A Penny for Your Thoughts

Wow, it has been a while since I’ve written anything for this blog. I’ve been reading more about the spoon theory, and it’s made me think a lot about my energy levels. Now I know there are a lot more people who know a lot more about the spoon theory than I do, but reading about it did make me realize how much it applies to me (which, big surprise, is probably because I have a chronic illness!) Ha ha, but in all seriousness, I do feel like I have to save my energy and make decisions on how to spend my energy because I do not have a lot of it.

On Friday, September 18th, I went to go see Fall Out Boy. I am in love with this band and have been for quite some time, and it was my first rock concert! I had an awesome time with my dad and my best friend Erica, but by the end of the night I was exhausted, and I don’t mean the “That was sooooooo amazing but I’m tired”, no, what I mean is I could sleep for an entire day and not wake up after that concert. I mean my dad literally carried me to the car, I am almost seventeen years old and my dad carried me to the car because I could not walk back. What I mean is I was exhausted to the core, if I had to get away from a serial killer I wouldn’t have been able to do it. I took three naps that day and I still slept that night for close to eleven hours. The next day I rested, I had to because I had used up all my spoons (and then some!) the night before.

After researching, and actually I’m still learning more about the spoon theory, I’ve come to realize how much a good analogy like spoons related to my energy levels is such an accurate representation of what I’m going through.

Also, one more little thought, I have finally found some exercise that doesn’t exhaust my body entirely, and I just needed to share it with you all. YOGA is fantastic, I’ve really enjoyed taking a yoga class because it is something that is very “more at your own pace” and it really centers me for when I’m feeling off balance. Now obviously when I’m dizzy, I can’t do some of the standing poses, but even the sitting ones are better than nothing. I used to be a gymnast, so I have always had good balance. When my POTS is keeping it’s distance I have fantastic balance, which is why I love yoga, but also because again, I can just sit down when I become light headed. Anyways, we’ll see how I feel about it in a few weeks, I’m just getting started, but so far so good, and it doesn’t wear me out like some other things do!

Until next time!

Bethany 🙂

It’s not all rainbows and butterflies…

“You don’t look sick…” Um, thanks? I’m glad my fake smile looks real! I get compliments all the time, and I really do appreciate it, often when I feel bad I don’t feel pretty. This is a touchy subject for people with an “invisible illness” because we don’t want to get mad at people, or at least I don’t. They didn’t purposefully say it like that (or maybe they did) but they didn’t hopefully mean anything by it.

Well anyways, I had a rough day. First things first, I would just like to vent for a moment because I had three tests in three different classes all in a row today. Teachers, can you please please please find another way to torture us? Because that is just cruel. I swear, I love my teachers, but they need to plan better. Also, fire drills at school: not the best way to start out the morning when you have sound sensitivity and they decide to blast a loud screeching sound at 8:30 in the morning to a bunch of half asleep teenagers. So I went to the counseling office and took a nice nap. And then again I took another nap this afternoon and slept fifty minutes into my history class. Lovely. I know a lot of POTS kids can’t go to school, and I do feel lucky enough to have my symptoms managed enough to be able to go, but boy, its not all its cracked up to be. I go to school, come home and crash. Literally. My body aches, my head hurts, I feel like I could either throw up or pass out, or both. Note: Teachers who keep their air conditioning running even though it’s only 70 degrees outside; can you just not? Your room is like 60 degrees and the constant cold is killing (read KILLING) my head. Here’s my advice for the day; stay positive even when things seem to not be going your way. Yes, I had a bad day, but it’s just one bad day, hopefully tomorrow will be better. Also a quick note before I go, my baby dog Teegan (who isn’t really a baby anymore, she’s six!) is having mouth surgery tomorrow morning, so please pray that it goes well! Thanks so much!

Bethany

POTS and Autonomic Dysfunction

Hello everyone, it’s been a while since I wrote and a lot has happened. I’m working on blogging a little bit more and one of the things most recent on my heart and mind is chronic illnesses. I recently took a tip to Mayo Clinic in Rochester Minnesota, where I was diagnosed with POTS and Autonomic Dysfunction. This wasn’t a huge surprise for me because I had been diagnosed with POTS by a doctor in Michigan, but he wasn’t sure and wasn’t familiar with the condition so we were referred to Mayo Clinic. Six months after that first diagnosis we took the ferry across the lake and I was diagnosed with POTS and Autonomic Dysfunction. Chronic illnesses are very common, whether its POTS or anything else, you may not know someone has it. POTS kids don’t wear casts or look sick in any way. We might look tired a lot or we might have to sit down more often, but other than that, there is nothing that looks seriously wrong with us.

So here I’m going to give you a little background info on my diagnosis, and if you’re anything like me this stuff is actually interesting, for those of you that are like, I really don’t care about the statistics, then you can probably just skim this paragraph. First off, from all the doctors I’ve been to see, we have heard many times that POTS usually occurs in caucasian teenage females who are often high achievers. I was 14 when all of my symptoms started. Every POTS kid is different, there is usually a different “trigger” event and different symptoms. My first symptom was nausea, I was constantly nauseated from the moment I woke up to the moment I went to bed. My “trigger” event was a bad case of food poisoning, in which I threw up all night long, had fever, chills, I was terribly sick. After you have something like that you usually go back to being able to eat normally by the second week. I have never been the same since. The second symptom I experienced was this chronic fatigue. I had no energy, I wasn’t able to walk long distances, I got winded going up stairs at school, I just kept getting more and more out of shape. This started the summer of 2013. My next symptoms over the next two years were a chronic headache (that I still have to this day) and syncope, which means I pass out and have low blood pressure. We didn’t know it at the time, but this was all related to POTS. Doctors couldn’t figure it out, I was misdiagnosed a million times it felt like before we came to the conclusion of POTS. What POTS actually stands for is Postural Orthostatic Tachycardia Syndrome. It means that going from sitting or laying down to standing I pass out because my blood pressure drops instead of rises. This is where the Autonomic Dysfunction comes in. Not everyone with Autonomic Dysfunction has POTS, but everyone with POTS has Autonomic Dysfunction because Autonomic Dysfunction causes POTS. What this means essentially is that my autonomic nervous system is not functioning properly. Things I should be able to do automatically like digesting food, regulating blood flow, etc. doesn’t happen quite right in my body.

That’s all the info I will give right now, but if you want to know more about the illness, Click Here

What I’m going to be mostly focusing on right now for my blog is stuff surrounding my illness because I would like to spread awareness for any and all chronic illnesses like mine because they are often “invisible” illnesses that we just don’t know a whole lot about. My inspiration for this blog and my future blog posts was from this blog: https://lethargicsmiles.wordpress.com/ This woman is amazing and she has inspired me to write about my illness. I hope anyone fighting a chronic illness will see my blog or hers and be inspired like I was.

Until next time!

Bethany

Still enjoying this lovely weather, I felt great yesterday so we seized the day and took a trip!