People often tell me that I don’t look sick. Some of that is because (on most days) Lupus is a sneaky, underhanded coward of a bully that does its best work all alone in the dark. It doesn’t need to show itself on the outside in order to be busy on my insides. And, even when it’s not rudely causing my body to attack itself, it’s still in there lurking constantly, silently plotting its next sucker punch.
Just like the boogeyman under your bed at night. Silently waiting.
Also, though, I try my best not to let people see my illness. I don’t want to look as bad as I feel. I want to put my best self out there and go help people because it makes me feel so much better to do that. So I’m actually thankful when I hear peoples’ surprise that I live with a chronic illness. I want people to see me, not my struggles.
Basically, I just want to look normal. I want to live normal. And, really, I just want to BE normal.
Today, though, I’m definitely not normal. Today, I’ve been struggling. And today there’s just been no hiding it. No amount of Maybelline would’ve helped at all. Nope. My boogeyman is definitely partying on front stage right now. I’ll even give you a rare little glimpse of him.
Right now I sit in my office enveloped in as much darkness as I can grab hold of. I can hardly bear to look at my laptop screen even though it’s dimmed low and tilted downward. My head absolutely screams, my joints hurt, my body’s so weak.
I spent the day today trying to will it away. I just want to will it all away … my not normalness. This was my day off. I had things to do. Normal people things to do.
Nothing worked, though. And nothing got done. I tried to sleep, but couldn’t. I laid there so weak, too queasy to move, but I knew I needed to try to get something down. The kitchen just seemed so far away today … and the daylight was just too bright outside of my room to leave it.
So I just laid there alternating between willing myself to get up, and just wishing somebody would happen to come over so they could make a smoothie for me. Easy on the banana, please … my taste buds are extra sensitive today.
I finally accepted that the doorbell was not going to ring before I passed out from hypoglycemia, so I pulled myself together enough to go to the kitchen and throw some fruit and yogurt into the Nutribullet. And, yes, I put way too much banana in it, and, yes, I also somehow splattered it all over the kitchen cabinets. I still haven’t quite figured out how I did that. Maybe it’s because I never opened my eyes all the way while I did it.
Regardless, I got some of it down and started to feel somewhat better after that. I went back in my darkened room again and got back in bed. I finally had enough of my wits back about me that I could begin to think.
I’m not normal (whatever “normal” is, anyways). He’s told me this before, but apparently I need reminding. I am not going to live a normal life because, for some reason, God has set me apart and given me something special to deal with.
My Lupus, my own personal boogeyman.
I am going to have days like today, but I’m also going to have good days, as well. I just have to learn to be thankful and content with both. No matter when they come, or in what ratio.
Just be content, Debi.
I had a friend ask me to pray for them the other day. They felt beaten down by this world and told me about what’s plaguing them. I haven’t been able to get this off my mind today because I try so hard to keep my own boogeyman hidden, yet this person shared theirs so openly with me. I really appreciated that.
I think it’s important to share what’s plaguing us. We have much to teach each other. And, really, we all have at least one boogeyman that we deal with, don’t we? That one little thing we keep to ourselves that makes us feel “not normal”?
If you haven’t yet, believe me … one day you will.
This is our own little “something special” that God gives each of us to deal with. It’s our own unique, God-breathed channel through which His Spirit is working on us individually … refining us … drawing us closer … to lean in tighter on Him.
He doesn’t want us to pretend it’s not there. He doesn’t want us to try to be normal. Normal is too small for our God. He wants more than that for those He loves.
He wants us to trust Him.
No matter what we’re facing. No matter how we’re feeling. He wants us to be still and listen. Just listen. He wants us to believe that He loves us. Yes, He absolutely does. He wants us to hope in Him. Always, always have hope in Him.
And He wants us to believe that He gives us what’s best.
Even when we think it’s too much. It’s not. Even when we think we can’t. He can. And even when we become so incredibly weary from faking great strength, He waits patiently for us to realize we can simply rest in His.
Thanks for growing with me. ❤
“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” (2 Corinthians 4:17-18)
Oh Debi,
How I wish I could’ve rung that doorbell for u, made that smoothie and offered a little comfort. Your words permeate right thru to my soul … the issues or diagnosis may be different but the darkness of it all I understand, more than I’d like to admit. I ‘Get It’, I REALLY, REALLY Do, and as much as it saddens me to know of ur struggle, Debi, ur honesty, the way u are able to articulate ur heart, ur pain, but more importantly, ur FAITH, it touches me. Through you, God’s not only reaching out to me, he’s Teaching me…Do Not Give In, U Are Not Alone. 💖🙏
Praying for you sweet friend, that today is a better day, one where u can Enjoy the warmth of the Sun ☀️
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Oh, Angie – thank you so much for your encouragement. My heart is just so thankful that the tough lessons I’m learning are speaking to you. It helps me so much to know that. And, no … you are definitely not alone. Keep fighting. Keep clinging. ❤
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Debi, Your honesty and confidence in Jesus and the Holy Spirit are amazing. Allowing your more challenging days and all others, to count for the Gospel is testimony to truth. Your daring and choice to lean in to the heart of God no matter what makes apparent a strength not possibly found is human beings. Joy. Prayers DebI. Thankyou!
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It’s all God working in me, Ellen – He has grown my faith slow and steady through the challenges He’s led me through. I’m so thankful to know that I don’t have to do any of this alone. I truly don’t understand how anyone can deal with this world without faith. How do they even get out of bed in the morning without that hope? Blessings to you, Ellen ❤
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Thank you so much ♡
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Thank you so much for reading … ♡
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Of course! Praying for healing amf comfort for you durjng this time.
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Powerful writing. Thanks so much for sharing this!
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Thank you – I so appreciate your encouragement. Thanks for reading!
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Your blog is beautiful, and touches my heart. As a fellow person with invisible chronic illness, it reminds me to remain hopeful and to appreciate the small things. Thank you for writing!
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Thank you for your encouragement, Amber! And yes … there’s always hope. ♡
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