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I saw this survey in a post on Sarah’s Blog (at Seriously Sarah), so I thought I’d share as well. It was meant last week for Invisible Illness Awareness Week, but I figured that even if it isn’t officially that week anymore, it’d still be good to share this! So, here are “30 Things You May Not Know” about my life with POTS.
1. The illness I live with is: Postural Orthostatic Tachycardia Syndrome (POTS)
2. I was diagnosed with it in the year: August 2004
3. But I had symptoms since: February of 2004
4. The biggest adjustment I’ve had to make is: The average “daily living” things that I do. I’ve had to change how much fluid I drink, my salt intake, my foods, how I stand throughout the day, how I do my workouts, and how I have to travel. It just underlies most things that I do.
5. Most people assume: That I am totally fine or making something up. For some reason I think it’s easier for people to assume that then to go online, read a website, and realize that I’m being completely accurate about what I’m saying. I also don’t often show or talk about POTS to people unless they were close to me, so most of my clients and people in the pilates barre class I teach would have no idea about my diagnosis.
6. The hardest part about mornings are: Getting out of bed/the head aches and aches in general. Most mornings when I wake up I feel pretty flu-ish. My head throbs, my joints are stiff, and I’m pretty sore- I feel like I’m pretty old most mornings. Once I get up, get moving, and stretch out I’m normally ok. Waking up is hard enough on a good day, but POTS makes it even more overwhelming.
7. My favorite medical TV show is: I’ve watched all of House, and I still watch Grey’s Anatomy. I love both of those shows, even though they definitely aren’t realistic.
8. A gadget I couldn’t live without is: My iPhone! I can’t imagine not being able to be in communication with so many friends and family throughout the day, and I love having internet and social media at my fingertips too! That being said, my 8 hours at work I’m face to face with clients, so I only have access to my phone or computer during the few minutes in between sessions. It’s sort of nice to have a job where I get to disconnect a bit!
9. The hardest part about nights are: the dizziness and insomnia. I tend to get a little more dizzy throughout the day (certainly not every day though!), so nights I feel pretty blah. Obviously the insomnia is a nighttime thing as well, and it certainly can make going to bed a really frustrating process.
10. Each day I take __ pills & vitamins. (No comments, please) On a good day I take 6 pills, but if I have a migraine I might take more like 10-12 in a day. I also occasionally will take magnesium and fish oil, depending on what my training schedule is looking like.
11. Regarding alternative treatments I: haven’t done too much of this. However, things like the neti pot bottle, compression sleeves, etc… have been really helpful.
12. If I had to choose between an invisible illness or visible I would choose: This is a tough question. I don’t get the same understanding as someone with a visible illness, but I also like being able to sit back in the crowd and not stand out too. I don’t know. I suppose pros and cons with both.
13. Regarding working and career: I’ve still been able to fulfill my dreams, but it certainly takes more work, effort, and forethought in coming to work than it does for my co-workers. I was still able to go to college on a normal schedule, and went straight to grad school afterwards! I was lucky in that.
14. People would be surprised to know: that I’m in physical pain most of the time. I often walk around with a lot of energy and a smile on my face, but that doesn’t mean that I’m not in pain while I’m doing it.
15. The hardest thing to accept about my new reality has been: the fact that I now have to live a life that most people won’t and can’t understand. Plenty of people in my life are sensitive to POTS, but obviously we can only understand something to a certain extend without experiencing it ourselves. It’s hard to know that people don’t always understand or get why I have to do certain things.
16. Something I never thought I could do with my illness that I did was: Run half marathons! I thought that most types of exercise would be completely out of the question, but I very slowly and patient built up my strength, and am now training for half marathon #7!! 
17. The commercials about my illness: are non-existent. I’ve never heard of any commercials about POTS. Most people have never even heard of it- including many doctors and nurses.
18. Something I really miss doing since I was diagnosed is: living life more effortlessly. I’m not saying that life is really effortless for many people, but there is so much energy I have to use in planning, preparing, and adjusting my life. I miss being my more carefree self.
19. It was really hard to have to give up: there wasn’t something specific that I actually had to give up. To go with the point above, I had to give up carefree living in a certain sense.
20. A new hobby I have taken up since my diagnosis is: Running! While I was really active before my POTS diagnosis, I never really enjoyed running. I’m not sure what clicked back in 2011, but I really started to enjoy running (and pilates!).
21. If I could have one day of feeling normal again I would: Oh my gosh- I have no idea. I would probably go on a run to feel what it’s like normally. Other than that, I think I might just plan a fun day with friends, and enjoy and soak in the feelings I have. But honestly, since I hardly remember what “normal” feels like anymore, I’m not sure I would take one day of feeling “normal”. I think it’d make the following weeks even more difficult for me.
22. My illness has taught me: how strong and resilient I actually am. It’s also helped me decrease how much I compare myself to others.
23. Want to know a secret? One thing people say that gets under my skin is: how could that many things actually be wrong with you? It’s really annoying, and what people don’t understand about POTS is that once the autonomic nervous system is thrown off, everything associated with it gets thrown off too.
24. But I love it when people: Ask questions about POTS. It’s SUCH an unknown illness to most people, so I’m almost always game for answering whatever questions that people have about it! Anything to spread awareness!
25. My favorite motto, scripture, quote that gets me through tough times is: I don’t have one favorite quote or verse, actually. I have a bunch of different ones. This one, by Helen Keller, is right next to my bedroom door: “Be of good cheer. Do not think of today’s failures, but of the success that may come tomorrow. You have set yourselves a difficult task, but you will succeed if you persevere; and you will find joy in overcoming obstacles.”
26. When someone is diagnosed I’d like to tell them: to take care of yourself but try to push yourself little bits at a time too, try to connect with others who have POTS (it took me years to do this, and it was lonely), and try to get information to your friends and family to read. And also- know that things do become more manageable!
27. Something that has surprised me about living with an illness is: hmmm. I’m not really sure. I guess I would’ve been shocked at age 16 before I was diagnosed to know how much joy and laughter there can still be in life, even alongside the pain and frustration and loneliness. 
28. The nicest thing someone did for me when I wasn’t feeling well was: give up time to cook meals for me, sat with me at the hospital for hours, etc… But really, to me it’s just about the understanding behaviors and willingness to be more low key, especially in the evenings, with me!
29. I’m involved with Invisible Illness Week because: there are SO many people with invisible illnesses, yet most people would have no idea! The more we can raise awareness for the things that aren’t visibly seen, the better off we’ll be!
30. The fact that you read this list makes me feel: thankful and encouraged! I appreciate you wanting to know a bit more about life with POTS! So thank you! 🙂
For more information on POTS, please click here.
I agree that going to bed is so hard! I know that I won’t get comfortable, so I dread it, but I’m also in pain while I’m awake. Your physical fitness is really inspiring! I gave up pilates and all of that when my symptoms got really bad, but I am working back to where I was!
Yeah, I had never heard of POTS until your blog. Invisible illnesses are tough. I can’t imagine feeling like that getting out of bed every morning. You are strong!
I just came across your site and am so relieved to find more people dealing with the same symptoms as myself. I was diagnosed with POTS in December 2013 after getting very sick with a virus almost 12 months earlier. Prior to getting POTS, I was a very avid runner, and had actually completed one full marathon and four half marathons. However, since becoming sick, I’ve completely give up exercising as I am so fatigued all of the time. I am 21 and am able to attend school full time, but the hardest thing for me to deal with is the fatigue. I just get so frustrated because I used to be so full of energy! I was wondering if fatigue has been a problem for you with POTS and if you’ve found anything that’s helped? I know I need to get back into exercising as I am extremely deconditioned.
Hey Meghan- I think I need to do a whole post on this, because I’ve gotten 3-4 questions on this topic alone in the last few days. Thanks for stopping by my blog and saying hi! If you’re on facebook, you should check out the athletes with dysautonomia page. There are lots of us out there.