In tomorrow's post, I’m excited to share one of many lifestyle hacks I discovered through twelve years of battling Dysautonomia and learning to live well with an incurable (currently) chronic illness.
It will come as no surprise to Dysautonomia readers that the first dilemma I will address is the grocery store. Everyone who has Dysautonomia knows exactly why this is an issue. But for awareness purposes, allow me to explain.
Your (healthy) autonomic nervous system enables your body to stand upright whenever you please, expertly fine tuning blood pressure, heart rate, adrenaline, circulation, and a host of other functions that allow you to accomplish the basic tasks of your day.
Imagine if your body did not automatically make these adjustments or overcompensated causing your heart rate to spike and blood pressure to drop every time you stood upright. Simple tasks like shopping are no longer simple. They are mountains to be climbed and debilitating symptoms to be stoically ignored.
However, this is merely one of our many mountains to climb on a weekly basis, and we can push through our autonomic dysfunction for only so many hours before we crash. And if we do push to a crashing point, our recovery (time literally spent lying down) lasts even longer.
Think of it as a checking account. There’s only so much cash available, and if you overdraw, there’s a fee.
I use positive terms as often as possible, but in this case, there’s no avoiding that we “pay” for everything we do, no matter how basic. Yes, there’s an entire world of beautiful positivity to be found within this difficult reality, but to arrive in the land of sunshine and rainbows you must first acknowledge that this new reality does in fact suck and likely, you will need to take a little voyage to the island of grief.
I refuse to invalidate your experience by skipping over the heartbreak for the sake of positivity.
Hope is not turning a blind eye to a difficult reality. Rather, hope is recognition of the incredible ability our souls possess to adapt and grow within difficult circumstances.
Healthy friends, imagine if you could only perform the necessities of your life. No social time. No dinners out. No leisurely walks on the weekend. And if you did choose to engage in one of these “fulfilling” activities, it means you give up something necessary like grocery shopping, exercising, or washing your hair. Imagine living in this manner for a lifetime.
How would you feel about these choices? Washing your hair or cleaning your house? Buying the groceries or cooking dinner? Cooking dinner or washing the dishes? Walking the dogs or exercising? These are just a few examples.
In addition, Dysautonomia patients never get a vacation from thinking this way. There are no days off. Even if patients handle this crazy making level of prioritizing well, they are bound to suffer emotionally at some point.
For me, the breaking point was 2011- I was 21. The anxiety hit fast and hard. Imagine prioritizing is managed by a muscle. And like any other muscle, it needs rest in between use to recover and grow stronger. My prioritizing “muscle” became fatigued and eventually froze. My brain could no longer process that I must choose between washing my hair or leaving the house. Instead, I froze with anxiety, paralyzed at the thought of making another decision about something I should be taking for granted.
I cried over my loss of self expression. I recognized that much necessary self expression is perceived and experienced through our daily choices in how we spend our time.
After recognizing the symptoms of anxiety, I scheduled counseling. I was not aware of the grief component until my psychologist compassionately informed me.
Honestly, it’s pointless to attempt prioritizing if you’re in denial about how difficult and often sad your new reality is. After working through these emotional issues with a professional, it becomes possible to sit down and set your priorities with a clear head (ps the emotional work is continuous).
What if, after taking time to work through our valid emotions, we strategized how to spend our limited upright time on the things that actually fill us emotionally or strengthen us physically?
THAT is what my lifestyle hacks are all about.
How can I rearrange and reprioritize life to spend my limited energy on the things I love or need to feel fulfilled without neglecting the necessities of daily living?
For too many years I felt there was no answer to this question.
Often, there’s not a good answer. Almost all solutions involve sacrifices and extreme prioritizing:
predominantly of financial nature because we learn we must budget our lives around the tasks we can pay others to perform for us. But what of those who are barely making ends meet? My heart breaks for you, and I hope some of you will contact me to guest blog your experience on issues to which I cannot directly speak. I want to hear from those patients whom the burden is solely on you. No spouse, parents, or siblings to provide for you. I know the toll it takes on our finances, so I can only imagine the sacrifices you must make. What advice do you have for the Glass Body Steel Soul community?
Sean and I budget fiercely. Sean provides for me financially so I can manage my health. We are blessed with parents on both sides who would never allow us to end up bankrupt or homeless if the worst occurred. Yet still, we are two people living on one salary, and we often find ourselves stressed over finances and medical expenses. Just this morning we paid $800+ in medical bills. That number does not even include medication expenses.
I say this to acknowledge that many lifestyle hacks I will write about may not be financially feasible for some readers. I do not pretend to speak to your situation and invite you to come forward as guest bloggers on Glass Body Steel Soul.
My lifestyle hacks can be of great value to those who find themselves in a similar or better financial state than me. Not all lifestyle hacks will involve finances, but I feel a need to address the financial reality up front.
Check back in tomorrow for my post about Shipt: a grocery delivery service. Yes, you read that correctly: unlimited grocery delivery for a reasonable annual price.