come with this complex disease.

As you read what a full day looks like for one afflicted with RA, bear in mind pain is always present at varying degrees of intensity. Movement takes an effort, but I do my darn-dest to move with grace. This leads to  comments from folks: “you look good,” “you don’t look sick,” or “you look normal.” It’s flattering, but rarely comforting knowing full well the disease is hiding from view. And yet, I smile because I've lived some of the darkest moments brought on by RA.

RA From Morning Til Night

• Upon Waking: I do a quick assessment of how my body feels. What’s the pain level like? The stiffness? Which of my joints are struggling to move today?

• Medication: I take my morning medication and set the alarm clock for evening injection if any is scheduled that day. It’s easy to forget, so an alarm clock is handy. Brain fog is a typical symptom of RA. 

• Cooking: If feeling well enough to fuss around in the kitchen with my hands and wrists, I fix a simple breakfast for my hubby before he heads to work; and for me before heading to the neighborhood gym. I skip this routine if RA has flared up. If I could boil or fry eggs, I could certainly walk to the neighborhood gym when weather permits. Otherwise, some days driving a car is an option. I wear a wrist brace to reduce pain in my hands.

• Physical Exercise: Time at the gym consists of Aqua Aerobics, some days might include time on the stationary bike, and/or chair exercise. One hour of any of these physical movements under the guidance of a qualified coach has been part of my miraculous I-look-almost-normal appearance. (Watch for a separate blog post on RA and Exercise).

Aqua Physical Therapy. ©Lu Sobredo

• Lunch: Afternoon could include a leisurely lunch by myself, a friend or group of friends, or my husband when he’s not at the University.

• Rest: I force myself to take a nap, or just rest amidst pillows in my bed or couch. Fatigue is also a typical symptom of RA.

• Quiet Time: I set aside twenty minutes for quiet time in the afternoon or evening to put ice pack on my joints. In between I devote time to writing for my Blog. The two activities work well together.

• Dinner: Late afternoon or early evening if feeling well enough, I might cook a simple dinner, or prepare left-over to share with hubby when he gets home from work. Some of the time, he picks up dinner items on his way home.

• End of the Day: Evening might include catching up on each other’s day: my routine of living with RA, and my hubby’s day at the University. Some evenings I rest while watching an NBA (National Basket Association) game, watch a show on Netflix or YouTube. Then prepare evening medications if called for before sleep. Most importantly, I say thanks to the Universe and the helpful hands & thoughtful wishes from the day.

TRAVEL WITH RA
From Packing a Suitcase to Meeting Up with Friends

• Packing: Pack as light a suitcase as possible. Pack medications in a separate hand-carry. Find details in this blog post: Life with RA: Pain & Other Challenges When Traveling.  Its original title was Life with RA: Antidotes to Obstacles in Travel.

• Transportation: Get to the Airport with priority check-in. Take a bus, metro or taxi to take you as close to the destination, thus reducing need for lengthy walks.

• Comfortable Attire: Keep as comfortable as possible aboard an airplane or long bus ride. Lightweight clothing layers nicely for when the weather suddenly changes. Shoes must have sole support and well-worn. I wear Keen's from REI per my RA doctor's recommendation.

• Daytime Activities: Venture out to a restaurant, museum or the beach. Take a leisurely stroll on a promenade, beach, anywhere accessible. Preferably a location with scenic views and an access for the disabled.

• Walk Even on Difficult Terrain: Take time for short hikes, conquer the cobblestone roads or inclement weather. Go shopping! 

Walking, Cobblestones and Me. ©James Sobredo

• Relax: Choose a day to stay put at a hotel/sleeping accommodations. Letting an RA-stricken body recuperate after a full day of activities is a must. It makes for a better outing experience the next day.

• Eat In: Eat in with food items purchased from a neighborhood market or restaurant. Besides, it is less expensive to eat in than eat out while abroad.

• Connect or Make Friends: Meet up with friends for coffee and conversation. Better yet, strike up a conversation; connect with strangers. Some could become lifelong friends, a definite benefit of travel. My husband  and I have been blessed to have met some friendly, caring and fascinating people in our travels. Some have become part of our extended family. 

• Be flexible: Listen to the body and limitations. Rest as often as possible. Remember to not be so rigidly on a schedule.

As I mentioned earlier, I have written extensively on what it takes to prepare for travel abroad. I had shared the link above. Yes, it was previously published essay under this title: LIFE WITH RA: ANTIDOTES TO OBSTACLES IN TRAVEL which includes typical activities I had to manage when traveling.

Some disturbing obstacles: finding no elevators in the premises, or the escalators are too steep for my safety, and stairs are too steep for my pained joints. Standing on a long queue at museums and other popular venues are always a huge challenge, but not a deterrence. All throughout my travel experiences, I am with a companion, either my young adult son or my husband who gives me physical assistance. They help keep my spirits uplifted. My biggest travel accomplishment during our winter travel in 2018 in the Basque country on a beautiful sunny day: going shopping and walking to have coffee in old town San Sebastian, then taking a long hike back to the La Concha Beach. All on my own! My ever so reliable cane & improved mobility that morning gave me a sense of bravado to venture all on my own. Granted, my husband was a phone text away.

RA AND BEING SPONTANEOUS
And speaking of "avoiding a rigid schedule," I am remembering one day in Spring when this adage played out well. While home, I had planned to allot time that morning for paperwork affecting my medical insurance and conduct other obligatory review of documents affecting the household. And that quickly changed when I received a text from a long time friend Alan Rhinehart inviting me to coffee. And making time for coffee with a friend is crucial to living a normal life with RA. Besides, I always come away with interesting quips and stories afterwards. And with Alan’s permission, I share this: Sadly he fell on Valentine’s Day while playing golf. He fell flat on his chest, on the left side of his body. Shocked to find himself in such circumstance as his golfing buddies looked on, he remarked in true PG Wodehouse fashion: “He laid there like a gaffed salmon.” For those who may not be familiar with the name, Wodehouse was Sir Pelham Grenville Wodehouse, an English author and one of the most widely-read humorist of the 20th Century. Leave it to my friend Alan to be quoting a Brit.

Spontaneity, when physically able, could be a blessing. So, it’s okay to derail the daily schedule as long as I stay on course with my routine involving medication and physical therapy. Life can be full of opportunities to engage with the living. Being open to possibilities is the breakfast of warriors, RA warriors that is.

RA is a constant in my life. Travel is what I look forward to with a childlike anticipation. Connecting with friends and a network of spiritual warriors, in person or through social media is my creative outlet. What’s yours?

Essay ©Lu Sobredo

ALL RIGHTS RESERVED

SPECIAL ACKNOWLEDGEMENT: This essay is dedicated to Gerald Miller Miller who left this earth for heaven last year, 2017. He loved to travel, but struggled with his own health challenges. While mobile, he stayed engaged with my media postings. We both cheered each other on. I would guess, Gerald, my honorary brother-in-law, is lovingly smiling down from heaven at my Blog posts.

About the Author 
Lu Sobredo is writer/publisher at Lu Travels Abroad, a blog dedicated to folks whose limitations do not hamper them from traveling. About a year into early retirement came the diagnosis of Rheumatoid Arthritis (RA). Her world collapsed from under her as the disability rendered her nearly-immobile and wheelchair-bound for almost three years. Her family's life changed. Her total life changed, but she did not let RA define her. With much will & love from family, friends and an awesome doctor, she regained some functionality--her new normal. She will have RA all her life. And she now writes about life and travel with RA.