Chronicle I: Lessons I Have Learned So Far from Chronic Illness

I moved across states with the dreams of working at a University. I had been trying to get into Higher Education for quite some time when I lived in my previous home state. Along with hopes of landing our ideal jobs, my husband and I also had our sights set on buying our first house where we would finally be able to plant our roots and eventually start a family.

The first two months here were hectic, but we settled in quite nicely. We loved the area we moved to and we were stoked to explore our new surroundings. In due time, I landed a job opportunity at a higher education institution and I felt like my hopes and dreams were finally starting to come true.

However, after two short months, something just wasn’t right. I woke up on a Saturday morning with terrible upper back pain. A day earlier, I had put together furniture and attributed the pain to most likely being a bad muscle pull. A few hours later, a migraine started. I took a Tylenol and went on with my day. That afternoon, my family from arrived, as they were visiting for a long weekend. I was so happy to see them, but I still didn’t feel quite like myself. I remember we went to dinner and I stared off into space for about five minutes just thinking about how bad the back pain felt. Fast forward to sitting in the movie theater about two hours later when my heart started to race, and I felt this rush come over me. I felt nauseous and was trying my best not to vomit. It felt difficult to breathe, my upper arms felt very heavy and the room was spinning. It felt like I just ran a mile at full speed and did some serious upper body weight-lifting, but I had been sitting down the entire time. The feeling of your heart pounding out of chest for no reason is enough to ignite anxiety. I got up from my seat once my heart rate seemed to calm down and was able to grab a bottle water. I didn’t say much to my husband or my family, only that I needed some fresh air.

What I thought was a fluke, a one-time occurrence, something I could brush off…quickly became the biggest nightmare of my life. Over the last nine months, I have been to the ER more than a handful of times, admitted into the hospital, I have seen two primary care doctors, three cardiologists, two hematologists, three endocrinologists, a gastroenterologist and a neurologist. The first primary care doctor wrote me off and told me it was all anxiety and psychological from the move. I have suffered from anxiety since my late teens. Anxiety is terrible and anxiety attacks are scary. This is not to minimize what anxiety sufferers go through; however, I knew what I was experiencing was not anxiety-related. It was clear to me that what I was experiencing was something else, but one that no doctor could figure out.

I have spent months listening to doctors and their opinions. I was told at the beginning of all this that I could possibly have Hodgkin’s Lymphoma, an adrenal tumor, Crohn’s Disease, a heart condition. I have been through various blood tests, imaging tests and taken all sorts of trial medications to no avail. They love to find abnormalities like my platelet count being elevated, problems with my ECGs, my heart rate going up to 160 beats per minute while I am sleeping, enlarged lymph nodes in my neck, Hashimoto’s Thyroiditis, vitamin deficiencies, but nothing concrete was said about what’s really happening inside my body.

Almost every day, it’s a challenge to get out of bed in the morning. Most of the time I am woken up in the middle of the night by my heart pounding away. I have premature ventricular contractions (skipped heart beats), chest pressure and pain, back pain, joint pain, weakness in my upper body, weird muscle twitches, this very uncomfortable sensation that feels like my nerve endings are crawling up my upper back and into my arms, internal and external tremors, nausea, dizziness and occasionally my body will throw in an intermittent fever every now and again. Sometimes new symptoms pop up and it’s quite discouraging.

After months of the unknown and feeling like I had been living some of the last moments of my life, came a silver lining. I say “silver-lining,” because what was once nameless had finally been named and it brought a sigh of relief. I finally could understand what I am up against. I was diagnosed with Neuropathic Postural Orthostatic Tachycardia Syndrome – also known as “POTS” about two-and-a-half months ago. POTS isn’t a well-understood syndrome by any means and it is often secondary to another health problem like an autoimmune disease, mast cell issues, viral illnesses – the list goes on. POTS is a form of Dysautonomia, which is a disorder of the autonomic nervous system (ANS). The severity ranges for many people from mild to extremely severe – where people are bedridden and cannot drive, walk on their own, etc. I have been told the cause of my POTS is unknown, but most likely from a virus that my body didn’t properly fight off which ended up attacking my ANS.

I am at the very beginning stages of learning how to manage my symptoms. I finally found a doctor who listens to me and takes into consideration everything that has been going on. We are in the process of doing further testing and trying to get to the bottom of what other issues could be going in my body that are exasperating POTS.

The anxiety of going through something like this doesn’t help, as you start to worry about all the other things that could be going wrong and what they possibly could lead to down the line. It’s scary, but with time, I have faith I will be able to navigate and get to feeling more like myself again – hopefully even better than before.

Throughout this crazy time and adjusting to this life of living with chronic illness, I have learned some truly valuable lessons so far:

• Not every person is going to understand what you’re going through. If people show compassion, appreciate them. If people you thought would be there for you suddenly aren’t anymore, that’s okay. Life has a funny way of bringing things to our attention and showing us what we need and what we don’t. I know it will hurt and you’ll feel alone, but the people who are going to be there for you will show up.
• Not every person is going to believe you. People will have their doubts, because you don’t appear sick. You haven’t lost a ton of weight, you aren’t super pale all the time, some days you have better days than others – your symptoms often do a yo-yo act and it’s easier for people to doubt you than to understand. That’s okay too. What you’re going through and what you’re feeling is valid. You know how you feel. You don’t need to provide an explanation.
• Life is too short to be worried about every little thing. Before this all came crashing down, I would worry about almost everything and anything. It was hard for me to sit still. My mind was always going a mile a minute. When you experience chronic illness, you’re forced to slow down. My days now consist of getting through every hour without having a full-blown POTS attack. I am not thinking about what I have to do this weekend or what needs to be done around the house, because something I have learned through this, chronic illness doesn’t care about the plans you made or the things on your to-do list. Thus, it’s better to take each day as it comes and learn to really appreciate the days when you don’t feel too symptomatic.
• Don’t be afraid to ask for help. This has been the hardest lesson for me. I have never liked asking people (no matter who they are) for help. I have always felt this weird sense of guilt whenever I have had to ask for help in the past. I have learned it’s okay to ask for assistance and not feel like a burden afterwards. Sometimes we just need help.
• It’s okay to have good days. One of the challenges I have faced through this is when I do have better days, I am afraid of what people will say or think. Like somehow this situation in my life has defined me and put me into this box where I will forever stay. That’s just not true. When you have better days and when you make strides, you should be able to share those with the ones you love and the ones who truly care. You shouldn’t fear what others will think or say, because if they’re judging you or saying those kinds of things, then they don’t belong in your life. True people will support you no matter what – good days, bad days and everything in the in-between.
• You are your own advocate. I am sure you have heard that many times before, but it’s so true. If I didn’t listen to or continue to listen to my intuition, I would still be on Xanax that the first doctor I saw prescribed me and completely miserable. You know your body. You know when something isn’t right. It’s up to you to follow your gut and listen to yourself even when it feels like no one is listening to you, including doctors. I am still advocating for myself and will not be dismissed or brushed aside. My number one priority is my health and it took me a long time to not be fearful to use my voice. So be sure to get assertive, ask the questions even though you may get an eye-roll, be the person who never stops fighting for yourself. Your well-being is important, and no one can decide otherwise.

The most important thing to remember is to not give up. I know…you’re thinking “Well, isn’t that easier said than done…” Yes, you are right, but you are also so strong. It will be hard to keep the faith at various points in time, but you cannot give up. My Grandmother always told me, “You are a VIP,” and it took me some time to really understand what that truly means. Realizing you are a VIP is one of the most valuable lessons to take away from any tough situation you may be going through. Love yourself, be true to yourself and be kind to yourself.

For more information about POTS and Dysautonomia, here’s a helpful link: http://www.dysautonomiainternational.org/page.php?ID=34