When I began to write this post, I was almost a week off meds.  Prescription meds for dysautonomia that is.  Now, I am a couple of years off and finally ready to share this vulnerable post. Like then, I still take a couple handfuls of supplements a day, drink various concoctions, make mindful food choices, stay active daily, and meditate on the regular to support my health.  This is why weaning off medication was even an option.  I'm feeling great these days (of course that term is always relative, isn’t it?) and enjoying so many things that a year ago would have felt like a chore or been nearly unattainable.  I am so excited to be out and about.. Living! Enjoying! Soaring! At the same time, sometimes out and about means on my couch instead of bed or walking a short distance down my street instead of on my couch. I find myself constantly being misunderstood.  When I'm visibly ill, unable to put on makeup or get out of the house, people understand that I'm "sick."  When I feel “well,” they tend to think I'm "better."  I'm regularly questioned or teased about what I eat, "Come on, surely you can have it just this once."  And, I often feel completely left out as others drink the night away while I slowly sip my wine, staying sober to keep my heart rate on point.

What people without an invisible illness don’t understand is that even when I’m at my best my limits are probably much different than theirs. A shower can knock me down for the rest of the day. Playing a quick game of H-O-R-S-E with my son may require a few hours of recovery. A trip to the grocery usually beckons a nap or lounging with my legs up for a few hours after. I usually plan for date night or girls night out by clearing my calendar for the day before and after, so I can be rested and ward off a flare. Honestly, it took me until this year to even begin to consciously realize all the ways I juggle my life to stay “healthy,” to feel “great.” From a strict diet to methodical movement, plenty of rest and meditation, baths instead of showers, compression wear and more, I am constantly managing my body and environment in an effort to stay on my feet, make memories with loved ones, and experience a meaningful life.

See, living vibrantly with a chronic condition (or several) happens as a result of regular intentional choices.  Perhaps one of the most important being attitude. While I do have down days (and plenty of them), I don’t allow my life to be ruled by a “poor me” or “I’m so sick” attitude. I choose to embrace the wholeness and complexity of my life experience. That is, I am going to have “good” and “bad” days just like every other human on this planet and while mine may look different than others, I still experience the spectrum.

When I'm at my healthiest, it's not "over" and I'm not "better."  I wish it were that simple.  These conditions I have are an integral piece of my being.  They are a real part of my every day decision making.  So, while it may look simple from the outside in, let me tell you, it is not.  The simple part is this, I choose to live my life with joy, laughter, ease, love, and peace.  The complex part is how that works out in every day life.  Some days are extremely painful, maybe physically, maybe emotionally, maybe both.  Some days I spend sobbing, others so angry I want to throw things and scream at the top of my lungs.  When the moment is done (or when I've had enough), I come back to what I really want, what I'm committed to.  I ask myself how to get there from where I am.  Sometimes it feels like it takes a really fucking long time to get to where I want to be.  I can do all the self care in the world and still feel like I’m climbing a mountain, carrying the pain of Ehlers Danlos and the weight of dysautonomia to the top, fighting my way into good days between the bad. Other times things seem to move rather quickly. Like when I began this post two years ago. I was in a some sort of growth spurt, riding the wave into greater health. In those times my body seems to respond quickly to the rest, vitamins, diet, movement, and other myriad of daily decisions I make to feel my best, allowing things to click into place with more ease. This is why living with a chronic condition can be so confusing to others and frustrating to those of us going through it. There are no constants. We can feel great one day and the next our bodies could go haywire from the smallest imbalance. So, I guess in some ways, if we accept the unknown, it is fairly simple and much like everyone’s human experience. Nobody’s life is full of constants. For those of us living with a chronic condition, our constants and shake-ups may just come in a different frequency and form than those without one.

That said, we must go on. We must be our full selves. We mustn’t fear judgment and ridicule from others for embracing all of our life, the good, the bad, the ugly, the beautiful. We can’t diminish ourselves in hopes of understanding. Instead, we have to be our full selves in order to spread love and understanding. How will anyone get it if we continue to pretend to be something we are not?

So, my fellow spoonies, live your life to the fullest! Rest when you need to rest. Fly when you want to fly. Eat nourishing foods. Play. Experiment. And NEVER apologize for who you are or the ways in which you take care of yourself. In some ways I am just now becoming more comfortable with this myself. For five years I’ve been living with incredible support and I am just now beginning to recognize that I too have something to offer. It may look different than what I grew up believing a contribution was. However, I am contributing and now that I have begun to acknowledge that I can begin to free myself to live my best life I can truly do just that. It has been a long road and while there is much more to learn I am grateful for where I am today. I appreciate the support I have had to be the healthiest version of myself. I am grateful for the memories I am making, the love I feel, the laughter that graces my lips, the tears that roll down my face, and the freedom to explore living with a chronic condition one day at a time.

If you are fortunate enough to know or love someone with a chronic condition, please recognize that it is an honor. You have much to learn from one another. Be supportive. Listen. Play when she is able. Understand when she is not. Communicate about the delicate balance of your relationship. Ask questions when you need greater understanding. Be present with and compassionate toward one another. We are all still learning.

If you would like to learn more about Ehlers Danlos Syndrome or Dysautonomia you can find information at the links provided.