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Sorries, Sorrows, and Shaking It Off

So, today was a new day. I imposed an end to my day of sloth and self-pity, although it’s possible that wine and chocolate are still featuring in my evening. I feel the need to apologise to you for yesterday’s post. For my expression of my weakness, exhaustion, my admission that sometimes it’s just all too much. But I’m not going to.

You see, I’ve spent most of my life sick and in pain. I’ve also spent most of my life pretending I’m not. Hiding the pain. Performing on stage and running off after the bow to throw up and collapse. Both in my work on the stage, and in my real life: my acting career didn’t pause when I left work. When people have caught me out, when I’ve been upfront about my illnesses, when someone’s suspected something, I’ve laughed. I’ve assured them it sounds, or looks, worse than it is. I’ve let them believe my illness was more a formality than anything else, I wore it like a badge of honour, but quickly assured I was still completely capable of anything, everything, life throws at me. And for the most part I have been. I made myself be. I’m stubborn. I’ve excelled and succeeded in areas that ‘healthy’ people would struggle to. Even if that meant making my husband carry me into my office and place me upright behind my desk and hover close by for when I needed him to do something physical for me, like answer the phone, or pick me up off the floor.

And in those rare moments when I’ve been completely caught out, when I couldn’t hide it, when the cane came out, when I had to take time off, when someone saw my crying, or wobbling, or collapsing, I apologised. I was so sorry for making a big deal of it. I was sorry for causing anyone inconvenience. I was so sorry for people seeing me like that. I was sorry for my weakness, my exhaustion, causing a scene, disturbing the peace, upsetting routine, being ‘abnormal’. Being less than. Being imperfect. Oh how I apologised! Did I need to? Probably not. My perception was always tainted by my own standards of perfection for myself. But then again….

The first sunrise in Australia after I arrived home, unemployed

The first sunrise in Australia after I arrived home, unemployed

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Today I Am Sloth. With Chocolate. And Wine

Three legged Lupie

Today…

I am Sloth.

I am walking with three legs, though one barely moves, and one is metallic.

I dress in grey clothes unsuitable for public eyes.I soak in their warmth and lack of expectations.

I am lupie, as only other Lupies would understand.

I do not welcome Lupus, yet it insists on staying like the smelly squatter on the couch who just.will.NOT.go. No matter how many hints I leave.

I am sad, depressed, but not in the darkness of the past. Just dealing with a day that is best forgotten.

I am hormonal. This was not a good time for a monthly visitor to join the frequent flyer on the couch!

I am not myself. I am no one today. I am just… in limbo, waiting for less pain. Less, just less.

I have a high pain threshold after so many years, but today I am crying. It is too much. I am battle-weary.

I am dark chocolate with sea salt and red wine. It makes things more… bearable.

I have a long To-Do list, but my brain and body yell, “no!”

I am full of self-pity. I do not like to be. I think sometimes it is necessary.

I feel I am achieving nil. I feel disheartened. I write to remind myself of the year to date. The effort exhausts me.

I am reminiscing of a life before lupus. But do I remember? Did I have one at all?

I ask myself permission to stop. To do nothing, to rest. I readily agree. Today my brain offers no arguments.

I am not brave. I am a coward today. I fear. I cry. I question.

I dream of travelling again to faraway lands. I wonder if I ever will.

I lay. I do not sleep. I toss, I turn, I hug my iPad and its connection to The World.

I speak on the phone to a friend, but his words confuse me. My brain has no reception. Too much interference.

I am not writing the post I thought I would. Instead I am massaging my body with key strokes, quick, but gentle. Always gently.

I wait for my love to come home. To fill the house with light for I have none. But he is also tired.

I close today with hope that tomorrow brings more light. More, just more.