teacher helping female student at her desk

What Teachers Should Know About Their Students With Fatigue

Dear teacher of a student with fatigue,

First of all, I’d like to tell you a little bit about what fatigue feels like, based on my own experience. To me, it feels like staying up for three days straight, even if I’ve gotten 12 hours of sleep. Often my head is fuzzy and I’m unable to focus. No amount of sleep makes much of an impact.

I can’t speak for your student, but I can speak from my experience as a student and what my teachers did – and what I wish they’d done – to help me. I had many amazing teachers who helped me in any way they could, but I also had a few who made things very hard for me. I hope you’ll be the former.

The best teachers I had were the ones who were sympathetic and willing to work with me, even if they didn’t fully understand my fatigue. I knew I could come to them if I wasn’t able to complete an assignment on time and we could talk about it and come up with a solution together. When I had to miss class, which I hated doing but it happened often, I really appreciated the teachers who helped me make up the lessons I’d missed, even if it was just pointing me to the right pages in the textbook instead of leaving me to figure it out alone. The “brain fog” that comes with fatigue can be debilitating and it’s really nice to have help sometimes. I was lucky in my school career to have so many great teachers; they’ve all left their marks on me and made me a better person.

Unfortunately, I also had a few teachers who made going to class with fatigue harder than normal. I wish I could have explained to them what it felt like, but I don’t know that it would have changed anything. I hope maybe I can help another teacher avoid their mistakes.

Making accommodations for your student with fatigue is vital to their success, and might be the law, depending on how debilitating their fatigue is (504 and/or IEP). If you don’t know what you can do to accommodate fatigue, talk to the student or their parents. They’re the ones who know best how you can help them. If their suggestions don’t work for you, please keep offering suggestions until something works for everyone. It’s not OK to leave a child feeling like they can’t succeed in your class because of something they can’t control.

Keep in mind that a student with fatigue may look “healthy,” but their body and brain are not functioning like other students’. Because fatigue is seen as an “invisible illness,” it can lead people to question whether someone is really sick or not. No matter what your personal thoughts or feelings are, please respect your student. They don’t need an adult in their life questioning their illness when they’re probably doing that themselves and possibly dealing with other kids doing the same thing.

The best advice I can give to a teacher of a student with fatigue is to listen to what they need. Maybe they need to be reminded that their health comes first. Maybe they need to know that someone believes what they’re feeling is real. Maybe they just need a small smile in the hallway between classes to get them through the day.

Thank you for listening to me, and I hope you’re able to take something away from this. School should be a safe, friendly environment for everyone, including students with fatigue.

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Why I Took Photos of Myself When I Felt Terrible

two photos of girl side by side

On the left, my blood pressure has just bottomed out at a dangerously low 58/29. I was recovering from fainting and my whole body was tingling and numb. I was also struggling with full body tremors and full body flushing.

On the right, I was sitting on the floor due to a HR spiking to 192, and sitting brought it to 137, I was pre-syncope and my blood pressure was 142/112.

“If you were feeling so horrible, why did you take a picture of yourself?”

This is why. Not all illnesses are visible. This is what my daily struggle with dysautonomia/POTS/Ehlers-Danlos syndrome looks like. (These pictures weren’t taken on the same day.)

I never know what the next moment is going to be like. Am I going to faint when I sit up or stand up? Am I going to have a resting heart rate of 72 or 200? Am I going to be able to eat? Are my joints going to hurt so bad that the pain is so unbearable that I throw up? Is my blood pressure going to bottom out or spike too high?

The unpredictability of this disease has taken a huge toll on every aspect of my life and I can’t even remember what it’s like to not be sick. There is no cure, so I don’t know if I will ever know what it means to “feel good” again.

I do know that I’ve learned to appreciate every small accomplishment. Every hour I don’t faint is a blessing. Every night that I can go to sleep without being in excruciating pain is a victory. Every meal I eat without pain and intense nausea is a celebration.

This illness has stolen so much away from me, but it has also shown me that even the smallest victories can feel like the biggest ones.

“You can be in pain, yet you can see beauty, and that is what makes life so incredible.” — Claire Wineland

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female high school student leaning on a table and gazing out a window next to a large stack of books

The Hardest Parts of Being a High School Senior With POTS

Most people my age are waking up every day at 6:30 a.m. to get ready to go to school. Sadly, I am not most people. Instead, I am stuck inside my house sitting on a computer while doing online school. My school is now at my home. Senior year is supposed to be the best year of high school, but I won’t be able to experience it like I always wished. I’m going to miss out on homecoming, sports events, Winterfest, possibly prom and walking with my class on graduation day. It’s very depressing to see on social media that all my friends are thriving and living the perfect lives without any worries. It hurts knowing they have all forgotten about me since I can’t join them during our final year together.

The worst part about missing senior year is that I miss out on my social life. I used to have a lot of friends and now I have three. I try and focus on schoolwork and push to be done with classes. I truly can’t wait until I am in college because then I can be myself and not have to worry about all the little things most teenagers worry about in high school. Whether it has to do with sports or being homecoming queen, most are sucked into their own lives. I can admit I was selfish at some times during my high school career, but I’ve changed since I became ill. I feel like I have been down in the dumps since senior year started. I never in my life would have guessed I would be in this position right now. I wish I could’ve prevented my downhill spiral from my POTS (postural orthostatic tachycardia syndrome). Instead, here I am, sitting on my computer daily.

Even during my senior year, my family’s life has drastically changed. My mother has to constantly be near me since I worry I might pass out and not be able to move. These struggles have made my mother’s relationship with her husband very different. I feel as if I have become an inconvenience to all of my family members while I stay glued to the couch doing homework. It has become extremely hard to function like I used to. I can no longer go out with friends after school and be able to participate in school events.

The worst part is how I was treated while I tried to get help with accommodations to make my senior year easier. Sadly, I was instead accused of faking being pre-syncope. I was also accused of skipping school the day after my dog had been put down. I had spoken to my principal and instead, she made my life hell. She didn’t do research on what exactly POTS is. She didn’t inform her staff that they had a student who typically passes out every day. I felt disgusted and confused so I transferred to alternative education. It is in the same district so I can still go to prom (thank gosh). The director/principal of the school was the nicest person I had met. He showed me how online school works and then explained how my circumstances would be OK since I could be at home instead of in school. He knew exactly what POTS was and even had accommodations ready for me if I planned on actually going to school.

I have noticed I have become a whole new person during my senior year. My family says I talk as if I am very feisty and irritated. Deep down the root of my emotions is frustration and anger. I feel bad that I allow myself to let it out on family members, but it isn’t my intention to talk this way. I used to be loud and obnoxious and laugh too much, to the point where I couldn’t breathe. I don’t remember the last time I actually laughed at something like I used to. I hardly smile unless it’s for pictures. Senior year is no longer senior year for me. It all feels like a bad dream I just need to wake up from. The real question is: will I ever wake up from this nightmare?

It seems like my biggest struggle of all is truly only having my mother to support me and remind me that things will get better. Where did my so-called “friends” go when I needed them the most? Nobody should have to go through their senior year alone like I am. Then again, not many are chronically ill and lose all their friends. No matter how hard I tried to contact my “friends,” nobody would visit me. None of them took an hour out of their lives to come and check on me or at least send me a text asking how I’m doing. It seems I am forced to become independent and to learn how to be alone. I mainly focus on homework, but I also wish I could have a friend to lean on.

The hardest struggle for me during senior year is not having a boyfriend. My last boyfriend hardly understood what I was going through and seemed to be caught up in his own life. People like me who are chronically ill can’t be with someone who doesn’t understand what we go through. He didn’t believe I was sick when I was fighting a rare infection and he also didn’t care when I was stuck in bed at home. The only guy I would want to be with is someone who helps me when I need it and loves me no matter what. It’s hard seeing happy couples on social media who don’t seem to have any issues. I don’t necessarily need a man in my life but I would definitely benefit from the extra support and love.

At the end of the day, I will still graduate and get my diploma and be able to move on with my life. I am able to focus on my health and work on homework on my comfy couch at home. Since I’ve been going to school online, I haven’t passed out, and that has been the best thing that has happened to me.

I know there are other chronically ill seniors out there, and I just want you all to know that you must keep your heads high. Don’t let others bring you down from succeeding. Never let someone’s actions destroy how you live your life. Be who you choose to be and let that be your fuel to succeed and do great things.

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presents wrapped in gold paper

7 Things to Put on Your Holiday Wish List If You're New to POTS

Last Christmas my postural orthostatic tachycardia syndrome (POTS) was at its worst. (Not that I even knew what POTS was at that point, let alone that I had it.) I knew I had something wrong with me — I was so dizzy all the time and was so weak, I couldn’t even walk upstairs without getting out of breath and my heart rate would jump up to crazy levels every time I moved. Once I got diagnosed in March, it all began to make sense and over the last nine months I have learned about all the little things I can do to help improve my condition and lessen the likelihood of major flare-ups. These are some of the best things I own that help me on a day-to-day basis that any new POTSies should have on their Christmas list. The holidays are a difficult time to be managing any chronic illness hopefully these will make the new year a little easier. I wish I’d had many of them earlier:

1. A shower stool

My mum got me this for my 21st birthday and as she put on the tag it was “a very strange shower-stool 21st birthday present” but it was probably the best and most useful present I got. It was on my list and it was on there for a reason and it has really helped me. POTS symptoms can be made worse by heat, standing and having your hands above your head. This makes showers really hard work. As well as palpitations, I get awful blood pooling in my feet which is really uncomfortable, my feet are often purple and red blotches can rise all the way up my legs. Having a shower stool takes away the standing element and although I still get a little pooling in my feet it has really helped me shower more confidently and independently.

2. A hairdryer stand

This was one of the first things I bought to help counteract my POTS, mainly because I was sick of my boyfriend’s awful hairdressing skills (bless him, he tried.). My hair is long and thick and takes ages to dry at the best of times, so this simple gadget has helped immensely. Again, the mixture of heat and holding something heavy above your head can make you really symptomatic; when I was at my worst it was literally impossible so I bought a stand to hold my hair dryer so I can dry it hands-free and it makes life so much easier and less symptomatic. I no longer dread washing my hair.

3. Handbag/pocket sized salt

My stepdad got me an amazing little salt pot that fits neatly in the pocket of my handbag when I was first diagnosed and it’s great if you need to add a little salt to your food while you’re out and about and there’s none available. It may not be suitable for everyone with POTS to add salt to their diet, so speak to your specialist about it.

4. Blood pressure monitor

Blood pressure medication can be key to helping with some people’s POTS symptoms, but after getting it prescribed, many people are left to titrate it up on their own. If you have a blood pressure monitor it can give you a good idea of what is normal for you and you can tell if something is helping/changing or not. Also many people’s blood pressure readings aren’t accurate when they see a doctor, as stress or anxiety can boost blood pressure. If you can get more accurate readings at home and directly relate them to symptoms, you can show these to your doctor and they can have a better idea of what it is like day-to-day. In my experience, blood pressure monitors also have much more accurate heart rate functions than smart phone apps or fitness watches.

5. A good water bottle with a sports cap

Hydration is key when it comes to POTS. It’s the closest I get to feeling like a mermaid
with the amount of water I get through. When I’m feeling at my worst, a bottle of water is a big rescue. Normally a glass or open-top bottle is fine, but when I can’t do anything but lie flat, the sports cap is really important so I can stay hydrated when I just can’t get up.

6. Compression sock or tights

These may not be the most comfortable and they are really difficult to get on an off especially if, like me, you also have EDS. But they do help improve the blood flow in your legs and can improve your symptoms. They’re also a good extra layer on freezing cold days.

7. A handheld battery-powered fan

Now I know this isn’t going to help right now because it’s already cold outside but you’ll thank me when the summer comes around again. This summer I had finally got the balance of my medication right but then the heat hit and I was pushed two steps back. So be prepared and have it early to survive summer 2017!

Happy Holidays everyone and here’s to a happy, as healthy as possible, New Year 2017!

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

Follow this journey on Invisibl3Girl.

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Woman sitting in window

Why I Had Mixed Feelings After I Was Diagnosed With POTS

“Your test results show you have postural orthostatic tachycardia syndrome (POTS), which I think was your suspicion. Well, you definitely have POTS, and I really think we can help you.”

I was shocked.

I sat in the hospital room with a smile on my face and tears in my eyes. Did she really just say what I think she did?

Oh, how I wish I had recorded that moment. I would have shown it to all the doctors who had told me before it was all in my head and to all the people who said, “But you’re too young to be in so much pain.”

I couldn’t stop smiling after the doctor left the room. I sent a text to my amazing boyfriend and my gorgeous best friend. “I got the diagnosis! I’m going to cry today. I just know it.”

I called my mom who was in the waiting room with my dad and little sister, and then I proceeded to tell the rest of my siblings the news. Everyone was so happy that we finally had a huge piece of this puzzle figured out.

But after a while, the initial rush of it all started to wear off a bit.

14 years.

That’s how long I have waited for this diagnosis. Next month, I’ll turn 20. That means I can take my healthy years, multiply them by two and it will still be less than the number of years I have been sick.

When I was around the age of 6, I got mono for the first time. Headaches were soon to follow. When I turned 8, I got mono again. By the age of 10, I had my first MRI because of my horrible headaches. That was the day I was diagnosed with migraines, which was only the beginning. I’ve been developing symptoms ever since, so many that I have enough to fill a whole page — printed on both sides.

It was hard growing up as the sick kid. It’s awful how the comments people make can affect you as a young child. I remember most of these comments vividly. The first was after church on Sunday morning. We were waiting inside our 15-passenger van outside of the Piggly Wiggly, while Mom and Dad got some groceries. Everyone seemed to be talking and laughing so loudly. I was curled up on one of the seats and on the verge of tears when I asked everyone, “Could you quiet down? I have a migraine.” One of my sisters (who I dearly love and know she would never say anything like this now) replied, “You don’t have a migraine. Only old people get those. You’re just trying to get attention.”

That was just the first in a countless number of such comments: “You just don’t want to play with us because you’re lazy,” “You’re just saying that it hurts because you don’t want to help” and “Are you sure she isn’t just making it up?”

I was the 10-year-old with dark circles under her eyes who tried so hard to keep up with her friends and siblings and often couldn’t. I can’t count how many times I felt guilty for saying no to something I couldn’t do or the nights I cried feeling like no one believed me.

This is how I mark my memories. I measure years by allergy shots, when I threw up anything I ate with dairy in it (so in my house, pretty much every meal), when I was told I had hypoglycemia, the year I lost almost 40 pounds and became malnourished because of all the things I cut out of my diet (eating at camp was a nightmare), the first time I passed out, the time I had to quit my first non-camp related job due to brain inflammation, the spring I had to drop out of college (after only a month) because of a systemic candida infection or deciding this year to give up my American Red Cross Life Guard certification, which was a major part of my identity since I was little.

I tried not to let these thoughts take away from the moment of my diagnosis. I wanted to cherish it as best I could and at least hold onto that initial happy feeling until I talked to my family in the waiting room.

The doctor came back in and told me what the treatment plan was, and then she sent me off to the lab for some blood work.

I sent a text to mom telling her where I was, so she could come find me. Finally, the face of someone I love! I got a great big hug and explained what the doctor had said. I had my blood drawn by the quickest nurse in the South (seriously, Mom didn’t even see her switch the vials!), and then we were off to get dad and my little sister, Katrina.

It was then that I realized I wasn’t the only one with mixed feelings, as my dad said, “So I guess you got good news and bad news today.”

He was right. His little girl would more than likely never get better.

You see, POTS has no cure. It affects everyone differently. Some are able to manage it well with lifestyle changes and the help of good doctors, while others may have to use wheelchairs or are bed-bound. Many people, like myself, go back and forth between these situations.

Few people have even heard of POTS. I didn’t even know about it until last year, and I’ve had it for most of my life! The lack of knowledge can make life so hard for people with POTS. A heartbreaking amount of people walk out on us because they can’t handle it.

So thank you for sticking with me through this. I hope to write many more posts about the effect this syndrome has had and will have on my life and the lives of so many others.

Follow this journey on Free Spirit Dreaming.

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people sitting in a circle having a discussion

How My Dysautonomia Support Group Helps Me Feel Less Alone

I was officially diagnosed this past year with POTS, postural orthostatic tachycardia syndrome. It is a form of dysautonomia. Dysautonomia is a malfunction of the autonomic nervous system. It affects the heart rate, blood pressure, temperature, digestion and other functions. I was diagnosed with POTS by taking a tilt table test where my heart rate increased more than 30 beats per minute. POTS patients experience excessive increase in heart rate upon standing. There are a wide variety of debilitating symptoms. I experience dizziness, fatigue, lightheadedness, nausea, sensitivity to noise and light, headaches and brain fog (cognitive impairment).

I felt so alone with my chronic illness. I’m grateful that I have a very supportive husband and a few people who truly understood what I was going through, including my twin sister who also has POTS, but the majority of people around me didn’t. I have gotten many of the usual comments a person with an invisible illness gets: “You don’t look sick,” “It’s all in your head,” “It’s anxiety or depression,” “You look better” or “If you take this or that you will be cured.” Or they even downplay my illness as to suggest it is not that bad. People also get upset when I have to cancel, or don’t believe me when I explain why. I try and educate people about dysautonomia and how it impacts me and my life. I know people have good intentions but they don’t fully understand.

I felt alone until I joined a support group with others who have dysautonomia. I am a part of Dysautonomia Support Network. The people in the group understand how dysautonomia symptoms are debilitating and affect your daily life. They understand you have to grieve the loss of your old life and accept the new one. They understand wanting to do more but not being able to due to your health. They understand the severity. They understand the frustrations you go through because they are living with it themselves. I felt I belonged. I was so glad to be understood and believed.

I don’t feel alone anymore, as people in the support group are there to encourage one another, relate and share common experiences. They also share ideas, resources and coping strategies. It makes you feel empowered and gives you a sense of community. It’s so positive and brings hope. You don’t have to explain to them what dysautonomia or POTS are. Being in the support group gives me so much strength and joy.

I am inspired by those in my support group, seeing them fight and give back to the community. Seeing them give of themselves even when they are having a rough day. It’s encouraging seeing the victories they have achieved despite having dysautonomia. I would encourage all who have a chronic illness to join a support group, whether it’s online, in person or both. Yes, I still have a chronic illness, but I don’t feel alone anymore.

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