Today, April 6, 2018, is my three year diaversary--or diagnosis anniversary of POTs. Three years ago, in 2015, I was diagnosed with Postural Orthostatic Tachycardia Syndrome or POTs. It has been a long and stressful journey. I still struggle everyday with multiple symptoms. And just because I have been diagnosed for three years, doesn’t mean I have only been living with it for that long. I have probably been living with POTs since about 2012, or since I was fifteen-years-old. That is around the time I started to notice something was wrong. Ever since I almost passed out at Spring Play practice in the Spring of 2015--I knew something else was going on other than just low blood sugar. But I kept quiet. As a young female, I knew no one would believe me other than my persistent mother. Plus I was in some denial and distracted by the death of my grandfather.
April has never been my month.
I have been on multiple medications and have worn four heart monitors--still currently wearing one--it’s in my chest. (check out my last blog post) I have been to the emergency room about six times--all POTs related--and I have published a few posts on some of those visits.
In fact, a few days after I was diagnosed with POTs is when I started this blog. So, it’s this blogs three year anniversary! I can’t believe that either. That I have been publishing about POTs and other illnesses for the last three years--trying to spread awareness and my story with others.
For me, my diagnosis was pretty freeing for me in many ways. I had finally had a name for everything that I was experiencing. I had a answer, FINALLY! I had ways to make some of my symptoms better. I had ways to treat my symptoms. I had medication to help my symptoms. I had all these methods to help me feel better in general. And some help and some don’t. I know what to do if I am really feeling awful, like if I am feeling like I will never get better--I go to the emergency room to get IV fluids and rest.
After I was diagnosed, I learned that I wasn’t the only person that had these symptoms and felt terrible all the time. There were other people--other women--that all understood what I was going through because they had gone through it or were going through it with me. I found this entire new community on social media support groups. It was insanely awesome. Something I never had even thought of before. I had it. If I was ever concerned about something or had questions I would post about it on about five different support groups sites and I would get answers about what had worked for other people and what hadn’t.
I was in my second semester of college when I was diagnosed. I didn’t have a lot of friends at the time and I was feeling super alone. That is when I decided to start a support group on campus for students that lived with disabilities. By the next Fall, we had our group formed and had a hand full of students that had joined. Students come and go as they please. We have a few “regulars,” but the support group has really helped me and I have only heard good things from other students on campus. That group is something I will always cherish and also make sure it continues at Hamline. This means it is also the third year of the group. I ran it for two years and this is the first year it has gone on without me. I know I left it with great student leaders--I know because they are my friends. They are kind and truly care for other students that have disabilities or have any social stigma against them. I was completely fine leaving them in charge. And in fact, I have even gone to an event or two that they have put on for the group.
My advice for those who have been recently diagnosed with any type of illness--whether it be physical, mental or a learning disability--get help, find support, see a therapist that works for you. Finding help and support from a doctor, therapist, counselor, friend or family member and finding support through online or in-person support groups really does help. Talking to people that go through similar things as you really does help. It makes you feel less alone. Also, talking in general helps. If you talk to your family and friends about what’s going on--they can get a better idea about what you have to deal with on a daily basis. And I know that misunderstanding can be difficult. I have great friends and some family that ask me questions about all my illnesses because they want to understand me and my experiences and they want to help me. That is also helpful--for the people who have loved ones who live with illnesses. Just find ways to cope with this new normal that you are trying to maintain. I know it can be extremely difficult at first but it does get better. It may feel like a roller coaster and that’s because it is. That is why you have to line up your support system and support people. So, you always have someone to fall back on and you always have a safe place to be. Everyone needs someone. So find your someone--that person(s) you can really count on. I am lucky to say that I have a few people and places to go that really do help me feel better.
Sometimes I need to shut myself out from the world and people and places. But I still have to work. I still have to visit family and friends--for their sake. But I can’t always be stuck in my apartment no matter how much I want to sometimes. It is ok to do that every once and awhile but I know that if I keep myself cooped up in my apartment all the time that it will make my depression and anxiety worse. As well as, my POTs. I need fresh air. I need some exercise. I need to be around people sometimes, to feel better. And other times I can’t be around anybody and that’s fine to. Find your balance.
It will be another interesting year living with POTs. I can only wonder what my illness has in store for me. Maybe, I will have more flare-ups, maybe I will visit the ER. Maybe, I won’t. Whatever the case may be, I know that I will be ok because of my support system. Because of my family and friends.
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