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Eileen Davidson – from Rheumatoid Arthritis discovery to advocacy
By Pauline McKenzie

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Eileen Davidson once worked full-time as an esthetician, but at the age of 29, the debilitating pain caused by Rheumatoid Arthritis (RA) compelled her to cease working. Today, RA significantly impacts Eileen’s daily life. Eight years have passed and chronic pain and fatigue continue to be the most challenging aspects of her life, accompanied by some cognitive dysfunction which is part of this condition. These symptoms affect her entire body, with daily variations. “It is a full body disease which is easy to trigger,” she shared, “some days are good, some are bad and some are in the middle, but I really need to watch what I do every day to make sure I don’t overtire myself or aggravate my joints.”

To manage her RA, exercise and medications are critical. Exercise plays a crucial role in maintaining the mobility of her body, while medication to deal with chronic inflammation during joint flare-ups is very essential. Although diet cannot cure RA, it can enhance overall health. Eileen pays careful attention to her diet to maintain a healthy lifestyle which contributes to her overall well-being. Pacing herself and taking regular breaks as she goes about her daily tasks are vital strategies she employs to prevent strain.

Advocacy

Eileen actively engages in advocacy work related to RA, collaborating with organizations such as the Arthritis Society and Arthritis Research Canada. She reflects on her journey, stating, “I started to blog about my experiences with rheumatoid arthritis in 2017 and also volunteered with some organizations, first with the Arthritis Society and then I became one of their ambassadors,” she said. “I now work on campaigns, fundraising initiatives and steering committees. I’ve done lemonade scans and bake sales, bottle drives and other fun things to raise awareness.” Eileen also plays a vital role as a patient partner with Arthritis Research Canada, where she serves on their advisory committee, actively contributes to arthritis research, and participates in studies.  In addition to her significant contributions to the arthritis cause, Eileen is a respected writer for an organization based in New York called Creaky Joints, and other publications. Her blog and social media channels have earned recognition as some of the most impactful platforms for raising awareness and sharing valuable insights within the arthritis community.

Medical advancements in RA treatment over the years, including biologic medications, have led to fewer cases of wheelchair use, joint deformities, surgeries, and heart issues associated with RA. However, Eileen emphasizes the ongoing need for raising awareness about the complexities of RA beyond just joint pain.

Travel strategies

Travelling with RA poses challenges for Eileen. To minimize discomfort, she prefers travelling during off-peak hours to avoid crowded public transportation, as close contact with others can be painful. At times, she sometimes opts for Uber. She prioritizes her well-being and strives to avoid stressful situations when possible. Additionally, she plans shopping trips during less busy times, typically on weekdays.

When travelling internationally, Eileen has learned to make specific adjustments to manage her RA effectively and minimize discomfort. An essential piece of advice she offers is to pack lightly and carefully consider the necessity of items brought on the trip. “I have strained my joints and hurt myself by carrying too much,” she said, “so now, when packing, I ask myself—do I really need this?” Eileen prioritizes comfortable and supportive shoes, opts for easy-to-maintain hairstyles, and ensures sufficient time gaps between activities, especially when participating in conferences. While flying, she opts for window seats to enjoy additional leg space.

Prescribed muscle relaxers or other medications to aid sleep and muscle relaxation are essential. She also travels with a neck pillow, light blanket and a foot hammock to enhance her comfort during journeys. Staying hydrated is crucial, and Eileen ensures she always has water with her.

When exploring new places that involve a lot of walking, Eileen comfortable footwear is a must-have. She selects wide-width shoes with arch support and shock prevention features. To reduce shoulder strain, Eileen favors a fanny or backpack over a heavy purse. Google Maps helps her gauge distances to destinations, and if a location appears too far, she may reconsider or seek alternative transportation.

To adapt to varying weather conditions, Eileen often travels during off-peak seasons to avoid extreme weather. Locally, she takes precautions during icy conditions, such as salting and shoveling pathways to prevent falls that could exacerbate her RA symptoms. A past fall resulted in significant trauma and necessitated medication changes, underscoring the importance of safety during challenging weather conditions.

Important too is food and beverages when travelling. Even when she’s away from home, Eileen must maintain healthy diet. While she may occasionally indulge in sweet treats, moderation is her guiding principle. It’s often difficult not to try new foods but she makes an effort to stick to healthier options such as avoiding beverages that may lead to fatigue or bloating. Her focus is on making mindful choices and maintaining a balanced diet, even when sampling new foods while travelling.

Physical exercise

As a vocal advocate, Eileen attends conferences in various cities throughout the year and takes steps to ensure she is physically fit for each journey. She incorporates a blend of cardio and strength training routines to improve her endurance, balance, and overall physical health. Given the fluctuating nature of her RA symptoms, she customizes her workout routine, recognizing the importance of paying close attention to her body to prevent overexertion during tougher days.

Medication

Her prescriptions are filled in advance and she keeps about one extra week’s worth of medication in her carry-on luggage. This guarantees access to all the necessary medications whenever she needs it while she is away from home. Additionally, she keeps an emergency supply of prednisone, an anti-inflammatory medication prescribed by her rheumatologist for severe flare-ups during travel. She is mindful, however, that this medication is not for regular use due to potential side effects like bone thinning, weight gain, and an increased risk of osteoporosis.

Stress reduction

This is a vital aspect of Eileen’s travel routine. The most challenging travel experiences for Eileen often involve tight schedules, long lines, delays, or cancellations. These situations can disrupt her carefully managed routine and lead to discomfort, especially when she is carrying heavy luggage. Scheduling extra time from a trip’s start to finish is her safeguard.

Upon returning home, Eileen maintains a minimal work schedule for about a week to ease back into her daily routines.

Mental Health

An essential aspect to note is that RA is not solely about physical pain; it can also significantly affect mental health. Many individuals with RA, including Eileen, experience heightened levels of depression and anxiety, which can be challenging to manage alongside the physical symptoms. Travelling with RA sometimes involves overcoming anxiety and mental health-related challenges, underscoring the importance of prioritizing mental well-being. But Eileen said, “it’s not just travel that causes anxiety and depression. So many things are difficult for us because of our physical limitations. Sometimes we fear our disease—for instance, at times, I find myself being a little bit of an agoraphobic because I don’t want to go out and experience anything. This is one of the main reasons why a lot of people don’t travel because they fear what might happen if they do venture out.” But she shares this piece of advice, “listen to other people about how they do it, then just develop your own routine.”

On the positive side, Eileen derives immense excitement from travelling. The anticipation of exploring new locations, interacting with people from diverse cultures and indulging in unique foods invigorates her, but travelling for advocacy adds a sense of purpose to her journeys.

Managing RA during travel demands meticulous planning, employment of stress reduction techniques, being acutely self-aware and having travel insurance for reassurance.  But regardless of anxiety, pain and fatigue, Eileen stated, “I love travel.”

https://chroniceileen.com/

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