So before i post anything else, i thought it would be a good idea to give everyone a bit of a background on me, my life, and POTS. I wrote this particular entry in my LJ a couple years ago, but it does a pretty good job of overviewing what my experience with POTS has been like, so I figured I would post it here!
Basically until I was 13 years old I lived a completely normal, and happy life. I went to school, was in girl guides, was forced to go through piano lessons but eventually got out of them by throwing tantrums, and most of all, I was healthy. I entered grade 8 healthy too. I missed a few days of school because of a cold or flu, but nothing out of the ordinary. When winter came along, i found myself feeling sick quite often. Mostly nausea. I found i got it a lot in gym class, and especially when i had gym in the morning. At that point i didn't really think much of it, and i passed it off as an annoyance that would eventually disappear just as oddly as it came. But it stuck around for a month or two, and it seemed to be getting worse. By February I was actually missing a few days of school a month because of it.
On Friday February 27th, 2004 i had gone to school and had experienced the nausea a few times. I didn't go home though, and my friend mandi came for a sleepover that night. nothing out of the ordinary happened, we watched TV, went on the computer, basically just hung out. After a while we got tired and went to bed.
At around 3am I woke up to mandi coughing. Suddenly i was extremely nauseous, and i thought i was going to be sick. I finally mustered up the strength to go tell my mom, and maybe get some medicine. My mom was in my brother's room sleeping for some reason, i can't remember why but i went into the room and immediately lay down beside her because i couldn't stand any longer. I think i was crying, most likely was because if you know me, you know i hate throwing up. I told her what was going on, although she was half asleep so I'm not sure how much she actually processed. She said to just try to go back to sleep, and I did. Try i mean. But i was so sick, I just couldn't. I lay there beside her for what seemed like hours, and then I finally dosed off. I woke up, probably only a couple hours later and saw that my mom was gone. I lay there for a while, and was still extremely nauseous. I got up and went downstairs after a bit, and i lay on the couch. My mom tried to get me to eat some crackers, but just looking at them made my stomach turn. Mandi came downstairs a little while later and I briefly told her what had happened. We both figured it was a bad stomach flu, and mandi grabbed one of the crackers from the bowl my mom set in front of me and called her mom. She left a little while later, and i basically stayed on that couch for the rest of the weekend. On Monday my mom and brother were both sick, but not with what i had, a cold or something. My mom made a doctor's app. for me and Adam, and we went to it later that day. I got some blood work done, and an EKG (it monitors your heart rate to see if anything is wrong, I had to get this because the doctor said my heart rate was pretty high). After a few days we got the results and they came back normal. I still hadn't gone to school, and i was feeling basically the same.
I won't go into too much detail about the next 2 months, but basically for all of March and April i was home sick, and things were not improving much. I was having anxiety attacks because of the stress this was causing me, and all of the tests i had to go through, that ended up all showing the same thing. Which was nothing. I was written off as crazy by a lot of doctors, and people in general. And at times i thought maybe i was. I had been to the ER many times, once by ambulance, all with no luck.
On April 30th 2004 I went back to school for the first time. Not necessarily because i was feeling better, but because I was so sick of being sick, that i emotionally couldn't take it anymore. I had not gone anywhere, except for small walks for 2 months. I had basically been bed ridden, and it was horrible. I was around 5'3' and only 83 lbs. I was basically wasting away to nothing. I went to school that day, and was drowned in questions from everyone. Everyone wanted to know what happened, and frankly, i couldn’t tell them. I didn't know what was wrong with me; nobody knew what was wrong with me. And somehow saying "I was nauseous/dizzy." didn't seem like a sufficient excuse for missing 2 months of school. Throughout the day, and the week i went through tons of people asking me questions, and every time i would answer a little different from the time before to see if i could find an answer that came out right. I had no luck, so i gave up and stuck with "i was nauseous". That sent a lot of strange stares my way, along with more questions, but i was too tired of answering them, and i was physically exhausted too from being bed ridden for 2 months, to walking up and down stairs and sitting in class and doing work all day. I never got better, but I did start to feel better after having some activity. I was still missing tons of class because of my nausea and sometimes dizziness. But I managed to graduate the 8th grade, and attend my graduation.
I had an okay summer, I was able to do stuff like hang out with friends and so on, but the nausea and dizziness was still there, constantly, and refused too let up. It got worse with activity, and with junk food, but other than that it had no patterns, so it was impossible to predict when i was going to be sick.
In grade 9 i was starting at a completely new school, and i only new a few people who were going there. Me mandi and Mary were basically all in the same position, so we hung out together. I missed a lot of school in September and i felt horrible to leave. Mandi and Mary used to get so mad at me and tell me i should just stick it out, and i hated that, and I hated me for being a disappointment. By November i had to drop my classes because I was missing way too much. I applied for a home tutor, and in February I started doing a few courses with James P McClearen. By June i only had 4 credits, instead of 8, but it was better than nothing.
The summer of '05 was pretty good. I was still sick and it was constant. But by now I had learned to adapt to it, and accept it for the most part and try my best work around it as much as possible. I could go for walks and to the movies once in a while, I just couldn't do too much in 1 day or too much at a time. Meanwhile we were still seeing different doctors and trying to figure out what the hell was wrong with me. I had this one test booked called a "Tilt Table Test" where they strap you to a table and raise the table so it is almost 90 degrees and you stand there, not moving until you pass out basically. Not everyone would pass out obviously, most people can stand on there own without a problem for long enough period of time, but there is a small group of people, people with Dysautonomia, who can not.
Dysautonomia is basically a disorder of autonomic nervous system and it's ability to function. It is pretty rare, but it IS in fact a REAL condition, which is something that many of the people who suffer from Dysautonomia struggle to get across. This is because the people who have Dysautonomia often look perfectly fine and healthy. They do not have any disfigurements, most of the time they are not in a wheel chair, or hooked up to IV’s constantly, but that doesn’t mean they aren’t suffering. The form of Dysautonomia I was dignosed with is called Postural Orthostatic Tachycardia Syndrome, also known as POTS. It is a very complicated illness, and it's hard to explain briefly, but you can read more about it here: www.dinet.org
By the time fall rolled around I was determined to attempt school yet again…I did. And I made it to a few classes a day if i was lucky. I FINALLY got the Tilt Test done at the end of September, and you can read all about my experience in an older entry in my LJ.
It was a very horrible experience, but it gave me the answers I needed to go back to all the people who said it was all in my head and say “I told you so!”
I continued going to school after we found out that I had POTS, and we were beginning to try a few different meds, but the doctor warned us that there was no magic medication for this condition, and everyone who had it responded differently to different things. Some things made certain people better and others worse, and vice versa. Some people DID improved with medicine, but there was no CURE just things to help ease the discomfort. POTS is a very odd condition, and it can disappear just as randomly as it came sometimes. It is found mostly in teenage girls who are tall and thin (not still jealous now, are you!). A lot of people find it gets better as they get older, around their mid to late 20’s. Either way, it was a chronic illness that I would have to deal with now, and probably for quite some time.
By October, I wasn’t getting much response from the meds that I was on, and I was missing too much school, so the VP and my parents decided it would be best for me to start with the tutoring again, and take some online courses. I was upset and I was sad and I was mad at them and at myself for not being able to suck it up and push myself through it. But I accepted it, and by then I had learned that accepting was something I would have to do quite often, so I knew how to do it quite fast and quite well.
For the rest of high school I did all my courses online. Surprisingly, to me at least, i was able to finish in just one extra year (I had originally thought it would be 2 or 3). It was hard sometimes keeping up with work, but i did my best and when i had to, i dropped a course and took it up again the next year. All in all, it had it's ups and downs, but i managed and i graduated, and that's all that mattered to me!
I am currently doing my college courses online, and although I would much rather be at school I am grateful for what I have because I know that things could always be worse. I have bad days and good days and days in between. I have days where I pity myself and go through the “why me’s” and I have days where I want to give up. But all and all I am trying the best I can to live my life, and live it to the best of my ability without letting my illness take over. It is extremely hard to deal with a lot of the time, and my perspective on life has changed a lot in the past 5 years because of that. Before I got sick I was not nearly as empathetic when it came to other people’s situations. But now, after experiencing something that most people have never heard of, and can’t even begin to understand, I know that even the most ridiculous and unbelievable of situations, can happen and can be devastated to those who they are happening to. I now know that you can have your life turned upside-down in the blink of an eye, and you lose everything that you have taken for granted; only to find yourself wishing you had been more appreciative. I know that there ARE people in this world who have to suffer every single day, and who have to struggle just to do things that most people do without thinking twice. I know that life can be hard, and life can be mean and cruel and disappointing and rough, but in the end, it is still life, and you are still alive and living, and that, in itself, is something to be thankful for.
