Hey! My name is Jeweliet Donley. I’m 19, and for the past year, I’ve been on a hunt to learn my way around the diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome). My life has changed drastically since my diagnosis. I was hospitalized with Toxic Shock Syndrome and during that time in the hospital, I was also experiencing heavy flares (unaware that POTS was what I was dealing with as well). I was sent home still knowing something wasn’t right, and then went on a search to find a doctor willing to do a tilt table test, followed by 2.5 months of wearing a heart monitor to try and get more answers. It took so long to get confirmation on what exactly my body has been going through. I have SO much more to learn and SO many things to still figure out how to manage…as well as other diagnoses to either confirm or rule out. But here are some things I have learned along my journey! 🙂
5 invisible symptoms:
- Stomach issues/ sensitivity to SO many foods that make me flare.
- Muscle and neck pain/ weakness.
- Brain fog and plenty of migraines.
- Extreme fatigue/ multiple energy crashes throughout my day that come with dizziness.
- Debilitating health-related anxiety/ depression.
Four things that help manage my pain:
- Therapy – I have gone to therapy since I was in my single digits, but I have noticed in so many ways how even more important therapy is to me now. Chronic Illness is quite isolating and can feel extremely lonely at times, so having someone who I know I can open up to is extremely important to my mental health and physical health! I have always been a very independent and strong person- but with POTS, I find myself needing help. Having a professional to teach me how to not be afraid or ashamed to ask for help or speak up about my condition even when I do not want to or feel embarrassed, has saved my butt more times than I’d like to admit…haha. Sometimes you just need a safe place to release all of those emotions, worries, or pains, even if it’s talking about how much you HATE dealing with your chronic illness, or if it’s simply letting out a good cry or yell. It’s been one of the most important things to me since being diagnosed.
- Electrolytes – As a lifelong past athlete, I don’t think there was a time in my life that I was ever UN-aware of the importance of electrolytes. But, ever since learning myself about electrolytes with POTS and how my body uses its energy so quickly now, and how I get drained/ affected so sensitively to everything, these have been essential for me to feel okay throughout the day. Whether it is a squeeze-in flavored or unflavored electrolyte or a powder mix-in, or even just a zero-sugar Gatorade if I’m out and about, these electrolytes can do wonders for me being able to still enjoy my day or feel confident about going out to have a fun time with friends. For me, sugar does not mix with my symptoms well, so I go for anything with zero sugar since I add these into my everyday waters or Gatorade.
- Slowing Down – I’ve learned very quickly that I cannot do things at the pace or duration I once was able to. Slowing my day down or even just giving myself the grace to take many breaks, even on the smallest things, has really helped me. So sometimes my days center around one bigger thing I have to do like my work. Since I work at a restaurant, I will not do other energy-using activities or chores that day so I can be as symptom-free as one with a chronic illness can be…lol…Or sometimes my days don’t really have a choice to be slow, so I have learned to fit in breaks when I can, like even just an hour to nap and “reset” my body a bit before going on. It could be as little as walking around the mall and vocalizing that I need to take a break and sit, or that I need to find a food court and grab a drink. Sometimes when I am at work and am becoming symptomatic, I vocalize it, and lay down in a different area of the dining room with my feet up for 15 minutes, so I can then continue my shift. All of these things are a must-need in my everyday life to feel well.
- Smaller Meals – My diet with POTS is still something I struggle with SO much. I’m definitely still trying to figure out managing my diet, but for now, eating smaller meals and more frequent snacks really does help me from feeling really sick or from becoming symptomatic. I’m in the process of figuring out why my stomach and food sensitivities have been such a huge issue for me, but I do know for a fact that eating a lot of food quickly, or only having 3 large meals a day does not help me have a productive and smooth day when managing my POTS. I try to bring “safe” foods with me wherever I go and communicate with the people I’m going to be around that day about my food struggles so I can make sure to take care of myself even while I am out in order to manage my symptoms and pain.
Three ways my life has changed:
- Food choices!! Geez, this has been a huge alteration in my life. There are SOOO many things that I used to enjoy on a daily that now flare my symptoms really bad, or now give me severe, and odd stomach issues- so I now have to always be hyper-aware of what I eat…especially if I’m traveling or going out, or even going to a celebration or holiday. I always think, “Oh man, am I even going to be able to find something I’m able to eat here??” I have had to learn that it’s okay to reach out to people hosting small group get-togethers to make a note of some things that I can tolerate eating, so I know I will have things I can eat. I also try and be conscious to not leave until I have eaten before, and I try to pack some things to bring for myself too! It’s been really challenging to adjust to this new way of eating, and it makes eating out feel more like a scavenger hunt rather than a relaxing, silly, little outing to go out and try something new!
- My Activities and Hobbies- Growing up, sports, working out, concerts, and outdoor activities have always been my happy place, and those things felt taken away very quickly with my diagnosis. My body can’t do the things it once could do when it comes to the things I enjoy doing the most, and that has changed my life in some bad and some good ways. Slowly, I am working towards being able to work out again. This is MUCH easier said than done, and I bet many of you fellow zebras also know that defeated “this is impossible” feeling when trying to exercise. I’ve now worked my way up to be able to do about 4 exercises laying down, which hey…a win is a win…so, I’ll take it for now! It is really difficult to go from being a very strong person to not being able to do something you used to score as a “warm-up” in the past years. But, on the bright side of things, I have rekindled my passion for writing and admiring the beauty of things I can do which is new for me! With more time, I hope to see more progress in my physical ability but for now, I am learning quite a lot of things to do that do not take much energy out of me, and that has been really interesting : )
- Always Looking for Answers- Up until my hospital stay, and other than having COVID before that, my health was fairly good! The only appointments I went to were annual checks, or for annual flu shots… nowadays, I’m constantly planning my next appointment, I am always looking for new doctors, and I spend a lot of time reaching out to any professional who may be informed on POTS. I am always looking for advice or connections on how to manage my POTS. My days are filled with phone calls, Google searches, trying new medications, trying to reach out to others who may have advice, and/or appointments with specialists to learn more about POTS. It has been a huge change! Before POTS, I was never in the hospital enough to get to know the workers there, but now I do! This way of life is definitely something I have had to get used to…from taking days off of work because I have an appointment of some sort, to getting used to the fact that I’m becoming more comfortable in places like doctor’s offices and hospitals…This has become my new normal.
Two people who inspire you and give you hope:
- My Mom : ) She was the loudest advocate for me during my stay in the hospital. She never stopped mentioning to doctors that there was something more going on with me than just Toxic Shock. Even when the people at the hospital would not listen to me, my mom was my voice when I was losing hope and just down and out from being in a bed for so long. My Mom also goes to as many appointments as I get scheduled just to make sure that I’m being heard by the doctors. She has always been there when I have needed to just be sad and mad about the fact that I was diagnosed with this, and she is the first person to jump and make sure I have what I need. My mom is there when I get a random burst of confidence to try a new food or a medication that I’ve been fearing to try. She takes the time to read about what POTS is even without me asking just so she can try her best to understand what I’m going through every day… she has always been there for me–to comfort me, to encourage me, to listen to me, or to just sit in silence with me when I need someone. She is a lot of my strength that I hold on to.
- My Girlfriend! The one that slept right next to me in that tiny hospital bed for over a week with cords all over me, IVs, blood draws, and the never-ending tests that I had to go through. She was there for all of my appointments after my hospital stay. She had moved in with me only a week before all of these health problems happened to me, yet she never left my side. She has shown up for me in more ways than I could ever ask; especially when I feel so weak and embarrassed, she picks up those pieces for me and always goes the extra mile when I’m not feeling well. She has continued to show me unconditional love in our relationship and unconditional love with me having a chronic illness. It is truly incredible. She is there every step of the way and does so much for me, so I never feel alone.
One Thing you want people to know:
Even though there is no “end date” with chronic illness to look forward to like when you have a cold, it’s okay to still give yourself grace on hard days…or weeks…or months…
I think I struggle with feeling like, “Well I already gave myself a break, another would look “extra” which isn’t something you should worry about. We are a group of people who regularly deal with some of the hardest physical and mental challenges every day. We deserve to give ourselves time to adjust and care for ourselves. Most of us are living lives that would require someone who isn’t going through chronic illness to still need moments of rest. That makes us that much stronger. Never stop giving yourself grace and kindness…. even on the good days<3.