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Am How To Live Better With Chronic Disease

How to Live Better with Chronic Disease

Imagine not being able to get out of bed in the morning and not being able to explain why. Having to say “no” to going out for dinner or a weekend outing because you know your body can’t handle it. Being constantly bothered by chronic pain. And on top of all that, juggling the demands of parenthood, whether you’re raising tiny tots or budding teens.

Many of us need not imagine these scenarios – we live them everyday. These are snippets of how it feels to live with a chronic or autoimmune disease. And trust me, balancing those “bad days” with being the best parent you can be is about as challenging as it sounds.

But the good news is, despite what you may have been told in the past, there is more you can do for yourself than you think. More good days are on the horizon, and from one autoimmune mom to another, it is my mission to help guide you there!

Reflecting back on my “bad days”

When a post-viral “autoimmune-like” syndrome first hit me, it hit me hard. I went from being more fit than people half my age and exercising every day, to needing two naps a day. I spent countless hours trying to coordinate my own care between conventional and functional healthcare providers. (Not to mention, I have four children…)

Exhausted and exasperated, I finally reached my breaking point. I could no longer sit on the sidelines and watch as myself, my family, and millions of others struggled with chronic and autoimmune conditions. So I set out to make use of my own expertise as an autoimmune patient advocate and digital health consultant.

This is what I found…

A surprising amount of people are not taking care of themselves. I took to the TEDx stage to spread the message that self care is the most valuable legacy we can pass on, and explain why it may be especially important for those with chronic illness.

Then, a “lightbulb” moment struck – I realized many patients were unaware that there are many ways to take charge of our own health and possibly manage our own symptoms.

That being said, as a chronic disease patient, navigating the healthcare system can feel like fending for yourself in an unfamiliar city. So I set out to create a map, based on my research and experience, to guide other chronically ill patients towards harnessing personal power to live better with disease. This became the basis of my recent eBook, a collection of resources to help you navigate towards your optimal health!

Mapping your way to the “good days”

You can think of finding personal power as becoming CEO of your own health – it begins with developing a clear vision of your goals and steps to achieve them. Since I am a visual learner, I created interactive exercises in the eBook to help with this process.

Grow Your Goals X Feedback Loop

 

After setting your personal goals comes finding the power to achieve them. How do you start? By getting educated, getting experimental, and getting assertive.

Get educated

Scientific research has shown that what we do and eat can affect our gene expression. This is great news for us spoonies and chronically ill patients, because it means there are lifestyle modifications we can implement now to enable our personal best state of health.

For instance, new understanding of the microbiome shows a connection between the gut and immune system – with the right personalized diet, some of us may manipulate ours to possibly prevent or partially alleviate immune-related conditions.

Get experimental

A good place to start on this journey towards personal “best health” is developing your self care toolkit and experimenting with lifestyle modifications to maximize your well being. Your toolkit may look something like this:

 

 

Selfcare Toolkit X

Personally, I got moving! I began experimenting with a variety of movement therapies, from Yoga Therapy to Feldenkrais and Pilates, until I found the most effective combination for my chronic pain. Although these therapies worked best for me, each of us is different. You can read up on more options in my eBook to find your best fit.

Incorporating digital health tools may help you to self-manage and track your progress – I have compiled a “starter-pack” list based on my own consulting, trials, and research. From apps that guide meditation, to personalized diet and fitness trackers, and more, these are easy tools to use throughout the day to document your symptoms and progress.

Get assertive

While self care is hugely important, too many chronic disease patients are left alone to coordinate their care. After struggling to bridge the gap between conventional and alternative medical care for myself, I created a checklist for assembling and managing your care team to make this process easier for other patients. When it comes to your personal health and needs, it is often good to be assertive, and to make use of peer-to-peer support.

So go out there and find your personal power! Challenge yourself to set goals, live as a fearless experimenter, try new things for yourself, and share what you learn with others – after all, we’re in this journey together. You may be pleasantly surprised by the outcome!

Download your guide for maximizing your wellbeing here.

Let us know how it worked for you! Check out our Facebook page! Find your patient community & more resources at Your Autoimmunity Connection.

AutoimmuneMom

About the Author
Dr. Bonnie Feldman’s mission is to create a digitally connected world of personalized care for autoimmune patients. Through consulting, market research, writing and speaking, she works with patients as well as other teams using data and digital tools to reshape research, diagnosis, treatment and prevention of autoimmune disease.

This blog post was originally published by AutoimmuneMom.com, written by Dr. Bonnie Feldman’, and first published on Nov 1, 2017.

This post contains the opinions of the author. Autoimmune Association is not a medical practice and does not provide medical advice, diagnosis, or treatment. It is your responsibility to seek diagnosis, treatment, and advice from qualified providers based on your condition and particular circumstances. Autoimmune Association does not endorse nor recommend any products, practices, treatment methods, tests, physicians, service providers, procedures, clinical trials, opinions or information available on this website. Your use of the website is subject to our Privacy Policy.

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