I am wrapping up my first month working full time. As I said after week 1, If you asked me or Sean 3 years ago if that was possible, we would have answered both no and never.
For many patients, this still is and may always be out of reach. Every patient is unique in symptom presentation and management. Ultimately, this is a chronic illness that is out of our control (not an easy fact to accept). However, there are a few practices from which every patient might benefit.
Many of you already know my story, but if you don’t, I’ve found these four practices to be crucial.
1. See a specialist even if you feel there is no hope.
When I showed up at my first appointment at Duke 4 years ago, I did so with zero hope- a last ditch effort with the intention of keeping my promise to family that I wouldn’t give up on finding a doctor to manage a complicated and frustrating chronic illness.
Little did I know that Dr. Frazier-Mills and her team would fine-tune my pacemaker settings and medications so I could direct my limited energy toward yoga physical therapy.
2. Prioritize your physical therapy, whatever that is for you currently.
For many of us, this will mean saying no to other activities. Physical Therapy might be all your body can handle in one day.
There is no shame in that. If you feel shame, it’s time to check in with a counselor… which brings me to my next practice.
3. See a counselor, psychologist, or psychiatrist regularly- preferably one your Dysautonomia/POTS specialist recommends (someone who possesses an understanding of your illness and can delineate between physical symptoms and psychological/psychiatric symptoms).
Guilt and shame are common emotions accompanying chronic illness. You are far from alone in feeling it, and you are braver than you may recognize when asking for help to manage the psychological hurdles of chronic illness.
4. This last one is a newer addition to my quality of life… and it’s a game changer- an Oral Rehydration Solution (ORS) by DripDrop.
For several years, I’ve taken my hydration and salt intake very seriously. Why? Dysautonomia/POTS patients live with chronically low blood volume.
Even once I no longer passed out on a daily or weekly basis, I still crashed in the afternoons with weakness and brain fog. Due to the unpredictability of those crashes, committing to any kind of set schedule for work, whether part or full time, felt out of reach. I was still supplementing with IV saline prior to major commitments and trips.
A friend who is knowledgeable about Dysautonomia/POTS reached out to tell me about an ORS called DripDrop. I took him up on his offer to try samples, thinking it may be useful but not drastically alter my quality of life.
I assumed it was a standard electrolyte drink. Within a few minutes of finishing the first DripDrop, my nearly constant brain fog and weakness lifted. I didn’t understand how that was possible, which is how I found myself perusing DripDrop’s website. DripDrop was invented by a Mayo Clinic trained physician who was looking to save lives on a relief mission. He turned to ORS to treat life threatening cases of dehydration, but due to the unpalatable taste, patients- especially children- struggled to keep it down. Dr. Dolhun solved that problem by creating DripDrop, an ORS which actually tastes good.
I learned that there is a crucial difference between basic electrolyte or sports’ drinks and an ORS.
“To be effective, an ORS must contain a precise ratio of electrolytes. If the solution's balance is off, the solution’s hydrating potential is drastically limited. For instance, an ORS with too much salt can lead to an electrolyte imbalance, spiking blood sodium levels and exacerbating dehydration. On the other hand, a solution with too little sugar or salt, limits how quickly water is absorbed. Conversely, if the correct ratio is met, water absorption is maximized. In fact, one early test following Crane’s discovery suggested that an ORS with the right ratio of sugar and sodium could increase water absorption 2-3x.”
I drink DripDrop twice per day, per my Doctor's instructions- first thing in the morning when I take my other medications, and shortly after lunch in the early afternoon. It’s incredible how something so simple has drastically altered my quality of life and allows me to work full time.
As if that ins't enough, DripDrop's motto is #StickToYourMission - they are helping us stick to our mission by donating $1000 to our fundraising project supporting a medical study at Duke testing yoga as Physical Therapy for Dysautonomia/POTS patients.