Sunday, 30 March 2014

A day with lupus.

Jake is in the kitchen, getting ready for work and making noise. The first thing I notice is the heaviness in my body. I feel so heavy! I move a little and it hurts. My joints are stiff and sore. My muscles ache. I open my eyes. It must be early because Jake is still here and it's still dark. I let myself fall back asleep, stirring slightly as he kisses me goodbye.

My alarm is ringing and I open my eyes. Time to get up and ready for Uni. I try to reach out my arm, but it feels like a dead weight. It's 8am. I've had 10 hours sleep but I am still exhausted. Somehow I turn off the alarm. My eyes flutter as I try to keep them open. I slowly move one leg, then another. It hurts but I know I have to get myself moving and out of bed. My eyes start to close again and I shake them awake. Then begins the process of sitting up. I have to sit up so I stay awake. I give myself a pep talk, all the while shaking my head to keep my eyes open. Must make it to the closet. Must get dressed. I'm too tired. I'm not going to make it to Uni like this. 

I make my way to the shower, running into both door ways and stubbing my toe in my exhausted daze. In the shower, I sit and let the hot water wash over me, easing my stiff and sore joints and awakening me. I can't wash my hair today. It will take too much energy. Now, wrapped in a towel, a little more awake, I make my way back to the closet. I sit down to dress, not trusting my aching, tired body to stand. Next up is breakfast to give me the energy boost I need to start the day. 

I'm always late out the door. At some point in the morning, I know I'll fall back to sleep. On days when I need to be up at the same time as jake, he sometimes finds me asleep in the shower, or sprawled on the floor in front of the closet, still wrapped in my towel. Every little task is something I have to build myself up for. I only go to Uni for three hours a day, but when I get home I need a nap again. I'm exhausted. There are days when I start nodding off in the car and scare myself by going over the lines. There are days when I can't cook dinner, because I'm too exhausted. There are days where I literally have to choose between hanging out the washing or washing the dishes, because I know I don't have the energy for both. 

My illness might be invisible, but it's something I will have to manage for the rest of my life. I rarely drink alcohol anymore because its not worth the flare that it brings. If I stay up late, I'm risking not being able to get out of bed the whole next day. There are days that I can't get out of bed even after a good night's sleep, so I know not to risk it now. 

Sometimes I get tired of my lot, we all do, but despite the anxiety and depression this illness has brought me, I will never give up. Every day might be a battle, but whenever I can, I will battle with a smile on my face. 

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