The symptoms of any illness can be some of the most telling sign that an individual is suffering from poor health. Systemic Lupus Erythematosus (Lupus) is known for the extensive range of symptoms it brings to the table, or hospital beds. This is why Lupus is known as ‘The Great Imitator’, I guess. Not all people diagnosed or living with Lupus experience the same symptoms. Nor is the progression of this illness in any two bodies the same. I guess what I am trying to lead towards is the idea that, with Lupus, you cannot know what is coming, and anything could happen.


Know Your Body

As a person who is living within a world in which the body is continuously falling apart, I have learned a few important facts. The main one is that one of my biggest priorities is to know what it looks and feels like when my body is functioning ‘as it should’. I have learned how to take my own blood pressure, and what my resting heart rate is. As well, I know what my body’s temperature is, as both climate or my menstrual cycle swing around. Needless to say, I have learned about my body and what it looks and feels like to function well, and how these markers change as my Lupus symptoms flare.

When the Symptoms Change

I am a person with Lupus, a chronic illness with unpredictable symptoms arising often and, somewhat, unprovoked. My symptoms have been wide spread over the last ten years since I was diagnosed with this illness. The disappointing thing for me is that most of the symptoms I have experienced in the years since 2008 have not been phantom or temporary ailments. Significantly, very few of them have been minor concerns. In the past, I had not been one who ‘sits’ on a symptom, expecting to ‘wait it out’ and let the ailment ‘run its course’. This is a process that can be accepted for a cold, or a minor wound or injury. The human body, it seems, is only too ready to recover from an injury, to heal, however slowly this may occur. As I say, in the past I was used to letting my body recover in its own time. I didn’t like to bring attention to myself from the doctor unless it felt as though it was a significant illness or injury. But then I got Lupus.

How Lupus Changed my Relationship with Me

It didn’t happen overnight, but slowly over the weeks, months and years after my diagnosis, I came to realise that my time on this earth was not simply all fun and games. If I was going to stick around and keep up this Lupus life I now lead, I needed to start taking a few serious and seemingly simple steps. No longer could I just get a sore throat and ride the wave to see how far into shore I got. No. I had to take notes, how early in the day, on which day and what I was doing before and during these early stages that may have helped, hindered, changed for better or worse or resolved these initial symptoms and any potential illness or injury that ensues. It was a crash course in ‘Adulting’ 101 that taught me that nothing is as simple as it seems, and everything can be much worse than you expect or imagine it to be. I mean, geez, sore thumbs lead to Lupus, a sore back was Rheumatoid Arthritis and infrequent black outs meant a life of brain lesions, epilepsy and the constant threat of strokes or worse. In my Lupus life, there is no such things as a simple symptom and I can never be too cautious.

 

Why now? Why do I Say These Things?

A few weeks ago, my heart started skipping beats. Or beating irregularly for brief periods of time. Whichever, I am not sure, it is still early days. I was newly under a new medication. That treatment will not be spoken of here, only to say that there was a need for it, it was incredibly beneficial, and it was 100% entirely unrelated to my Lupus. It was the answer to my prayers and it filled a hole in my life in a way I could have only ever dreamed of. This medication triggered a dormant Ventricular Ectopy, or irregular heartbeat. Is it rare? No, many people have it. Is it dangerous? With my lifestyle, and in reflection to the tests I have had so far, there is nothing to indicate I have any reason to worry. As long as I remain off the new medication, I should be okay.

 

How Did I know These Were Symptoms to be Wary of?

I did not know these were symptoms to be wary of. But any person who has a regular heartbeat feels when their heartbeat changes. You may not realise this, but you do. If you were sitting on the sofa and an hour into The Lion King, or your fifth consecutive episode of Seinfeld, and your heart started to beat as though you had been running uphill, you would feel it. If your heart starts fluttering instantaneously, feeling like a wild grasshopper or cockroach flitting like wild in your enclosed hands, you would notice. After three days of these occurrences every hour or so, I began talking to people that I knew. I would explain the feels, elaborate on my diet and activities before and during. Adding on to this, I began tallying these occurrences on a notes app on my phone.

 

Was There Reason to Worry?

Strictly speaking, there was some reason to worry. The only new medication I had started on was the aforementioned one. And that had a notification of risk of heart palpitations. Research into Lupus showed heart concerns were rare, but not unheard-of. None of my other older prescriptions indicated contraindications regarding the heart, also valuable information. Through two weeks of these flutters happening every two hours, almost to the minute, I decided to make an appointment to see my doctor. In my opinion, when it comes to Lupus, there is always a reason to worry. I have been diagnosed with an illness that doesn’t hold to a particular chain of symptoms. It doesn’t care. Lupus holds no prejudices, which means I have to. I have to live a life of care-free an easy-going love and appreciation of every minute I am in this world, and still presume that at any moment any single symptom may come to get me. In short, I do not have much luxury room to hope anything is nothing.

Was there a reason to worry about the new symptom of a fluttering heart? No. Should I have left the symptoms until something escalated and ‘it’ got worse? Probably not. Will I err on the side of caution next time? No, never, I will likely never ‘wait and see’ again. Lupus has made me cautious. That is one way my Lupus has changed me.

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