So, you’ve done it again. Congratulations. You pulled the rug out from underneath me; and as I sit here crying about the latest development in my string of constant health issues I want you to understand that while you have surprised me yet again, no matter what, you will not win. This is my life and no matter how many times you throw me for a loop emotionally, mentally, and physically, you will not get the best of me. You will not win.
I think this all too often. Saying it to myself, but, honestly, also to my chronic illness, POTS. Sometimes it helps to say it out loud. To hear myself say that I need to keep fighting…
You see, while POTS has taken so much from me, it has also given me a few things. Surprised to hear me say that? I was too the first time the thought crossed my mind. In fact, I thought I was crazy. But, if I am truly honest with myself, the truth of the matter is that while POTS has wreaked havoc on my life and all the plans I had for it, it has also given me so much more.
It’s hard for people who haven’t dealt with chronic illness on a daily basis to understand that thought process. After all, what person in their right mind would say a chronic illness has given them things besides pain, heartache and bouts of depression. Personally, and I hate to say this, but this chronic illness has completely changed how I imagined I would be living my life and some of it is actually for the better.
You see, in the beginning, after I developed POTS and was given a name for it, I almost felt a sense of hope. After all, I had a name and an explanation for what was happening to me. A reason for why I felt so ill and why I couldn’t get out of bed too quickly, or stand too long, without passing out; and, while everyone has different stories of how they came to be where they are with their chronic illness, for me it wasn’t until a few years after my official diagnosis that I realized my life would never be normal. It would never be like I imagined or like anyone else’s my age. Just because I had a diagnosis didn’t mean I was going to get better. When I finally realized this fact, I also realized I had two choices, to lay down and let this illness get the best of me or to do what I needed to do to survive and live my life as best as possible. I refuse to let POTS win and to do that I need to recognize the ways it has help me improve myself, so I don’t constantly train my brain to hate myself every time something bad happens.
Having a chronic illness has helped me become more vocal and clear on what I need. Before I got sick, I didn’t speak up to say what I needed, I let people do what they want or had someone else say what needed to be said. Since developing POTS, I have learned to speak up. I have learned that I know what is best for my body, and my life, so I have learned how to tell nurses, doctors and anyone else, what I need, not only for my health issues, but for my life in general.
So, thank you POTS.
Yes, POTS is constantly throwing curveballs. My week is never a completely straight line. Nevertheless, when those curveballs do get thrown at me, I have a few great friends that are there to listen to me. Of those friends, one of them I met because we have something in common, she has POTS too. I know that when she texts me to say, “Hey. How are you?” I can be completely honest with her. I don’t have to sugarcoat how I have been doing because I know when she responds and says “I’m sorry I know what you mean.” She TRULY knows what I mean. After all, she is going through everything I am going through. Don’t get me wrong. I don’t want anyone to go through what I am going through. In fact, I would not wish this life on my worse enemy. However, it is nice to be able to talk to someone that knows EXACTLY what I am going through. Someone I can be truthful and honest with. And I strongly encourage anyone with a chronic illness, not just POTS, to reach out to other members of their online support group (and yes we are all a part of one) and make a friend with someone in the group. Having a friend who is gong through what you are going through is a great feeling and can provide you comfort on a whole other level. That being said, if you don’t feel comfortable reaching out to someone out of the blue, reach out to me. I could always use more friends.
So, thank you POTS.
I have been diagnosed with POTS for years; however, I wasn’t told about the Levine Protocol and how certain diets might help the symptoms until about three years ago when I switched doctors. Since being put on the protocol, I’m slowly gaining muscle back and I am eating healthier than I ever have thanks to all the random foods that I can no longer eat since it might exacerbate my symptoms. While it seems weird to say this because my body does not feel healthy at all, I pass out weekly, and I can’t even workout every week, my muscles and my diet are so much better. I actually can see muscles on my arms again.
So, thank you POTS.
POTS has also helped me find a career path I never knew I would be good at. I cannot hold a full time job so I have worked to find something I can do from home. For me, working from home has been a great solution. It’s the only way I can truly have any sort of job and still take care of myself. I definitely can’t support myself working from home, but I will keep trying to work as much as I possibly can. Due to the fact I can only have a job that allows me to work from home and set my own hours, I have discovered that my passion for writing can actually be a viable career path. I am now a content writer and while I can’t support myself, I can at least feel like I am doing something to contribute and feel a little independent and involved in my own life. More than I would like to admit, I am reliant on those around me for some help. But more than that, writing takes me away from everything I experience as a POTS person. The pain, the negative thoughts and the constant worry of what will go wrong next. Writing is my escape.
So, thank you POTS.
The most important thing my illness has given me is a relationship with my mom. That’s not to say I didn’t have a great relationship with her before my diagnosis. My mom and I have always been close; however, now my relationship with her is on a whole new level. She is MY person, my cheerleader, my shoulder to cry on, my best friend. She drops everything to help me, by sitting through doctor appointments on her days off, staying up with me when I am sick and even using vacation days to take me to doctors in other cities if necessary. When I was 27 I had to move back in with her. It was no longer safe for me to live on my own because I was passing out so frequently. I felt so pathetic. I mean I was 27 and having to move back in with my mom. But she made me feel less pathetic about it, and welcomed me back home with open arms. My relationship with my mother is what I am most thankful that POTS has given me. My bond with her is so much stronger than its ever been, I am not entirely sure what I would do without her. She is my rock and if I have be thankful for POTS at all, I will gladly send POTS a thank you note for the time and memories I get to spend with her, even if some of those memories are filled with images of hospitals, doctors offices, and lots of needles.
So, from the bottom of my heart, thank you POTS.
So yes, POTS can be a real pain in the butt. And NO I would not wish this on my worst enemy. However, if I have to be stuck with a chronic illness, I have decided it is time to make the best of things. I refuse to let POTS win. For me to beat POTS, I need to acknowledge that this is my life and while it is not the life I imagined for myself, and I am sure it is not the life my parents imagined for me, at least I still have a life and I am determined to make the most of it. To do that, I need to find the positive things in my life to help get me through my day-to-day activities and keep fighting and moving forward as much as I can. I won’t say it is easy, but I encourage everyone with POTS to do the same.
