An empowered patient’s approach to living well with dysautonomia.
Dysautonomia is group of serious, complex medical conditions featuring a wide variety of symptoms ranging from mildly annoying to totally debilitating. Some patients may not be severely impacted, while others may be homebound and bedridden. But nearly all of us have had to make some adjustments to our lives in order to cope with chronic illness. I’m here to share a few tips and tricks I’ve acquired on my own journey. I hope you can garner some helpful insight and inspiration from what I’ve learned along the way.
Let the gadgets do the work for you.
Some days, despite our best efforts to feel better, we may still struggle with pain and fatigue. While it can be healthy and positive to push yourself to a certain degree on the good days, some days you simply can’t muster up the strength to vacuum your home or wash the car. And that is perfectly okay. Forgive yourself for it. Instead, ask for help. When help is not available, let devices like robotic vacuums or a trip through the car wash do the trick. We live in the 21st century, so let’s take advantage of all that modern technology has to offer! Since I developed POTS, I have actively sought ways to make my life easier so that I can save whatever energy I do have for the things I love instead of draining my energy exclusively on daily chores. For instance, I use my dishwasher not only to clean my dishes, but also to sanitize my cutting boards, scissors and even my toothbrush. Make your gadgets do double duty!
Cultivate the things you love.
While dysautonomia may change the way you live your life or the pace at which you live it, it need not change the things you love. You may just have to be open to finding new ways to enjoy the things you love. While I can no longer dance ballet, I can still enjoy it but now as a spectator— something I could not do while I was dancing on stage. I can also shamelessly indulge in dance reality television shows and have made new friends who share this interest as well. POTS has forced me to significantly slow the pace at which I live my life, and that is not necessarily a bad thing. It sounds like the ultimate cliché: stop and smell the roses! Chronic illness prompts you to take a step back and re-prioritize what is really important in life and also gives you the ability to find beauty in the ordinary, everyday things. Sometimes it really is the little things that count and the simple things that can make you the happiest!
Make your total health a priority.
While life with dysautonomia can often feel like a series of daunting, endless medical appointments that we are obligated to attend as cooperative patients, it’s important to devote time each and everyday to actively improving your own personal mental and physical health. Whether that means practicing a few minutes of yoga, finding dysautonomia-friendly recipes on Pinterest, or talking on the phone to a friend, these are all ways to take an active role in bettering your health. There is no need to become fanatical about a particular diet, vitamin supplement or strict exercise regime. Even a few minutes of light exercise each day can make a vast improvement in your overall health and wellbeing. Always be sure to ease into any exercise and nutritional changes under the care of your physician.
Being an empowered patient means being an informed patient.
So much new and exciting medical research is happening every year that it can be hard to keep up! Understanding your medical condition can help you cope with it. Visit our medical journal articles page to find key journal articles on different forms of dysautonomia. Staying abreast of current research can help, too. It is mutually beneficial to share the latest research updates with your doctors, who may not have as much time as they would like to devote to researching your condition. If you find the research for them and share it with them, most doctors are happy to oblige and give it a read to see if it may benefit you. Visit the Dysautonomia International Facebook page often and sign up for our email list to find out about the latest research. Check out the research related posts on this blog, too.
Be proactive and get involved.
One really good way to regain some control over your situation is to get involved in efforts to make life with dysautonomia easier for yourself and others by volunteering for Dysautonomia International. It may seem difficult to find the energy to volunteer when you are already dealing with challenging health problems and your daily responsibilities, but if you can find a way to volunteer, I bet you will be glad that you did. Volunteering boosts self-confidence and reminds us that we are still productive members of society even if we aren’t running on all cylinders. It just feels good to know you have helped someone else going through the same thing you have been through. There are several ways you can help: raise awareness, raise funds for research, help counsel newly diagnosed patients, volunteer your talents, etc.
Guest author Kristina Marie graduated from the University of Puget Sound with bachelor’s degrees in both Communication and English. She produced and hosted a government television talk show series called ‘Health Watch’ and is a founding member of Dysautonomia International’s Patient Advisory Board. She became symptomatic her senior year of college and has since made it her mission to become an informed and empowered patient.