Getting Sick Means Putting My Life on Hold for Weeks
Even the common cold can have a big impact on this columnist's health
Lying in bed, congested, and surrounded by a mountain of tissues and toilet paper: That’s how I spent the better part of two weeks.
It’s happened enough times now that I should be able to identify patterns and see it coming, but I don’t. Every time, it creeps up on me and I convince myself that I’ll be out of my usual routine for a week, tops. And every time, I’m disappointed as the illness drags out well past a week — sometimes closer to two, sometimes more.
My body doesn’t operate like a normal person’s body. I take immunosuppressive medication daily to help subdue my lupus, but it comes at a cost. While my body no longer attacks itself, my weakened immune system leaves me vulnerable to viral illnesses.
When I get sick, I can’t just live every day like normal and hope I’ll recover in the meantime. I have to make a concerted effort to rest. I need to put life on hold and focus all my energy on getting back to my baseline. And that’s tough in many ways.
Recovering means taking time off work — significantly more than a generally healthy person would need. It means doctor appointments, medical certificates, and sick leave, if I have any left. I’m lucky in that both of my employers are aware of my health situation and empathize with me. I’m also lucky to be in a position financially where I can take extra days off without pay if needed to prioritize my well-being.
Recovering means straying from the routine I’ve curated carefully over the last five years, which, by design, leaves almost no wiggle room. There’s no doubt about who created this schedule; it’s my personality to a T. The only options are committing fully or not at all.
My routine includes five days of rigidity. I know exactly what I’m doing from Monday morning until I get home Friday night. It’s the same thing every week. I realized awhile ago that my greatest tool in combating fatigue was habit. I standardized my week and asked my body for the same amount of energy every week. This allows me to live a jam-packed, energy-filled life. But it only works when I’m functioning normally.
When I awoke two weeks ago, I knew something was wrong as soon as I opened my eyes. Exhaustion hung heavily over my body. Tiredness is my norm, but exhaustion first thing in the morning without any apparent cause is a red flag.
So began a week of extra fatigue as the illness slowly incubated and I developed a cold. Part of me was desperate to pretend it was nothing. I hoped that if I just kept pushing through I’d be over it in no time. It’s laughable that even after six years of taking immunosuppressants, I can still be so naive.
Fast forward to Friday of that week, and I arrived at work only to drive myself back home half an hour later. I came home, tucked myself into bed, and promptly began building the base of Tissue Mountain.
Despite how many times I’ve found myself in this situation, it still hurts. It’s one thing to have a cold; everyone knows what that feels like. But it’s another to have to consciously make my life harder for a few days to get better.
Still, not a day has gone by when I’ve thought about stopping my immunosuppressants. They saved my life and are the reason I’m living and thriving. I live life on my terms because of the medication. But I have to admit that when I’m two weeks deep into a cold, my head and chest hurt from coughing, and the mucus in my sinuses won’t let up, it’s damn trying.
In times like this, it’s hard not to get down on myself. A cold is such an insignificant blip in my life, but when I’m in the throes of it, wow, does it hit deep! It’s hard to think about how easily I’m wiped out by something as simple as the common cold. All it takes is one sneeze from the wrong person, and I have to put my life on hold for a couple weeks. There’s nothing I can do about that.
If you’re in the midst of a cold and struggling to recover, I see you. I’m still not 100%! I give you permission to throw yourself a pity party; this situation sucks. But when you’re ready, take a moment to remember why you keep fighting. Even if we get sick more often, our medication can help us live the best life possible.
The next time you take your pills, remember: I’ve got a glass raised. We’re in this together.
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, and are intended to spark discussion about issues pertaining to lupus.
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