As hard as this is for me to do, I am going to share with all of how my illness effects my life. I mentioned before that I would bring you into my dysautonomia world and here it is. I’m not looking for pity or sorrow. My only goal out of sharing this is to help someone, somewhere who may be suffering and who is looking for answers. I want to help bring awareness and if that means putting myself out there to share how Postural Orthostatic Tachycardia Syndrome (POTS) has changed my life then so be it.
Saturday morning started like any other, with my husband letting me sleep in. I woke up at 8:00a, two hours later than normal. I took my time getting up, had breakfast, took a shower and got dressed. (Keep in mind showering does take a lot out of me but as long I go slow enough and take breaks I manage pretty well). Jacob ended up falling asleep early for his nap so I did some very light housework, made the bed, picked up the toys and started the laundry. I sat down to watch a movie the rest of the time he napped. When he woke up, my family and I went to the mall. (I’ve been on the hunt for white leggings for my Halloween costume for weeks!) about one hallway down at the mall I was out of breath, exhausted and sweating. Time for a break. Pumped me up with some Gatorade and the hunt continued. We slowed down the pace and I was able to finish the mall trip. I was pretty tired when we got home so I took a small break on the couch. But next week is Halloween and we have not carved our pumpkins at this point yet. So my husband prepared the table to do it before dinner. Of course I wanted to join in on the fun, anyone who knows me well enough knows I LOVE the holidays and decorating just about anything. I’m not going to sit this one out! I helped my son paint his pumpkin and I chose to paint and sparkle my pumpkin instead of carve it this year. I got about 1/3 of my pumpkin done and I just knew I pushed my body way too far. This instant hot and heavy sensation overtook my entire body and I couldn’t even move anymore. I was instantly lethargic and I almost collapsed to the floor. I somehow made my way to the couch to put my legs up to get the blood back up and flowing again before I passed out. My husband had dinner prepared so he had helped me back up and with tears in my eyes I stumbled over to the table. I sat in the chair watching my family begin to eat dinner as I tried to move my arm to eat as well and I couldn’t pick up my hand. My body was so weak and tired that I wasn’t strong enough to move my arm. As tears fell from my eyes, I sat and watched as my two-year-old son fed himself and said, “mommy eat”. I was embarrassed and humiliated. After my husband finished, he then had to feed me, a grown woman, as our children sat and finished their meals. I slept in, took a shower, made the bed, picked up toys and walked into about 5 stores at the mall and painted half a pumpkin that day. That was way overdoing it for someone who struggles with dysautonomia. How can a fun family activity like carving pumpkins turn into not being able to use your arms or legs?
There is nothing pretty about dysautonomia and I would never wish it upon anyone. This is just one night out of many in the life of someone with dysautonomia. We need to bring awareness and fight for answers and a cure. I will never stop fighting for my life, I am a warrior. 💙💙#dysautonomiaawarenessmonth #pots #invisibleillness #neverstopfighting#helpspreadawareness #findacure

For more on my journey

For more resources, please visit:

Dysautonomia International

Dysautonomia Project

Dysautonomia Youth Network of America, Inc.

Dysautonomia Information Network (DINET)

Dysautonomia Advocacy Foundation

Dysautonomia Support Network