There are so many words in the English language that we often misuse according to the definition. For example, in the chronic illness community, we see people often say, “I feel like I’m dying. Like, literally dying.” I’m willing to venture out on a limb and say 99% of those that say this are, in fact, not literally dying; they just feel very bad that day. Another term that is not only misused, but overused to the point that it’s lost its real meaning is “exhausted/exhaustion”. If you Google the definition for exhaustion, two results come up: a state of extreme physical or mental fatigue the action or state of using something up or of being used up completely.
Living with hyperthyroidism is the literal embodiment of exhaustion. For a decade, I had lived this way without knowing why. I had such extreme fatigue that it would take every ounce of energy in my body just to take a shower. Because of the extent of my exhaustion, I began suffering from “brain fog”. I couldn't focus or concentrate on anything for extended amounts of time. It was a true mental workout to simply think . My brain felt as if it were trapped in thick, sticky mud. Even the simplest of questions took me several moments to process. I felt as if I was having to interpret and translate a foreign language. I was unable to simply provide a quick answer.
In 2012, I went to my primary care doctor with my concerns about my symptoms. She ran some blood tests and determined that my thyroid was low, but deemed it to be okay and of no concern. I am not a medical professional and I definitely was not familiar with chronic illnesses at that time, so I blindly trusted my doctor and just assumed things would resolve on their own. As you can guess, those symptoms did not resolve. They only intensified. My lack of knowledge really held me back from questioning this doctor more about my concerns or trying to be referred to a specialist. I am thankful to say that she is not my PCP anymore. She may be a good physician, but she was not a good fit for me.
In March of 2015, I finally felt like I had an answer. I was diagnosed with hyperthyroidism. I’d suffered from moderate, sometimes debilitating symptoms for nearly a decade. There was now hope for a potential treatment plan, a better path to wellness. Since diagnosis, it seems as if nothing has gotten better. I have often felt l like it’s getting worse. The symptoms began worsening and I started suffering with insomnia. On a good night, I could get roughly four hours of sleep. I tried all of the OTC options I possibly could to help me sleep. Nothing seemed to help.
When I explain what it’s like to live with hyperthyroidism to others, I tell them to picture what happens to a bathtub full of water when you let it drain. The water begins to rapidly swirl into a tornado-like funnel and empty from the tub. That is hyperthyroidism. The water is your energy. The drain switch is an activity as simple as taking a shower or going to the bookstore. It takes incredible mental fortitude to push through the sinking sand we call life when you’re constantly fighting your own body to simply make it through one day. No matter how much I rest or sleep, this is the way it is. This is my life.
In 2015, I was also diagnosed with Ehlers Danlos Syndrome, EDS. A geneticist diagnosed me based on family history and a physical exam. I was then sent to physical therapy. The PT was supposed to, in theory, help me. I was having hypermobility & dislocations in multiple joints. PT did stabilize my joints better though.
Feeling as if my doctor had written me off, I found a new physician. I began pushing for a better treatment plan and answers for the worsening symptoms. Those answers came in April 2016 when I was referred to an endocrinologist and subsequently diagnosed with Graves Disease after having a radioactive thyroid uptake scan. My thyroid medication was switched and I was put on beta blockers to help with extreme tachycardia. There was minimal improvement. Unfortunately, it didn’t last for too long.
Due to the location of the thyroid, I had a constant feeling like there was a marble stuck in my throat. It wasn’t painful, but it was most certainly a very odd feeling and made swallowing slightly more challenging. The best analogy I could offer here is to think about having to take a really big pill, a “horse pill”, and it gets stuck in your throat. No matter how much water you drink or how much coughing you do, nothing alleviates the discomfort. After being examined, I thankfully learned that it was nothing serious, but is simply a symptom of Graves Disease.
After giving the medications prescribed for Graves Disease enough time to take effect, I realized that things were still not as good as I thought they could be. I had done enough research on my own to know that something else was going on. I strongly felt that I had postural orthostatic tachycardia syndrome, better known as POTS. I was still having severe episodes of tachycardia despite being on multiple beta blockers. At times, my FitBit registered in the 120s and 130s when I was only lying in bed!
I finally found a doctor that truly listened to my concerns and was humble enough to admit she was out of her realm of expertise with my case. She referred me to Vanderbilt in Nashville. After waiting for what felt like an eternity, I was finally able to make the trip to Nashville to see an autonomic dysfunction specialist. There, I had a tilt table test and a catecholamine blood test to test my levels of norepinephrine, epinephrine and dopamine. These tests confirmed that I have hyperadrenergic POTS. I began taking salt tablets to help with low blood pressure.
This trip to Vanderbilt was incredibly encouraging. I now know that there are doctors out there that can truly treat me. They understand my illnesses and don’t make me feel like my concerns are unwarranted. They sincerely want to help me and that is, by far, one of the most refreshing feelings I’ve had in the last seven years.
I simply want to help educate others on the illnesses I have. I want people to understand that those of us suffering from any chronic illness really do just that: suffer. Some of us have external signs of our internal health complications, but then there are people like me. Other than being very thin despite constantly trying to stuff my face, I look “normal”. I’m not lazy or a flake and neither are the people you may know that are sick. Chronic illness varies on a day to day basis. In some cases, it’s an hour to hour basis. Just because I’m able to get up today and take a hike to photograph nature doesn’t mean I’m “better”. It just means I had a good day. We must always take advantage of every good day and every good moment because we don’t know when the good will come to an abrupt halt.
I also want to encourage everyone reading this to never give up seeking answers. If something doesn’t feel right, keep pressing forward. Do not allow anyone to negate your suffering and feelings because of their inability to step down off their pedestal and realize they’re not God. Nobody knows your body better than you and no one will advocate for you better than yourself. I have learned to pace myself with what I do each day & am careful not to overdo it. Over the last year, I have come to realize that I have limits. It’s been difficult, but I have learned to give myself grace & realized that it's okay if I can't do everything I want and/or need to do in one day. There’s always a new day ahead.