Living with chronic illness means that when it rains, it pours
Being immunosuppressed makes things like a cold or the flu hard to manage
Sometimes I feel like the universe has a scale with my name on it. If the needle ventures past a certain level of good, it gives me a dose of not-so-good to balance me out.
In January, I experienced an unusual amount of smooth sailing, so it was only fitting that by the end of February, things were chaotic.
Ever since I was diagnosed with lupus, I’ve had a common theme in my life: “When it rains, it pours.”
Every person’s experience living with a chronic illness is wildly different. I have rare seasons in which I am almost able to make believe that I’m not actually sick. But that mindset is always fleeting. Life always has a way of reminding me of reality shortly after the thought crosses my mind.
I’ve had a really good run recently. I’ve been able to keep my fatigue in check, I haven’t had any out-of-the-ordinary feelings or niggles for a while, and I haven’t been sick.
For me, a “good” run with fatigue means that I can explain my tiredness with some semblance of a reason. A “bad” run is the exact opposite. I’m talking about waking up on a Monday after a Sunday of doing nothing but lounging, and feeling like King Kong is sitting on my chest.
It never involves just a single hard and slow morning. It’s always a week of waking up sapped of energy and having other people closed-caption my pain by telling me I look tired.
Sometimes it requires realizing that excess fatigue is a sign of a budding cold or flu.
Life used to be simpler before my diagnosis, especially in terms of my health and energy. I could go to sleep exhausted and wake up the next morning refreshed and recuperated. I could catch a cold and recover within a week. There were no add-ons or complications. What I would give to have that be the case again!
These days, everything comes with fine print and a stack of terms and conditions I just don’t have the time or energy to read.
It can’t just simply be a cold. It has to be a drawn-out, two-week process that develops into a sinus infection and conjunctivitis. Then the antibiotics that are needed to fix my respiratory illness will wipe out both the good and the bad bacteria, giving me thrush for good measure. By the time I improve, a month has passed and I’m left begging for respite in the wake of the storm.
Since my diagnosis, it’s never been just a bump in the road. I’m always going into battle. In the summertime, I’ll wake up with a tickle in my throat after a night of sleeping with the air conditioning on. As I desperately try to decipher whether it’s a consequence of breathing freezing air or a viral illness, I’m filled with dread.
As the dread settles in, my brain goes into panic mode. Here we go again, I’ll think — a month of one thing after the other and multiple trips to the doctor’s office.
Do you know what the worst thing about seeing my doctor when I have a cold is? It’s the look after we finally determine that all of my symptoms point to it being “just a cold.” It’s the same look every time: a sad, little smile, and apologetic eyes.
That type of diagnosis always feels amazingly underwhelming, considering the struggle I’m in the midst of as someone who’s chronically ill and immunosuppressed. But there’s no magic wand the doctor can wave and nothing he can do to fast-track my recovery. The cure is the same as last time: vitamin C, nasal spray and saline flush, patience, and most importantly, rest!
Medicine is about helping people, but there’s a point when it’s out of my doctors’ hands. When it comes to recovering from a cold or managing my fatigue, there’s only so much that can be done to help me. Medication might help, but the real onus is on my immune system and my body. Ultimately, it’s up to my body to help itself, which leaves me with the hardest task of all: waiting.
I must wait for the cold to pass or the fatigue to ease. I must wait for a break in the weather, when the sun finally peaks out from behind the clouds.
When it starts to drizzle, I know it’s only a matter of time before the downpour comes. But every day that it rains, I hold out, knowing it’s going to be OK in the end. After all, what’s the worst that can happen? I’m waterproof!
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.