Why Chronically Ill People Don’t Take Normal Days For Granted

If you live with a chronic illness, you know that life is filled with good days, bad days, hell days, and what we deem as normal days.

A good day consists of discomfort, but it’s fairly good to us and we still manage to run light errands. A bad day sucks, and we’re probably stuck at home doing light cleaning with frequent breaks from fatigue. A hell day ruins our plans, and we’re usually couch or bedridden eating comfort food while equally finding no comfort. But a normal day is one for the books. A normal day is pain-free and we’re filled with eagerness to climb mountains, run a marathon, or bungee jump.

OK, maybe bungee jumping is a little excessive, but you get the idea. We feel limitless.

When we awake on a normal day, we’ll blink twice to make sure we’re not dreaming. We get out of bed, astonished that we can’t feel this pain or that pain, utterly desperate for this normal to last – at least for the day.

And this is why chronically ill people don’t take a normal day for granted.

People who live with chronic pain are aware that a normal day is a treasure. We can’t pass it by in some pursuit of a perfect tomorrow. We know soon that we’ll be silently cursing our body, or soaking our pillow wet with tears in the night, or be curled up in fetal position on the couch with warm rice packs.

We know soon, very soon, that this normal won’t last, and we’ll ache for it to come again – for it to make its permanent home.

So we soak it in. We jump with glee. We hide our pain pills so we’re not reminded this pain-free day is temporary. We hold onto a normal day with thankfulness. We hold onto it like a mother does her newborn baby, knowing that moment won’t last forever.

If you don’t suffer from chronic illness and you happen to find yourself bored – try sitting and being thankful. Be thankful for good health and the fact that maybe you can run errands without limping. Or maybe that you can watch Netflix without an IV drip in your veins. Or maybe that you woke up and your feet hit the cold morning floor without them feeling like you stepped on the sun.

Find thankfulness in your boring, amazingly normal day, and try not to take it for granted.

It is missed by many.

Why This Hospital Photo Is Bravery At Its Finest

In the summer of this year, I experienced a migraine that lasted two months, vision loss in one eye, and endless vomiting with no answers every time I ended up in the ER. I tried everything to rid my migraine and went so far as to get a painful daith piercing, but nothing helped. In October, I experienced the same symptoms that drew me to the hospital once again, except this time, they found five brain lesions and an inflamed optic nerve that’s caused me to become half-blind. I was diagnosed with a rare disease called NMO that requires infusions every two weeks to prevent another relapse.

It’s taken everything in me to get up in the morning. Work has become an endless struggle. I’m supposed to be the strong one, but right now, I feel like a failure – a disappointment in so many areas of my life.

Then I saw a photo of a little girl in the hospital on Twitter that stunned me. Her name is Akane, and she was diagnosed with NMO in November of 2018. She’s lost vision in one eye and she has to have monthly infusions as her treatment. It broke my heart that such a young girl is going through exactly the same thing I am as an adult and yet – she’s smiling.

She is the epitome of bravery in its finest form.

Akane didn’t ask to be sick. Like so many other children diagnosed with an incurable illness, the time they spend in hospitals should be time spent running outside without a care in the world. They should be role-playing make-believe nurses taking care of sick dolls instead of being a sick patient themselves. Life isn’t fair sometimes, but Akane is showing us that though life throws curveballs, we can still be grateful.

Through Akane’s bravery, we too can smile in our pain. We can be brave like her.

Despite the pain that I know Akane is going through because I’m breathing it right now, her smile is teaching me that I don’t have to focus on my pain because I have it. I can ask for some sonic and a board game on my next hospital visit and be content that I’ll have someone to play with. Whether it’s my husband, friend, or mother-in-law, someone always shows up because no matter what, I’m loved. I’m loved like Akane is loved by her mother, Crystal. We have people with us, holding our hand through scary times, and this is what matters- not doing this alone.

It doesn’t matter how bad the pain we are feeling is, as long as we can still feel the love of those that love us, we will survive that pain, again and again. 

Though life threw me a curveball, I can still be grateful I have my husband who keeps me warm at night, a job that pays the hospital bills, friends that have been there for me, my twin who never fails to make me laugh, and a house to come home to.

As this year ends, despite being sick with a scary, unpredictable diagnosis that has changed a lot in my life, I will be OK because Akane is OK. And if a seven-year-old can be OK in her diagnosis, so can I.

If I know anything about what bravery is, it’s because of Akane.

*Photograph for this article is used with permission from Akane’s parent.

*Donate to help find a cure for NMO at the Sumaira Foundation for NMO here.