Last updated: February 2022
When I was little, and I would get sick, my mother would hardly ever let me skip school. She’d push me to get up and get ready, saying it would make me feel better; and if I didn’t feel better, then I could stay home. Somehow, she was always right. Getting out of bed, dressed, and ready to go did make me feel better. She would tell me she could tell when I was really sick just by looking in my eyes.
The pain in my eyes
She wasn’t seeing jaundice – the yellowing of the eyes related to red blood cell break down or hemolysis and a sign of liver damage from processing all the excess break down. Rather she saw the exhaustion in my eyes from the battle waging inside of me that not even I could see.
Nowadays, my mom rarely has to tell me to stay home. I’m pretty self-motivated, thanks to all of her grooming. So, I’m more likely to push myself to go to school than try and stay home. But the fatigue can be so relentless sometimes. I can usually handle the pain. I follow my routine: heat pad, hydrate, pain meds, and I’m usually okay. But the fatigue comes after the pain and often lasts longer.
This past week I’ve been pretty sick. Not in pain, just nauseous. I think I caught some weird stomach bug. Another thing about having sickle cell disease is having a weakened immune system. So, it’s easier to catch bugs and takes longer to fight them off. So, when I do catch a bug, it usually sticks around for a couple of weeks.
This is probably an unpopular opinion, but I would rather be in pain than nauseous. There’s so much I can do to bring down the pain, but nothing helps me when I feel nauseous. And as if that wasn’t bad enough, I’m also so tired. To the point that just getting up to go to the bathroom or eat takes all of my energy. And eating has already been so hard because of the nausea – ugh such a vicious cycle. This has been particularly frustrating because we have exams coming up.
That’s the thing about having an unpredictable chronic illness. It doesn’t care about my plans, and sometimes it has horrible timing. Honestly, most times – not that there’s ever a good time to get sick, but at least it started on a snow day right before the weekend, so I didn’t have to go to clinic. I think the bad timing has to do with stress being a trigger for crises, so I often get sick around finals.
It's more than the pain
We talk about the pain a lot, as we should, but the fatigue is real too. It’s called sickle cell anemia for a reason. It can make you feel pretty tired and have low energy at a baseline. Luckily, I usually don’t struggle with that, until I get sick. Then it’s really noticeable. When I get this way, all I can do is sleep it off. It’s like I have no choice. My body just needs to recuperate. I’m a big fan of sleep but sleeping the day away when you had a lot planned or needed to get a lot of work done can be pretty frustrating.
Giving myself grace
I try to give myself grace in these times. I remind myself of how much I’ve already accomplished by studying a little every day so I don’t have to cram. It’s really important to not take the good days for granted. Every day is a blessing, and you just never know when you’ll wake up sick. But I refuse to ever feel limited by my disease.
In fact, I strongly believe it has made me the person I am today. And that person is incredibly successful, blessed, and strong enough to overcome anything life throws at her. So maybe she deserves a few days to sleep it off.
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