Pressure

Welcome back! Missed my last post? Check it out here! Thanks for coming back ❤

This blog post has been one that I’ve been struggling with posting. I’ve been very real and open in my blog posts and I hope that that comes across. My goal is to really fully communicate every part of my experience, and to show every pretty and every ugly part of dealing with chronic illnesses. This post is just a little more personal. I’ve talked about how I got diagnosed, how people around me dealt with it, and vaguely alluded to me having a hard time dealing with it, and now I’m going to dig into that a little further.


I believe that mental health and chronic illnesses are two of the most underrated things; both falling under the “invisible illness” category, people tend to stay away from them or not talk about them as much. These two things practically rule my world, they’ve both limited me in different ways, and I’m working to improve both. I think it’s only fair since I’ve talked about all of my physical limitations to talk about how my mental health has impacted me.

I’ve always been a very driven and very motivated person. I put lots of pressure on myself and had high expectations for myself, and mostly, I met them. I expected perfection in every area; academically, as a friend, as a daughter, in extra curriculars, in the way I dressed and presented myself, you name it, I was trying very hard to be perfect at it. A lot of students grow up with pressure from their parents, but this has not been the case in my family. I have loving, supportive parents who haven’t ever cared about my grades as long as I was putting everything I could into everything I did. All the pressure was from within myself. It’s what kept me going in school, what kept me trying to improve and what kept me competitive.

This pressure, without being limited, started to cause problems when I got to high school, when I go to much harder and much more intimidating classes. I wasn’t getting the 100s I was used to with ease anymore. I was constantly stressed out in my tougher classes, but still forcing myself to take them because I thought that people around me would be disappointed or change how they viewed me. I didn’t want to be a quitter, I didn’t want people to think I couldn’t handle the challenge, so I just pushed through. For a long time it kept me from diving into the subjects that I love: theatre, photography and sign language. I felt so passionate for those things but felt an immense pressure to keep my class levels high. I started feeling overwhelmed. I didn’t know how to change my habits, and so I did nothing. I was constantly talking down to myself about my grades. I started believing that I wasn’t good enough to get 100s anymore, that I wasn’t smart enough to balance everything I had going on.  I was stuck in a battle against myself.

I really believe that I would be in even worse shape if I had not started showing all of the physical symptoms that I did. I have definitely gone through a lot of mental health problems BECAUSE of my physical illnesses, but I think that it has opened more doors for me than closed. It got to the point where I was being physically stopped from keeping up with my classes. Hard to do Algebra when you’re shaking in pain, hard to go to school when your body keeps you up all night, hard to pay attention when you feel like you’re going to pass out. My body was screaming at me to take a break. I thought I had compromised enough going into my junior year that it would allow me to have the challenge without causing too much damage. I signed up for two AP classes, English and Physics.  This was tough for me, I had friends that were in four, five, even six AP classes for junior year. I beat myself up about my course load, I was continuing to put the same amount of pressure to be academically perfect as I did before I was diagnosed. I was just as smart as them, why couldn’t I handle those classes? Why couldn’t I balance everything just right to keep up with all of my passions as well as the difficult classes, family, friends, health, and things around the house? The answer was one that I really didn’t like: because I’m not Superwoman.

After being forced to stay in bed and deal with my feelings, I was able to slowly come to terms with my new reality. Social media became a great place for me to find other people like me, other people with the same frustrated feelings, other people with the same physical pain. With every update I saw how other Spoonies had to quit school because of their illnesses, how they had to adjust their school or work schedule, how they felt stuck because of their illnesses. I related to every one of these feelings, even if I wasn’t going through the exact same thing. I learned from them that I had to do what I needed to do to take care of myself before I wound up in the hospital just because I’m stubborn. I learned that everyone can handle different things, because everyone is going through something different. The comparison between my classmates and myself just wasn’t fair. I’m grateful for the people I’ve connected with on social media, I’m grateful for people who showed me that I need to put my health first, and that I needed to forgive myself for not being able to do everything I used to.

In February this year, I worked with my counselor and Assistant Principal and dropped my AP Physics class, as well as pulled out of the UIL play (competition play) the theatre department was putting on. I used this time to rest and take care of myself. And the world didn’t end. I felt stronger at school, more confident in my grades, and overall physically and mentally better. I start my senior year next Monday, the 28th, and I’m signed up for just one AP class. I’m signed up for classes that I will enjoy, that will help me learn about the subjects I’m passionate about, and classes that will allow me time to take care of myself. I still very much struggle with having unreasonable expectations that I can’t hit, but it something I’m working on. I’ve learned to put things in perspective and learned how to take care of myself.

Mental health (or lack thereof) has had a huge impact on my life, as well as so many other kids, teenagers, and adults. I encourage you to be a friend. To make it known that you are there for others; having someone to talk to could be more important than you know. I also hope to encourage you to talk about mental health, to treat it as just as important as physical health. It can be just as limiting, and just as harmful.

Thanks for reading!!

Staying strong, Spoonie Cutie

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New Normal

Well…it’s been a day or two (or like 4 months) since I’ve written on here, but I didn’t want to write unless it was about something I was passionate about, or unless there was some major updates about my life. I finally was inspired about something to write about- adjusting to life with chronic illnesses. So… here we go gang! 🙂 If you missed my past two blog posts, check them out here and here!

After many many trips to many many doctors, Dr. Patel looked at me for about five minutes and was able to diagnose me. At first, I felt like laughing. It was so strange to see how perfectly the diagnoses fit with everything I’d been feeling, like finally completing a difficult puzzle. Every single symptom I was experiencing then, and every single unexplained symptom I had ever experienced had just been all connected together with two little acronyms. Science is pretty freaking cool. That grateful and happy feeling unfortunately didn’t stick around though, and realization set in about what this meant: all the crappy stuff I’d been dealing with up until then wasn’t going away, and there wasn’t much I could do about it.

I remember feeling two main things: anger and defeat. Those feelings still come and go, but I feel much more secure and much more at peace with my diagnoses. The feelings I felt initially threw me into a bad place. It seemed like my life had been taken from me. Would I be able to continue theatre? Would I have to drop my hard classes? Some nights I couldn’t get my homework done because of how I was feeling- would I be able to stay at school? I look back at my reaction to my diagnoses and I wish I could say that “it all seems a little silly” and “how could I have even thought that”, but the truth is, these are still questions on my mind. The difference between then and now is that I’ve accepted that my illness means I’m going to have to make some changes- I’ve accepted that my health needs to come first, no matter what needs to change in order for that to happen.

Another adjustment that had to be made was another internal and difficult adjustment to dealing with people who invalidated me, and to dealing with people not caring about what I’m going through. That statement makes it sound like the people I deal with are horrible, but they’re not, and this is unfortunately a journey that every person dealing with chronic illness has to face. If you’re reading this and this is brand new to you, use this as a wake up call, use this information to become more aware, more educated,  more empathetic towards people with chronic illnesses- and honestly, people in general.

Although it seems like it should be common knowledge, before I was living it, I didn’t ever really think it through all the way: you don’t get used to being in pain. I am in pain pretty much constantly, but that doesn’t mean that it hurts less since it happens all the time, it just means it sucks, all the time. I don’t get used to any of my symptoms, unfortunately. I don’t get used to almost falling over every time I stand up, I don’t get used to getting out of breath doing simple things like switching over laundry, I don’t get used to not being able to go up stairs without taking a break halfway up. My illnesses have an influence on every single thing that I do now, every single decision I make, it’s something I always have to take into consideration. If this is not something you have to deal with, you’re lucky! Ignorance truly is bliss. Not knowing this feeling for 16 years of my life was great, but now that I do have this in mind all the time, it has become something I see a  desperate need for more awareness, because this is not a rare feeling. According to the National Health Council, chronic diseases affect about 133 million Americans. While each and every one of those people has a varying degree of severity to their illnesses, you can bet that a huge portion of those people are going through exactly what I do everyday.

Before I start explaining what I’ve gone through in dealing with difficult people, let me preface with saying that I have great friends, family, teachers, and doctors. None of the people that I surround myself with are “bad” people, and none of them mean harm with their words. It’s not hard to invalidate someone with a chronic illness, I mean, look at us. We look completely healthy, we probably act like we’re fine most of the time so as not to worry anyone or draw attention unnecessarily, so why can’t we *insert some physical activity or activity that requires a lot of standing, etc. here*?! Or, how come we sometimes are able to do *insert thing* and sometimes we’re not? Honestly, these aren’t really unreasonable questions, but for me personally, I felt like I had answered them a million times and was still getting asked by the same people. Sometimes they wouldn’t directly ask them, but I would hear through others later that people were talking about me saying something along those lines. Another thoughtless comment is about how “lucky” I am to have certain things given to me (like my elevator pass, my one day extension on my homework for when I’m feeling bad). These things are given to me to keep me from feeling worse, despite how it looks. It’s easy to make these comments, to judge others based on their looks (my misleading look in this case, is that I look healthy), but I challenge you to think through everything you say. I challenge you to catch yourself and correct yourself when you make comments that could potentially harm someone. With 133 million Americans being affected by chronic diseases, I challenge you to find someone to keep in your mind to keep you conscious of your words and choices.

Thanks for reading!

Staying strong, Spoonie Cutie.

School with POTS & EDS

After writing my first blog post, I felt so great. Finally having an outlet and a place to keep everyone I love informed on my life is fantastic. After giving that post (probably way too much) time to seep in, I’m back and ready to share more. This time I thought I would bring everyone up to speed on my schooling- how I personally am dealing with going to school with chronic illnesses. If you haven’t read my first post- please check it out here!


 

I have always been very driven when it comes to school; I took as many honors classes as I could as soon as I got into middle school, and my sophomore year was no different. Taking away my symptoms, the class load I signed up for was one that I could handle with ease. I’m good with time management, I use every opportunity I can to finish my work- there should’ve been no problem. Unfortunately, my symptoms were very much present, and this load was killing me. I pushed through the year with late nights and lots of stress, and grades that- to me- didn’t show how much energy I was putting into things.  The class load I had signed myself up for my junior year was even worse than the one I had pushed so much to get through- with predictable results: this school year has been harder than any previous school year.

I think the hardest thing I’ve dealt with since being sick is not the pain or fatigue, but it’s trying to deal with the fact that my life is forever changed because of these illnesses. Despite the amazing technology that doctors have access to, and the wonderful advancements they’ve made, finding a cure- or even a reliable treatment- for either of the chronic illnesses I have has just not happened yet. That doesn’t mean I’m not hopeful that they will find one, of course. It just means that right now, this moment, my reality is that I will have these two chronic illnesses and their fun symptoms indefinitely. Dealing with this reality has not been easy, and I’m not sure that even a year after being diagnosed that my mind has fully wrapped around the idea of being “sick forever”. I’m never going to stop looking for answers or ways to find relief, but I am trying to make peace with the way things are now, so I don’t feel stressed and depressed until that day comes that I find more answers.

The main way I have dealt with trying to get myself to adjust to my diagnosis until recently has been to….not deal with it at all.  Up until the past month or so,  I’ve just been ignoring my worsening symptoms and the cries that my body has made for me to make a change. I knew that I could make it through this year, I could pass my difficult classes, I could balance school and theatre and my health. I mean, I COULD do all those things, but I’d sacrifice happiness, and any chance of better health. I have a  great boyfriend, great friends,  a great family, a great artistic outlet. I’m learning to drive, I worked for a while, I’m looking into college…but for things I’ve been excited about since elementary school, I sure wasn’t having any fun. I was torturing myself- trying to live life as if I’m not sick.

Thus, the changes started. After closing our all school musical that I had the privilege of assistant stage managing, the theatre department at my school goes into rehearsal time for our competition play of the year. I was also supposed to be stage managing this show, and I was so excited and ready for diving into more of this amazing position that I have discovered a passion for. But, two weeks ago I stepped down from stage managing this show. I loved every minute of the rehearsals I attended, but I was falling behind on my school work, and I was not taking care of my health, or really myself in general.This  change, although I’m still not happy that it had to happen, has really helped me a lot. I wish that I could be continuing like normal, but I know this was the best decision.

After this, my parents met with my assistant principal at my school to discuss my options as a student with chronic illnesses. Unfortunately, there aren’t many. I can really only control my course load; I can’t take half days of school or get any major extensions on assignments in my harder classes. My parents and I re-evaluated after this meeting, and decided that not only do I need to free up time to do homework, I needed to free up time to work on my health; to delve into taking care of myself and doing everything that I can to make it easier to get through the day. We spoke to my assistant principal again, as well as my counselor, and have changed my schedule to take me out of AP physics, and to put me into Pre-AP, just a level change to save me  some stress. Although not totally thrilled with this change either, I have noticed a significant difference in how I’ve been feeling physically, as well as mentally.

Having time to keep my room clean, to lay around and watch shows, to invest into my relationships, to really be present and enjoying my life as I’m experiencing it is just not worth sacrificing for a class credit on my transcript or a play on my resume. I’m proud of myself for finally having these important realizations about what I need, and  for taking action to make the changes to meet my individual needs. Changes won’t stop here, and hopefully with this extra time I’ll be able to update more on things going on in my life! Thanks so much for reading!

Staying strong, Spoonie Cutie.

 

The Diagnosis

Hi there! This is my first time writing any sort of blog post in general, and definitely my first time putting out something this long & detailed about my health. I feel it is important to let everyone around me in on this part of my life because of how much it has affected me, and how it is literally constantly on my mind. It has made such a change and such a huge impact on my life, and I hope to shed some light on the very confusing story that is my health.

I started experiencing pretty major fatigue during the summer of 2015. This was the first of many symptoms, but was the most major shift in my health, and still is. I am an extremely motivated student and love a challenge, I’ve always kept all A’s and have taken Pre-AP and AP classes. Once the school year started, the fatigue started to take it’s toll, and was placed at the forefront of my mind. The beginning of coming to terms with this mysterious fatigue was an extremely frustrating process. I didn’t have a diagnosis, and my PCP didn’t seem too concerned at first, so I just put it as “I’m a high school student and high school students are always tired” in my mind and continued to push myself like usual.

The next symptom I encountered was unusual shortness of breath. I had a class on the third floor, which usually wasn’t a problem- I was 15 and in shape-but walking up the stairs and keeping up with my friends suddenly became a major chore. This led to my doctor exploring an asthma diagnosis, despite me not having a tight chest or “attacks” of my shortness of breath. The lack of attacks combined with a good looking lung function test pushed this diagnosis to be thrown out, and I was sent back to the drawing board. My doctor then played with me having Walking Pneumonia, a much more temporary problem, but after being treated for it for a month with no result, that too was thrown out.

It took over 6 months of bouncing around from my PCP to various specialists (Pulmonologist, Cardiologist, Hematologist) to finally land on a diagnosis. I am very lucky to have gotten a diagnosis in this amount of time, though. My mom had been searching for an answer to her (scarily similar) health issues for 10 years previously to mine, motivated by her constant fatigue, and unfortunately has been experiencing symptoms for these syndromes dating back to middle school. Her mom experiences similar symptoms as well, but has gone her whole life without a diagnosis. My sister (age 9) is lucky because she has already started with a diagnosis before her symptoms really start to hit hard, so hopefully through life management she will have even better quality of life.  My hematologist was very helpful, and within about the first 5 minutes of my first appointment, he had diagnosed me and was convinced my mom had the same issues I did, giving us both the answers we had been searching for.

The first of the diagnoses I have been given is Postural Orthostatic Tachycardia Syndrome, an autonomic disorder that causes my heart to freak out any time I decide to move, basically. The transition from laying down to sitting, and from sitting to standing is extremely hard on my body. My heart has to work hard constantly; my hematologist compared the activity of my heart to a person who ran a marathon…just, you know, everyday. This started explaining the fatigue I had previously experienced, and the reason why I got out of breath easily. Another fun trick with POTS is low blood pressure. I can’t stand for extended periods of time without starting to black out, and sometimes it’s so bad I can’t even sit up without feeling lightheaded. Although I had brushed it off previously, this too I was very familiar with. You know when you stand up too fast and you kind of black out for a second? It’s that feeling. Just, every time I move. Or stand still for too long. Or whenever my body feels like killing me a little.

The next diagnosis is Ehlers-Danlos Syndrome Type III, the hyper-mobility type. I always explain this part of things to people like this: All those kids in school who you thought were really cool because they were double jointed? I’m actually cooler than all of them because I’m basically double jointed in EVERY SINGLE ONE OF MY JOINTS. Being this cool comes with a price unfortunately, and that price is extremely debilitating pain. Since I was little I had experienced what my doctors had told me was “growing pains”, which to be fair, I’m sure some of it was, just not now that I’m 17 and have been the same height for the past four years. My joints ache pretty much constantly, I bruise extremely easily because my skin is bendy (stretchy) as well (Take that kid-who-could-dislocate-his-thumb-in-some-strange-way-in-middle-school), and various joints shift and cause even more pain. I’m just full of fun.

As of right now, I go to school full time. I’m in two AP classes, I’m learning to drive, I’m in the varsity theatre class at my school and stay after school until 5:30 or later everyday, and I feel pretty much like I’m dying. I’ve made it through a lot and am still looking for treatment from new doctors, something to give me relief each day. I’ll continue updating with new diagnoses if I begin to add any more fun ones to my collection, and I’ll update with my school habits and treatment as well.

Hope this helped you understand a little more about what the heck is going on with my health!

Staying strong, Spoonie Cutie.

*(For why I call myself “Spoonie Cutie”, visit my “About” Page!)*