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This is one of those mornings when I wake up, wrapped within the arms of Lupus. One of the mornings when pain taps me on the shoulder and says, “Wake up Shoy. We are spending the day together.” This is not one of my good days… but getting up is the hardest part.


This is one of those mornings when my mind wants to jump out of bed and start my day but my body refuses to. I lay on my bed and pain sweeps through every fibre of my being, and the only thing I can do is let it. I am alone. In the darkness of my room I cannot even find the tears…or the strength to cry.
With the pain comes a flood of emotions: Anger, hurt, bitterness, frustration. Then there comes the feeling of being cheated. Robbed of the miracle of being healthy, robbed of the way my body felt before Lupus, robbed of the luxury of choosing to eat whatever I want, robbed of the chance to jump out of bed when I want to… at least for the days of my youth!!I know now that no matter how long I have Lupus and how often I have these days, whether it be every month, every week, every couple of days, this is something I am never going to get used to.The pain intensifies to the point where I cannot even think. This I count as a blessing in disguise, for what it does is block out the thoughts that would no doubt drive me into depression. It hurts to move, but I have to search for that one little spot where the pain is not so bad. Every turn is agonizing. Then I find it… that beautifully wonderful spot, and I feel like the happiest person on the planet!After waking up, it is expected to feel rested. However, my body feels like I’ve just completed a marathon. As I begin to slowly doze off, it is Reality who now taps me on the shoulder and whispers, “Hey Shoy, we got a whole day ahead of us.” Sometimes the things that keep us going are the harsh but constant realities of this life. The world will not stop for our pain. Time won’t stand still because it understands that in this state pain and torment, we need to pause. Life keeps moving.

My body is screaming for me to rest but I somehow summon the strength to do something that seems all too natural and easy for others, but has become a great task for me and many others like me: To get up out of bed. As my feet fumble for my bed slippers and I stand, nothing and no one on the face of this planet can convince me that there is a flat surface beneath my feet. My eyes have deceived me for it is a FACT that I walk on pins and needles.

I’m positive that I’m not the only one who has mornings like these. While for some it might be worse or not so bad, for others it may be exactly the same. Nonetheless, we all share one thing in common: We all have to get up.

I walk the entire mile from upstairs to downstairs and as a pull the curtains across the window, I realise just how blessed I am to be given the chance to see God’s beautiful creation yet another day. All my senses are intact and I am able to walk. If I can make it downstairs then I can make it through the rest of the day for indeed one step leads to another. I woke up in agony… but I woke up. I open the door to outside and a new day. Despite everything, I cannot stop the smile that lights up my face.

Lupus butterflies are different from all other butterflies. We have the ability to flap our wings against the wind and ascend to great heights even though our wings are often achy or sometimes broken. We have the ability. It is our choice to take advantage of it or not. Ƹ̵̡Ӝ̵̨̄Ʒ…♪♫.¸¸♥Butterfly fly away♥¸¸.♫♪…Ƹ̵Ӝ̵̨̄Ʒ

By: Shoyéa-Gaye Grant©

SDC11301
First Published in The Lupus Magazine

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