What It's Like to Run a Small Business with a Chronic Illness

Man, I'm tired. I feel like I'm always some sort of tired or fatigued, which is normal, but I'm exhausted from constantly thinking about everything that I need to do and get done for the company. But, I have to say, this is the most motivated I've ever been for one of my projects. Admittedly, I've tried to make a lot of my little talents main jobs of mine, like Photography and Music, but every time that I got into trying to get everything started, I didn't really know where to go. I always got lost, lost my motivation, and just had it as a side job. This? This is my baby. Chronic and Cozy has been in the works for a while, with blood, sweat, and a lot of tears put in. Finally, I'm proud to call something my own and take care of it, and I'm so excited to watch it grow!

How do you make it all happen?

Well, firstly, this is my main job, so I have made pretty strict schedules for myself. I have a calendar that is broken down into hours and that really helps me utilize my time in a better way. So, in the morning, I get Jared off to work, and then chill in bed until 7am, to give my body time to relax before getting started with my day, and allowing some "Horizontal time" which is essential in any chronically ill person's life! I gotta get my spoons! (If you don't know what spoons are - Chronically ill people use spoons to describe their amount of energy costs for each event. For example, brushing teeth - 1 spoon, cleaning the kitchen counters - 3 spoons, Vacuuming - anywhere from 3 to 10 spoons, etc. It's a better way for us to describe how the little things even take a lot of energy for us. Frequently, we have to give up tasks in our day to supply spoons to more important things in our days, as well.) So I take my horizontal time to figure out how many spoons I have that day, and how much I'm going to get done. On Sundays, I make a list of the bigger house chores that I would like to get done through the week, and then allocate them to certain days so then I have time to recover from each big cleaning project. I usually have myself clean ,run errands, and take care of the house until about noon every day, but it always depends on what time I end up actually getting up in the morning. It's usually 7, but sometimes it's 8. Then, after I get all of my house work and errands done, it's work time. I do as much of my online work as I can during the day, like the majority of my filming or website work, and then in the evenings I like to work on my blogs and my creations!

What is the biggest challenge?

Honestly, I would have to say the biggest challenge of running this company is actively not dedicating all of my time to it. I try really, really hard to give myself at least one logistics day off as possible, as well as automating posting for some of my blogs so then I can write them ahead of time, in batches, and then have them posted on certain days. There are definitely more days that I'm more creative with my writing or more willing to get the writing done, so I try my best to get as many blogs done as possible on those days and get them out for you on Mondays, Wednesdays, and Fridays! But definitely, the biggest challenge is giving myself time off and taking time off for myself. I have always had a difficult time taking care of myself in that way, but especially now. I am working really really hard at giving myself only creation days, which helps a lot too!

What helps you through the hard days?

Jared, more than anyone, helps me through the hard days. He will always fill my water, make sure I ate and took my meds, grab a heating pad, whatever simple things that I ask him to take care of to help me, he does. Not only that, but he listens to every yap session, stressor, and moment of exhaustion, he picks me up off the bathroom floor when I need help and carries me through learning how to run this business on my own. He is my biggest supporter and helper. His mom, Yvonne, also goes out of her way to help me take care of myself and my business. She learns more and more about my medical issues and things that go along with running a company, every day, and does her best to support me and help me learn how to make this company to the best of my ability. She has always been a huge supporter and an amazing person that I get to have in my life. She continues to learn everything she can about my company every day. I also have an amazing therapist and team of doctors that has been helping me figure out what new has been wrong and going haywire in my body for the last 3+ years of an added issue. We have been trying everything, and still going in for more, and I'm so grateful that they are working so hard for me to get care and better.

Before I can explain the other things that I do at home to help my day-to-day, it's important to understand what POTS is and how it affects people who have it on a day-to-day basis. POTS, or Postural Orthostatic Tachycardia Syndrome is a form of dysautonomia which means that the automatic nervous system is dysfunctional, and sends the wrong signals to our brains and parts of our bodies. Frequently, people with POTS experience a multitude of symptoms, from fainting and dizziness, low blood pressure, heat intolerance, chronic pain, and so much more. And? POTS is frequently not the only thing diagnosed in an individual, as well as it is also frequently misdiagnosed as anxiety. People with POTS have to have a lot of salt in their systems to make their blood a little bit thicker so that when we stand, our blood doesn't pool to our feet as fast, which can cause us to pass out. While it is slightly common for POTS patients to struggle with fainting, it's not in every case. There is a subtype of POTS that people don't even pass out at all! I am unfortunately one of the people who does faint, so it impairs my ability to drive or stand for extended periods of time. So, what do I do to help me get through the day, let alone a hot market day?

• My Medication - The first thing is always my medication. If you don't have medication from your doctor, do not take medication that is not prescribed to you, or talked about with your doctor, and that includes any supplements. I have been given a list of supplements and a few medications to help my symptoms, and making sure that I take them every day, at the scheduled time, is extremely important. If you have a hard time with time blindness like I do, set alarms on your phone that are labeled so then you remember why they're going off and why you need them there. For example, I have to take one of my medications 3 times a day, 4 hours apart, without going past 4-5 pm. So, I know that the latest that I can take the first dose in the morning is 9 am. I take the first one, and then go into alarms that I already have labeled, and then edit the time to fit what I need for the day.

• Mobility Aids - I'm 22 (in a few days), and I have a cane and a walker. That often feels embarrassing for me, but I am frequently reminded by my family that I need them, so I have nothing to be ashamed of! My cane collapses, so it "lives" in my backpack with is my pots bag and purse. I usually only need my walker on big outings, so that "lives" in the back of the truck that I drive. As weird as I feel about them sometimes, they help SO MUCH!! My cane (I'm trying to name it, so comment any name ideas please... I'm thinking Loosey Goosey??) helps me just get some of the weight off of my legs that helps me stay walking for longer periods of time without needing to sit down or take a break. My walker helps on my really bad days, when I probably shouldn't go out, but I need to. It gives me a place to sit when I need it, and takes the weight off of both sides of my legs when everything is hurting. It has honestly been so helpful to help me get from place to place without needing to hang out and wait. I took it to the DMV and it was the best thing ever, honestly.

  

  

• Portable Fans - I have these little handheld fans that I take with me everywhere. They are the best!! One is shaped like a bear, and it has a few different speeds and a flashlight on it, and it is definitely my favorite one. Even in hot temperatures, it cools doesn't just push around hot air, but actually makes a difference. The other one that I carry is a portable charger, fan, and phone stand all in one, so that one is really nice for when I'm sitting at an event or on an airplane because it will point the fan at my face and I can sit hands free with it if I wanted to. These were honestly big life changers in my stock and I'm always looking for good fans like these!

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  Electrolytes, salt tablets, and glucose tablets - My POTS has also gifted me Reactive Hypoglycemia, so having glucose tablets is essential for my blood sugar getting scary low. I have pretty much the exact same thing in salt tablets, which are flavored, but are packed with electrolytes to help build up the body's salt content and thicken the consistency of my blood. When I stand up, or get up from a laying/ seated position for too long, my blood will pool to my feet really quickly, and not pump back up to my brain. Water and electrolytes are so essential to my daily life, I have to drink a LOT of water, and I'm one of those people that gets sick of the taste of water very quickly, so having flavored electrolytes helps a lot, and helps keep my symptoms managed!

  

• My Apple Watch - My apple watch, along with an app called TachyMon has helped me a lot with figuring out my symptoms and keeping better track of my heart rate. It'll start vibrating when I get tachycardic and record how long my heart rate stays that high, which has been awesome, so I can show my doctors what's affecting me and for how long. It can also usually tell before I can that I'm having symptoms or my heart rate is fast. It's honestly helped a lot with knowing to sit down or at least slow down for a few minutes, to let it return to normal. Personally, I pass out if my heart rate is over 160 for about 2 minutes or 180 for about a minute, from what I can tell. Any number higher than that for an extended period of time is really big cause for concern, and usually leads to an ER visit.

  

• Blood Pressure Cuff - This has honestly been great to have to check on my blood pressure when I'm not feeling well. When I am standing for too long or get up too fast, my blood pressure drops a lot, so having a cuff to check it when I'm not feeling good has been essential. I also like to keep this on hand since I'm on medication that will raise my blood pressure, so it's good to have on hand to make sure that my blood pressure isn't too high or dangerous.

So, all in all, running a small business with a Chronic Illness is really difficult, but with the right support system behind you, and the right ways to monitor your illness with a doctors help, you can very well do it. It's a lot of hard work, perseverance, and working from my bed. It's a lot of "I'm not going to film today, so I need to work on this many other things". It's a lot of checklists, expenses, and worry. But more than anything, it's a lot of fun. Chronic and Cozy has become like my own little baby. I'm so proud of it and I love being able to have the chance to make this little company happen.

Thank you for reading! If you have any suggestions as to things you would like to hear about or have advice on, please feel free to leave a comment!

Peace, Love, and all the above,

Ella Marie <3