Flowly Feature

Living with Long COVID

Welcome to our first ever Flowly Feature with Lilly from @lilsdowns

Each Flowly Feature will highlight a hero on their health journey so that we can get inspired, pick up a tip or two, and remember that we are not alone đź’™

Tell us a little bit about yourself:

Hi! I’m Lilly and I am 18 years old. I contracted Covid-19 in November of 2020 and have spent 8 months in the hospital since then.

What has your personal health journey been like?

I have spent multiple important days fighting for my life in the ICU, including my 18th birthday.

Covid-19 had taken over my entire body. I have gastroparesis, which means my stomach and intestines don’t like to digest food. So now I have a central line to administer TPN (IV nutrition) and IV medications. I also have 2 feeding tubes surgically placed in my stomach. A G-tube, which goes into my stomach and drains stomach contents to prevent vomiting. The other tube is a J-tube, which goes into my small intestine to administer medications and formula.

Due to the lack of GI tract motility and TPN, I turn septic and get very sick easily. Sepsis is terrifying and deadly, and something I wish no one has to experience.

  • Covid has also caused Behcets Disease - a form of vasculitus that affects the entire body.
  • SMAS - a compression of the duodenum causing an obstruction
  • POTS/dysautonomia - nervous system cannot control the non-voluntary functions such as heart rate and blood pressure.
  • Small Fiber Neuropathy - causes intense nerve pain
  • Ankylosing spondylitis since 2015.
  • Multiple GI bleeds - one where I went into hemorrhagenic shock and lost a large majority of my blood.

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What would you tell the past version of yourself when you first began your health journey?

I would tell my past self that she would end up with amazing doctors receiving incredible care. Because I got sick in 2020, doctors were not receptive because “long covid” wasn’t even a known condition. But now, I couldn’t ask for a better team of physicians, nurses, etc. They go above and beyond in every way and I am so thankful.

Here at Flowly, we are all about cultivating a flow state. What does a state of flow feel like or look like to you?

When I am in a state of flow, I am light. I don’t have the weight of my trauma, stress and fear sitting on my shoulders. My brain feels quieter, safer and relaxed.

When do you feel the most "in flow" in your life?

I feel the most “in flow” when I am driving my car with the top off, screaming Taylor Swift, and driving up to see the sunset. Driving helps me feel independent and has become such freeing activity.

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How do you balance taking care of your health on top of everything else in your life?

I love to make TikTok videos to show that chronic illness doesn’t stop me from living a life that I love. There’s so many medical tasks that have to be completed throughout the day and appointments throughout the week, so sometimes it feels like it takes up all of my time. But balance is important with everything in life, so I always make an effort to do something that I enjoy everyday. Even if it’s just a short drive, it really turns my entire day around. Making TikToks also helps me with balance, because filming and editing has been a passion of mine for a while. So if I have to do something I don’t want to do, sometimes making a TikTok will make it easier.

What resources have helped you on your journey?

  • I have to start with my heating pad because I swear it’s on me 24/7. I use it all over my body and it really helps with pain!
  • Electric pill crusher - I have to crush all of my meds and put them through my J-tube, and an electric pill crusher is much easier than the hand held ones,
  • GetMyID watch band sleeve - it’s a sleeve that goes onto your Apple Watch. It has a QR code that can be scanned in a medical emergency and bring up your allergies, medications, etc.
  • Biofreeze/anything that feels cooling - helps a little with my muscle pain and headaches
  • Mighty Well Backpack - makes it so much easier to carry my TPN, feeds and emergency supplies

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Shout-out a source of love in your life!

My mom, the smartest, hardest working woman I know. She is my best friend and takes the most amazing care of me. She keeps our family afloat and handles most of my health stuff. I’m so grateful for her.

Where can we follow your journey?

@lilsdowns on TikTok and Instagram

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Know a hero you think we should feature? Send us a message at contact@flowly.world! đź“©

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