When healthy in the past, I looked at illness as a fairly static state of being. But what has become increasingly more apparent to me over nearly two years with lupus is that life with a chronic illness is anything but static. Some symptoms of lupus come to visit now and then; I’m an official holiday home for wolf rash and brain fog. Other symptoms, like fatigue, have stayed with me for the long haul, and just as I have grown and evolved, they have, too.
Of all the symptoms I’ve endured with lupus, the one that’s plagued me most consistently is fatigue. Fresh out of the hospital, it was relentless and crushing. Heavy doses of prednisolone kept me awake into the wee hours of the night, lupus had me sleeping well into the late morning, and when I finally managed to wake myself up, the lethargy was unbearable.
What I remember most was how significant of an effect fatigue had on every aspect of my life. It was a battle just to wake up at all. Getting up at a reasonable time was out of the question — I’d hit STOP on my alarm and reset it four or five times every day. And when I finally managed to keep myself conscious, it was like having sandbags connected to each of my limbs.
In nearly two years, I’ve still never found anything even remotely close to a cure for my fatigue — and a part of me truly doubts I ever will. But what I did find was a way to help manage it. From the very beginning of treatment, my nephrologist has always encouraged me to keep active. What started out as a few gym sessions to give me a reason to be up and out of the house at a decent hour soon turned into the most important key to taking my life back. Though I know it’s not the answer for everyone, committing myself to regular exercise has helped me slowly gain back the energy I need to live my life outside of my illness.
Just as illnesses are not static, neither are their symptoms. On an average day, I once knew fatigue to be all-encompassing, crushing, and overbearing, and even worse on a bad day. Fatigue is no longer what it once was. It’s no longer the consistent inability to get out of bed before midday or complete exhaustion at the simplest of tasks.
Don’t get me wrong — I still have bad days, and sometimes even entire weeks are bad. Mornings like today are particularly unpleasant. As I found myself turning off and resetting my alarm every half hour from 8:30 a.m. until a quarter to 12, I was forced to remember what it was like starting my life with lupus. But the difference is that it’s no longer the norm for me — my positive days now far outweigh the negative.
My hard work has put me where I am right now, reenergized and on top of my fatigue, for the most part. But in no way does this mean it’s mine to keep for good. Being chronically ill means taking what I have at face value and expecting change at any time. Since my diagnosis, I’ve seen my fatigue evolve into something manageable. But next week, I could find myself on a downward spiral to a place much worse than where I started.
My illness as I know it right now is not what I knew it to be back in the winter of 2016, and it isn’t what I know it will become next year. Living with a chronic illness is all about constantly readjusting and re-evolving. But not always for the better.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.