I was diagnosed with POTS and Chronic Fatigue Syndrome October 2010.
The beginning, before being diagnosed, at the end of the school year:
In March 2010, I began getting symptoms of chronic fatigue, restless and un-refreshing sleep, no energy, sore throats, and headaches. After I missed a week of school I went to a place similar to patient first and was diagnosed with a Sinus Infection. This wasn't big news to me, I'd been getting sinus infections between January and March for years. I got a prescription and assumed I would be back in school the next week. After a few days I was feeling better, with much more energy. I returned to school the following Monday with very mild symptoms. After the day was over I came home and immediately went to sleep, and when I woke up I felt horrible. I pushed myself to go Tuesday, not wanting to miss more school. When I came home Tuesday afternoon I felt like I had just run 100 miles. I had no energy and all I wanted to do was sleep but I had piles of homework for the next day and to make up from the week I'd missed. I tried to attempt the work but couldn't and I went straight to bed. I woke up Wednesday morning and couldn't even move, it felt like a mass of pressure was building up on my body, so I didn't go to school.
After another week and half passed of not going to school, my parents became very worried. We made several appointments with different doctors trying to find out what we could do. My Primary Care doctor thought it might be my sinuses, since I had frequent sinus infections, and recommended me to go to an ENT Specialist.
Soon enough the school was calling wondering where I had been. My mom talked to my guidance counselor explaining our situation. She said she understood and would try to gather up all of my work ,and send it home with my younger brother, so I wouldn't be far behind when I returned to school.
But after several more weeks passed, I wasn't even sure when I would be going back. I was trying to get to school as much as possible, but that was only about 1-2 days a week. I felt like I couldn't concentrate in class and began experiencing painful headaches and exhaustion.
This continued until May. By then I was so far behind, I was terrified I was going to have to repeat my grade. I became increasingly stressed and that only added to my problems.
My mom wasn't settling with not getting any answers from doctors and the school. We were at a dead end. My mom spent countless hours calling doctors, specialists, and teachers to see if they had any information. One day at work she was talking to her friend and was explaining what was going on with me and how we had no idea what was going on. I think it was fate she was telling this person that because her friends nephew had the same problems! She gave my mom information about specialists, and that to take care of him missing school he was put on Home teaching.
Home teaching is when a teacher will come to your home to teach you if you have an illness that doesn't allow you to attend school full time.
We were confused as to why the school had never given us this option. After missing 3 weeks of school, you should automatically get this, and it had been months, yet no one uttered a word about it.
Then we found out a student, in my school, had missed the entire previous school year, and passed because he was on Home teaching.
We became frustrated with the lack of help and support from the school. In late May we had a meeting at school, and my mom told them what she had found about Home teaching. They then gave us information, saying we needed to contact pupil services, who is in charge of home teaching.
My mom then contacted them, but since I had no diagnosis that would make me unable to go to school, I wasn't eligible.
To me, this had become a game for the school. Whether it really was, I'll never know. But I felt like we were against a wall, with no one backing us up.
So to get my my home teaching and to prevent me getting all E's on my last quarter report card, we discussed our options with the doctor. She finally gave a diagnoses of depression which let me get home teaching.
Summer 2010 (before being Diagnosed)
I spent most of my summer having teachers come to my house every few days for 3-4 hours to teach me what I had missed. It wasn't fun, but I didn't want the bad marks to effect me when I was applying for colleges. I had little time to do thing with my friends during the days, so I tried to keep my schedule as packed as possible in the evening and on weekends.
I finished my courses at the end of July. I only had one month left of summer. My family took a couple vacations together and some with friends in August since we couldn't when I had my teachers. My mom noticed me having a little bit more energy, not much, but it was an improvement. The improvement didn't stop either, I was feeling good for the first time in a while. I was ready to start my Junior year fresh, with that slight speed bump behind me.
First two days of school went by okay, but I wasn't used to getting up at 6 AM every morning. So I was taking naps as soon as I got home. It didn't worry anyone because it was an adjustment having to wake up that early. But when Wednesday came, the feelings from March had returned. I began missing more weeks of school at a time. I felt so confused and helpless.
Again, My mom did everything she could to figure out what we could do. I had gotten a CAT scan of my sinuses and everything came back better than normal, I was sent out for blood tests that also came back normal. We didn't know what else to do.
Soon enough we realized I had to begin Home teaching again so I wouldn't get behind. My mom called my home teacher from the summer, who gave her information she had found on a doctor that specialized with people that had similar symptoms to me. The people were diagnosed with P.O.T.S, I had heard that term before, but wasn't sure what it was. After researching it my symptoms were right on point with those of P.O.T.S. My mom immediately called the doctor and scheduled me an appointment.
Shedding light on what was wrong.
The day of my appointment came and I was ready to know exactly what I was facing. After four hours with the Doctor, he diagnosed me with Postural Orthostatic Tachycardia syndrome. I breathed in what felt like my first breath in ages. I had a name for what was going on.
We began a treatment plan and I began to improve greatly, although I still wasn't able to go to school.
Present-
I am now 21-years-old (as of November 2015). It has been over 5 years since my diagnoses- wow! A lot has gone on, but I am very happy to say that most of my symptoms have diminished. I'm not completely out of the woods, as I do have relapses and bad days, but overall my health has mostly been restored. Most of the symptoms that have stayed with me are chronic fatigue and sleep issues, as well as bouts of tachycardia and hypotension.
While I know this is not the case for everyone, I hope to continue to shed light on P.O.T.S as well as Chronic Fatigue so others can understand what many of us face on a daily basis.
The fight continues but I believe we are all warriors ready to win.
