The Keys to Self Help
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So you have a significant chronic disease. You’ve rushed around the doctors, paid lots of money and are now taking medication to control the condition. In all, you have spent about four hours face-to-face time with clinicians of various sorts so other than the odd followup visit in a year (say a generous six hours), you still have 364 days to take care of yourself. A lot can happen over a year from flare ups, development of secondary conditions to drug-to-drug interactions and changes to your original condition. Gets a bit complicated doesn’t it?
Despite the best efforts of clinicians and the health systems in different countries, all are designed for acute care. That is, for people who get sick or have an accident then get better with a little help. If, however, you have a chronic disease like rheumatoid arthritis, lupus, diabetes and alike the system struggles with you because your are chronic, that is you are unlikely to get better. The best state of health for many of us with a chronic condition is some kind of stability.
So what do we mean by ‘stability’. Doctors talk about ‘remission’ but I believe this is misleading as most patients think of this phrase as ‘being cured’. Remission is about stabilising with the current treatment. For patients the main game is about living and adapting to the constraints and stringencies imposed by their particular chronic disease. This means understanding your condition and working out tactics on a daily basis to get the most out of life. It is about building and maintaining the quality of life. It is also about paying attention to your body every day. Sure, the medications are essential as are visits to the clinician but this may only provide some 60% of the solution. It is the remaining percentage that will dictate how you adapt and protect the quality of your life. Put another way, the drugs might fix the pain but now I have to live with the condition!
Now we come to the crux of the matter. What do chronic patients require to adapt and enhance the quality of their lives. Sure, paying for help from allied health people is great but there is a lot we can do for ourselves that does not require huge cash investments. Also don’t forget the person who cares for you or your partner. They have to learn about your condition too and help you along the way.
These thoughts led me to start Dragon Claw Charity (www.dragonclaw.net) . It is run by patients for patients and specialises in rheumatoid arthritis and lupus. In many ways Dragon Claw is about that remaining 40% and empowering patients to make good decisions about their treatment and good decisions about enhancing the quality of their life.
The driving force behind Dragon Claw was the recognition that the current healthcare system is not designed to provide ongoing support and advice to the sufferers of these chronic and awful diseases 24 x 7, 365 days a year.
No one understands the daily challenges of such conditions better than those with them. Dragon Claw and its sponsors are focused on this community to ensure we provide advice, support and guidance that supplements the prescribed medicines to:
- Improve the pain management of these chronic diseases;
- Help to avoid any unnecessary hospital admissions;
- Reduce the sense of isolation so many say they experience;
- Provide an effective platform for patient advocacy;
- Improve mental health outcomes through the work of the Dragon Claw community; and
- Assist carers and families to cope with these diseases.
Dragon Claw is a web based service with a range of practical information, tools and support that also promotes membership for those who want to share and engage in the development of their and others wellbeing. The information is conveyed via video, an extensive library of scientific articles, opinions that include well formed and topical subject matter, a regular newsletter and an opportunity for members to engage in conversation via a dedicated forum.
The range of information covers the key topics to help everyone gain a better understanding of the autoimmune diseases, how to mange them better and how to improve the quality of life with them. The practical information and tools covers:
Considered opinions and research on nutrition and what your diet should and should not include;
- Why exercise remains a core element and a challenge for those with chronic pain;
- The role that exercise and rest plays in managing pain;
- How pain works and the positive impact that meditation can have in helping you manage your pain;
- Making sure you help your family and carers understand the impact of your condition and what it means to your relationships; and
- A number of useful tools.
In addition, Dragon Claw is actively involved in the support of the Australian First Nation Community who is 40% more likely to suffer from these diseases and to take our learnings back into the Dragon Claw community.
The term ‘patient’ has an association of passivity. Patients get things done to them. Patients are people who possess many of the capabilities within themselves to manage their own health better. This is where the clinician is more of a coach and where mutual decision making comes to the fore. Think about it - we bear the stress, manage the pain and pay for the service - so we have the key.
Here is a list of what is important to you for improved wellness:
- Focus on your wellness not your illness;
- Want to take control of your condition and your life;
- Communicate to others and communicate some more;
- Look for distractions, pleasurable experiences and avoid depression; and
- Get out and about.
Consider your inside:
- Less meat and increase your fish consumption
- Many more vegetables
- Three whole fruits a day
- Do not eat food cooked in oil p fried or roasted
- Do eat food dressed in olive oil
- Avoid white bread in favour of whole grains
- Consume whole grains at least once a day
- Reduce or eliminate sugar and alcohol
- Meditate to control pain and centre your mental health.
Consider your outside:
- Do spend a little time in full sunshine
- Seek to reduce anxiety by talking to people
- Replace soap and shampoo with non chemical body wash
- Be grateful and focus on what you can do
- Exercise everyday as best you can as this is essential to wellbeing
- Avoid all stressful situations.
- Appreciate what you have and ignore what you have lost.
The continuation of the above has lead Dragon Claw towards a number of useful directions. We aim to make the website video based and the registered member will find around 70 videos dealing with everything from diet to exercise. We also believe that knowledge is power and this has enabled us to development a smart phone application called Maxine. We are looking for partners before we release it. Maxine teaches the user to monitor their own body; reminds then to do certain things and warns if their is a problem. Finally, the exchange from our members indicates that gender plays a significant role as does ethnicity. To this end we have just completed the first stage of a campaign about medication adherence amongst indigenous Australians. These are available on the website to view.
Dragon Claw is just scratching the surface as regards patient centricity, web based innovation and encouraging people with chronic disease to take control. There is so much more we can do but are constrained because of finances. Dragon Claw is supported by 35 volunteers and no-one get paid a salary. Our 15 commercial partners all help too, especially with projects but ‘the Claw’ still lives on a sniff of an oily rag! Please join Dragon Claw or tell your friend about us.Dragon Claw is free and when you register the size of the website doubles.