This blog post summarises the key insights from the latest Virtual Education Session (VES) led by Charmaine Jones, a retired Canadian physician who developed an inflammatory autoimmune arthritis like RA in 2015. After diagnosis Charmaine researched functional medicine which strives to understand the underlying causes of the autoimmune condition and to learn what she might do to help herself along with taking prescribed medications. Charmaine now facilitates Dragon Talks, an online support and education group for people with autoimmune immunity derived from the Dragon Claw Charity.
Dragon Talks has members from Australia, the USA, and Canada and runs on Wednesday mornings at 10 am American Eastern Standard Time. To find out more about Dragon Talks, click here, or click here for more information about Dragon Claw Charity.
This article unpacks Charmaine’s detailed presentation on the pillars of self-care, including why each pillar is important and how to do a self-assessment exercise.
For more free resources, access our in-depth and targeted information brochures here.
The Dragon Claw Pillars of Self-Care
1. Disease Monitoring and Medicine Adherence
This first pillar focuses on creating a monitoring plan that meets your specific needs and goals. This will most likely be developed in conjunction with Healthcare professionals, but self-monitoring is also crucial to ensure you are staying informed about your health, know how to manage symptoms more effectively and ultimately live a better quality of life.
This may include having a suitable team of Health Care clinicians, including an occupational therapist, nurse, and primary physician. Further, setting up a plan for your checkups and your lab tests and imaging studies is key to this pillar. Dragon Claw has a test and monitoring checklist that everyone can use to keep track of their health journey to assist in prioritising this pillar called “Know Your Numbers”. You can access the free Know Your Numbers leaflet here and the Know Your Numbers worksheet here.
Symptom diaries are another great way to self-monitor at home. This diary may include summaries of your appointments and tests so you can watch for trends in your test results.
Beyond monitoring, medication adherence is crucial to our health. This involves working with your professional to develop a treatment plan that you have helped make decisions on and feel comfortable with. This helps in managing symptoms more effectively, preventing complications, and maintaining overall health.
Benefits of this pillar include:
- Early detection of changes and prompt treatment.
- Better disease control and improved communication with healthcare providers.
- Enhanced peace of mind and improved symptom management.
2. Sleep
Everyone’s health is dependent on both length and quality of sleep, but it is especially important when you have a chronic illness. Improving sleep can involve developing healthy sleep habits and sleep hygiene. These include reducing blue light exposure at night time, having consistent times to go to bed and get out of bed, reducing alcohol and caffeine consumption before bed, and improving your sleep environment by making it cooler and darker.
There are many benefits of good sleep, including:
- Improved immune function
- Reduced inflammation
- Better pain management
- Improved mood and cognitive function to think and problem solve
- Lower risk of developing other chronic illnesses
Sleep also has different types, including:
- REM Sleep: Important for memory consolidation and dreaming.
- Deep Sleep: Crucial for physical restoration and immune system function.
Deep sleep duration varies among individuals, but both REM and deep sleep are necessary for overall health. You can try monitoring your sleep with devices like Fitbits or Apple Watches, and make adjustments based on what you observe.
3. Nutrition
Health is closely related to immune health, with nutrition providing the body with the building blocks for its structure. As many of us with Scleroderma may find ourselves with a highly permeable gut, also known as a ‘leaky gut’, nutrition should also be a top health priority, especially as it helps reduce further health complications. Eating whole foods, reducing processed foods, and paying attention to gut health are key.
Work with a health professional to try improving food quality or diversity, and work to create and implement strategies for planning and meal preparation that support food digestion. Focusing on strategies to support your blood sugar or improve your gut microbiome may also be beneficial.
Nutrition testing and monitoring can be done with methods such as stool or microbiome tests.
Benefits of improving nutrient may include:
- Reduced inflammation
- Better immune function
- Improved symptom management
- Reduced risk of nutrient deficiencies
- Improved energy and mood
- Better sleep
4. Movement
Note that this pillar is called ‘movement’ and not ‘exercise’. This is because movement can be different things for different people, encompassing a variety of activities, not just structured exercise. We all have different abilities but the unifying quality is that movement is crucial to our health, no matter what form it is in.
Movement is dependent on your pre-existing health and can fluctuate over time, so keep open communication with a health professional to determine the best movement plan and when changing it may be important. Remember, movement also includes daily activities and gentle exercises.
Along with movement, nature has some incredible health benefits. Even spending 20 minutes observing a tree can be beneficial, because that does involve movement.
Other movement options include walking, running, water sports or aquafit, the gym, yoga, pilates or Tai Chi. No matter what you choose to do, just ensure you move and move everything you can, from your neck and shoulders to your elbows and wrists, to your ankles and toes.
The benefits of any form of movement include:
- Improved range of movement over time
- Increased energy
- Reduced pain and inflammation (as long as you don’t over do it!)
- Mood improvement, with movement being as good for depression as some antidepressants
- Better sleep
5. Mind and Body
This pillar acknowledges the effect our mind has on our body and vice versa, as they’re not separate.
Serotonin is one of the neurotransmitters that’s crucial in our nervous system, especially the brain. However, most serotonin is made in our gut before being transported up to our brain, making another big connection between our gut health and mood.
The mind and body pillar incorporates work and all other pillars, being impacted by our psychological health and our sense of community. This latter point of a sense of community is especially important to consider when managing an autoimmune condition, as a clear sense of purpose and greater connection can impact our health.
Activities that promote relaxation and connection, and reduce stress, are crucial for prioritising our mind and body. Some of these activities can include meditation, deep breathing, yoga or consistent meetings with others, such as our free virtual health sessions!
Further, setting up boundaries and learning to say no to others is just as important to our mental health as connecting with a community, keeping us from overexerting ourselves.
The benefits of prioritising your mind and body may include:
- Reduced stress
- Improved mood
- Better sleep
- Enhanced physical function
Self-Assessment and Action Plan
The second part of this presentation included methods for self-assessments and action plans for the pillars:
1. Self-Assessment:
– Current Activities: Reflect on the activities you’re already doing in each pillar (disease monitoring, nutrition, sleep, movement, mind and body).
– Rating: Rate your current focus on each pillar from 1 to 10.
2. Setting Goals:
– Future Goals: Determine where you would like to improve your focus or activities.
– Gap Analysis: Identify the difference between your current and desired scores for each pillar.
3. Action Planning:
– Actions: Outline specific steps you will take to close the gap between your current and future scores. For example, if you’re integrating new activities like swimming or cooking from scratch, plan how to fit these into your schedule. Consider time management strategies or rearranging your daily routine to make space.
– Support Needed: Identify what support you need to implement these changes (e.g., a workout buddy, nutritional guidance, family support). Identifying roadblocks is also key to knowing what support you need. Try thinking about what might prevent you from following through with your new plans, such as lack of time, transportation issues, or unexpected events. Then, try to find solutions in advance, such as arranging rides, scheduling activities at convenient times, or seeking support from family and friends.
4. Next Steps:
- Review and Adjust: Periodically revisit your self-assessment and action plan to track progress and make necessary adjustments.
- Seek Support: Engage with support groups, healthcare professionals, or educational resources to help you achieve your goals.
Quick Actionable Takeaways:
– Track Your Health: Utilise tools like spreadsheets or apps to monitor and track your health metrics, ensuring you are aware of what needs attention.
– Stay Informed: Always request copies of medical results and letters from your healthcare providers for your records.
– Dietary Adjustments: Consider exploring specialised diets like the Autoimmune Paleo Diet and consult with a functional nutritionist if needed.
– Seek Support: Look for community groups or support networks that can offer advice and practical help, such as transportation options for meetings.
– Self Reflect: find your strengths and weaknesses with each of the five pillars and strive to take small steps to improve your rating of each.
For those living with Scleroderma, staying updated and informed can make a world of difference. Connecting with others can also be hugely beneficial. Find out more about support in your area here.
If you’d like to gain firsthand knowledge, our National Education Sessions and Virtual Education Sessions are available to you at no charge. Our Virtual Education Sessions are held every month through Google Meet. You can sign up for these free Virtual Education Sessions here.
These sessions provide an opportunity to engage with medical professionals and seasoned legal experts who will address common inquiries about Scleroderma and related topics.