There is No Sleep Here. (a rant)

Sleep did not come. The comforting embrace of my lover, slumber, never came. I lay there, eyes closed, my body quivering with anticipation, but Sleep did not come. Judas.

While Sleep masterfully evaded my seduction, others sought to be my lovers and I would not endure the night in solitude.

Pain was first to arrive. Just as the cool of the pillow began to caress my cheek, before the moon had secured its place in the darkened sky, Pain stealthily slid in under guise of a shadow. More tormentor than lover, Pain does not knock gently, does not seek permission, this unannounced, uninvited visitor takes unbridled pleasure in completely vanquishing the body, it devours, destroys and discards leaving a numb, useless heap, until it is ready to consume its fill again. Pain is not a gentle lover but is surely one of unfailing stamina. It haunted me all night long and was still lingering in my bed when the morning found my bed chamber.

This new lover, Day, courted me more gently and did so boldly in Pain’s presence. A captor still, it rode in on my weariness like a skilled warrior, armed with heat as the weapon of choice, it bid me to join it in the sunlight’s gentle kiss yet threatened to slay me at first light without mercy.

The two lovers fought to have me, though neither cared to save me. The discomfort of the Day’s heat and searing light would succumb at last to the enduring Pain that promised to carry me through yet another night.

Dusk. Day vanquished. Night falls. Pain is aroused with passions anew. And still Sleep does not come. Sleep does not come.

I am lost.

I Am All Out of Spoons

Dawn. I haven’t seen it, my eyes are still closed in a futile last ditched attempt to cling to a sleep that threatens to slip from my grasp, but I can feel it. The sun’s warmth has found an arm and three stray toes that sought refuge from the confines of Egyptian cotton. It is already too hot. Grumble. I am awake. I don’t move a muscle but already everything aches. When I roll over, flinging sheets from humid skin, something new descends and I find I have a different, more dreadful blanket draped around me. Pain.

For those of us in the sisterhood of Endo, the pain is ever-present. It dulls, recedes like the tide, but like the tide, it comes again, breaking over the body’s shore and like the ocean itself, the pain is ever-present. We push through. Every day. Well most days. But not today. Today I am all out of spoons.

Anyone who knows me knows I love cereal. There is something magical about the textural contrast of coarse and crunchy with smooth and silky that plays in the mouth in way that makes my spirit sing. That said, no I did not suddenly digress to speak to you of cereal, the spoon I refer to is not a stylish kitchen utensil. It is not a physical thing. My spoon is part of a theory. (Not a theory involving football-loving politicians, police officers, aliens or other conspiracies though)(shade cast).

Unless you are a spoonie, I may have just lost you with the reference to The Spoon Theory. Coined by Christine Miserandino, the spoon theory is perhaps the best explanation of living with any form of chronic illness, broken down in a way just about anyone can understand. On her website, butyoudontlooksick.com, Christine explains the concept came from trying to articulate to her best friend how it feels to have Lupus (as Christine does) but the explanation captures it so well, the theory and the associated term to be a ‘spoonie’ have become synonymous with Endometriosis suffers as well.

Christine explains the theory best and I encourage you to take a few minutes and read the Spoon Theory story in its entirety on her website. Since you are already here however (thanks for coming), using a combination of hers and my own words, I’m going to take a stab at it. (Yes, the irony of taking a stab at how to explain pain is intentional.)

Here, hold this

For the purpose of this illustration I need you to imagine I have given you a handful of spoons. Real spoons. Let’s say 20 of them. Sterling silver. From Tiffany’s. (We may as well have fun with it.) I have just handed you all your energy for the day, this is your energy supply for the next how many hours you are awake.

Each day you use up your spoon supply as you go about your business. Sometimes you can get through a day with spoons left over, other days you’ll need an energy boost or extra spoons, to make it through. Sleep will instantly recharge your spoon supply. The more uninterrupted, deep sleep you get, the more spoons you start with the next day.

When you are healthy you expect to have a never-ending supply of spoons. But when you have to now plan your day, you need to know exactly how many spoons you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting.

“Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for (you)to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew.”  

So let’s see if you make it to dinner time with 20 those spoons of yours.

Now do this

Make a mental list of all the things you do in your average day, including the most simple tasks, such as ‘get out of bed’. Imagine that each task will cause you to sacrifice a spoon.  When (you) jumped right into getting ready for work as (your) first task of the morning, I took away a spoon. No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.

So just to get out of bed you are down a spoon. Possibly two if your ‘cycle’ is on today. Brushing your teeth will cost a spoon. For the majority of us with Endo, constipation is a daily ordeal, this means taking a…having a…ah, (hmmm)… cleansing your bowels (wink) will also cost you a spoon. You get the idea. Take nothing for granted.

Getting dressed was worth another spoon. I broke down every task to show how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put onthe wretched curse of Endo Belly. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

And consider that

We went through the rest of the day, skipping lunch would cost a spoon, as well as standing on (the bus), or even typing at (your) computer too long. (You are) forced to make choices and think about things differently. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. I explained that some days were worse than others; some days I have more spoons than most. But I can never make it go away and I can’t forget about it, I always have to think about it.

Maybe (you) finally understood. Maybe (you) realized that (you) never could truly and honestly understand. But at least now (you) might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to out and (you) always (have) to drive. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Grey italics indicate where I have used Christine’s words to ensure she is credited for her brilliant work. Follow the links to read more about The Spoon Theory by Christine Miserandino.

While you head over to read that, I’m going right back to sleep. It hurts. I am tired. And I am all out of spoons. Hopefully there will be a truckload of spoons waiting for me when I wake. Or in the very least a gift box from Tiffany’s.

The Entry of Endo

I woke from the surgery groggy and the first thing I recall was a blur of greens and blues that challenged my eyes and mind to focus. I watched the disturbance outside the window for a moment, a robust wind unsettled the leaves on a large, study tree against a backdrop of incredibly blue sky. The vibrant sky promised a sunny day was in store but the wind, which I was now conscious of hearing, seemed to angrily declare otherwise. I would recall this all later as a foreboding of what was to come, the conflict of a storming spirit, but in that moment I was distracted by thirst and a dull ache in my stomach reminded me where I was.

The nurse checked on me, we indulged in idle chatter and then she summoned my mother and the surgeon. In that order. If you have ever met my mother you would know that she is always the priority. It is not spoken, she does not request it, it is simply understood. Such is her presence.

Mum burst through the room equal parts of relief and worry. I could feel it as if it were a tangible thing. More idle chatter. It is amazing what the mind choses to remember or forget. And then entered the surgeon, stage left, beaming in such a manner I was immediately relived and assured all had gone well. I had forgotten that such was the man, ever jovial, ever comforting. His bed-side manner was wonderful. His bill was outrageous. I believe the two are somehow connected.

I have good news and bad news he declared. The good news is, you didn’t have a hernia but the bad news is, you didn’t have a hernia. He didn’t pause long enough for me to digest this odd bit of information and yet my mind had erupted.

No hernia? Are you insane? The persistent crippling pain, I couldn’t stand, I couldn’t rest, headaches, heavy bleeding, the pain, the nausea, the dizziness, the pain, my Lord the pain. You fools rushed me into an emergency surgery with such assurance and now you’re going to stand there and tell me there’s no hernia? What? Wait. What did you say? Say that again.

Endometriosis. I had never heard the word. I had no clue what this thing was, this thing that would in an instant give all that came before clarity and all that would follow purpose. The surgeon explained. Idle chatter. I could barely hear him. Mother wept. The nurse soothed. Idle chatter.

Silence.

It is amazing that for someone who others describe as surrounded by music and seemingly never ceasing to speak, many of the pivotal moments in my life are punctuated by silence.

Pause. Exhale. Prepare for battle.

The diagnosis would not be the finale, it would be the beginning of everything. Gear up sisters, the journey begins.

Ready, set, survive.

The Haunting Sound of Silence

There was no heartbeat. But I know you were there.

I recall the moment the realisation dawned on me, like sunlight awakens the dark landscape with soft kisses bringing splendid colour. You, too small still for the more obvious telltale signs, enhanced my senses and it was as if I awoke one morning and everything has intensified.  I smelt everything. Tasted everything. Felt every sensation on my skin.  What is this? (Concern) What has come over me? (Nervousness)  Am I due? (Contemplation) Wait a moment, (cautious excitement disturbed by calculation) I am well past due. (And here it comes…) I am late. (Realization). My word, praise the heavens, I am late! (Exuberance!)

When the test affirmed by suspicions, I launched into immediate action to nurture you. Rest, exercise, diet, prayers.  You would be perfect.

The unhindered elation can hardly be described. I no longer walked but floated. No longer merely smiled but giggled at the breeze and laughed at the rain. Nothing could contain my joy. Too short lived such joy was. My little wonder.

The doctor pointed and called you a blimp on the screen. Perhaps, but that blimp was ours, mine. And then there was silence. We heard…nothing. No heartbeat.

The world had become a vacuum and the silence echoed. The silence was deafening. Nothingness.

 And then in just a few days you were gone.

I didn’t get to know you but how I miss you. How my heart breaks for what was and what could and have been.

Rest well little one. Live forever wherever you are.

A Letter To My Employed Self

It doesn’t have to be new to be enjoyed. This has always been one of my favourite posts and I sincerely hope becomes one of yours too. Happy #tbt

State of the Ward

There’s a book by author Joseph Galliano called “Dear Me: A letter to my sixteen-year-old self”. It’s a wonderful compilation of letters written by people to their younger selves. Some of the writers are famous, some unknown and all are fabulous. If you haven’t read it, you should. If you have, you understand.

If we could go back and do it all again, some of us would do it exactly the same and some of us would write a hasty letter to warn our younger selves to do it all very differently. Likewise, perhaps when you look back at your last job some of you reflect and think, I’d do it exactly the same. But perhaps, some days, or maybe just in some instances, you think there are things you would do very differently. I do.

Inspired by the idea, I wrote a letter to my previously employed self…

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