stoma

Nighttime Rituals.

/ kategresham / 5 Comments

Writing101. Daily prompt.

More and more of us go to bed too late because of sleep procrastination. What are the nighttime rituals that keep you up before finally dozing off?

“Oh sleep! it is a gentle thing,

Beloved from pole to pole!”

Yes. yet another cat picture! But, oh how he sleeps.

Yes. yet another cat picture! But, oh how he sleeps.

Coleridge’s Ancient Mariner had it right. Sleep, it is a blessed thing. Without it, it’s difficult to function, without it I stumble around in a haze of exhaustion, my constant focus on staying awake and making it through the day.  I look back on my life now and wonder how I ever survived. How did I stay in jobs? How did I stay sane? Why didn’t I get help?

What’s the response if you mention you can’t sleep? For me, there were several:

You just need to pull yourself together. Anyone can sleep if she only tries. It’s all in your mind. Just tell yourself you will sleep, and of course you will. It’s not nearly as bad as you think…stop whinging, pull yourself together…

I’ve heard them all. So I lived with it. Then one morning, driving to work (late as usual), I heard a specialist in sleep disorders interviewed. It was a moment of revelation- he described me! I had a sleep disorder, therefore I could get help.

Imagine the power of that moment, the sense of liberation I felt.

I saw a hypnotherapist. I slept.

I shall never forget the next day. I spent it in wonder, marveling at how I felt. If I felt like this, I could accomplish anything. Fly to the moon! Climb Mt Everest! No limits! Maybe those people who slept well, always felt like this?

It wasn’t permanent. I struggled on. Naturally a night person, I went to bed late, took hours to go to sleep and stumbled out of bed, jet-lagged, every morning. I rarely did the things I knew might help me sleep.

Then, a few years ago… brain surgery. My sleep was destroyed. I persevered and endured and heard stories of others whose sleep had been destroyed following brain surgery.

Until… crisis. I could endure not one minute longer.

An emergency visit to the doctor I had recently found ( a miracle in itself) followed, a demand to be hospitalized and sedated and insistence it happen that day. He took the necessary steps. I was sedated that day and hospitalized the next. (And my undying gratitude to my wonderful friend who stood steadfastly by me through this time- thank you Brian. )

So, nighttime rituals? routines? Yes! I have evening routines. I’ve learnt their importance.

  • No television, no phone calls, no computer after a particular time;
  • mindfulness practice and walking a few hours before bedtime;
  • the same bedtime every night and the bedroom only for sleeping and loving;
  • And the other usual routines- showering, teeth cleaning etc…. and for me attending to the needs of a stoma.

I’m not that good at sticking to these routines, even though I know the consequences of neglecting them.

And yes, I have rituals. I find the routine of bedtime soothing and settling, but the rituals lift it to being somehow hallowed.

Let your light so shine. A candle, shining in darkness.

Let your light so shine.
A candle, shining in darkness.

My rituals?

  • Settling; becoming aware of my posture; taking some time to focus on my breath;
  • Lighting a candle and and placing flowers on my small table if I have them;
  • Remembering those I love; practising a loving-kindness meditation;
  • And reflecting on the day with gratitude. There is always something for which to be grateful.

Do I always do this? I confess that I don’t. I have no excuse and I choose not to beat myself up about it. I know some of the habits that will disrupt the flow – I must tape any TV programs I want to watch and it’s better if I don’t have a novel waiting to be read. I seem to have little discipline.

And evening shadows fall across the sky.

And evening shadows fall across the sky.

Writing this has reminded me of the beauty of my simple evening. Tonight I will start my routines early and I will finish the day with candles, beauty, quietness and a grateful heart.

 

 

 

Life with a stoma.

/ kategresham / 12 Comments

I live with a stoma and ileostomy. This means the end of my small intestine (ileum) is drawn out to my skin to form a stoma. I then stick a base plate to my skin and attach a pouch to that. The remains of my digestion- which for you passes into the large intestine for further digestion, empties through the stoma into the pouch. Literally, the facts of life for me.

I’d had ulcerative colitis, hence my long hospital stay and  life-threatening, traumatic emergencies.

Finally, to live or die meant emergency surgery and a body changed forever.

For more than forty years I have lived because of this.  Lived in gratitude, but lived in isolation, never knowing another person with an ileostomy. It’s what we do, isn’t it? We pick up the pieces and carry on. I have never thought about this or realized how lonely it’s been, until last year when I found my best friend from childhood again, and she too, lives with a stoma and an ileostomy. What are the chances of such a coincidence? And how wonderful that I found her!

We compared notes. What appliances do you use? and do you find that works best? What do you do when you’re in a room, full of people, everything’s quiet then your stoma starts gurgling and spluttering? And clothes! Can you wear something that’s close fitting across your stomach?  I always like to have a top that’s loose, do you?

So many questions, and so many more to come. I wish I’d had someone to talk to when I was younger, single and had met a potential lover. When do you raise the fact of a re-arranged digestive system and the additions to one’s tummy?  I wonder what other people do? How do you know the moment to call the ambulance when suffering a bowel obstruction?

We have only just begun this conversation. There’s so much I want to ask her about, so many experiences to share that only a fellow ostomate can share.

Here I need to acknowledge my friends, my friends who listen to me day and night, who meet me with compassion, love, tenderness, empathy and endless acceptance and support. I could not ask for more.

Then, just the other day, a friend who needed a catheter and drainage bag for a few days said to me (we were talking about showering) that he now began to understand a little of what I lived with every day. An insight for him and validation I hadn’t had before for me. Sometimes you don’t realize you lack something until you get it.

I was having a cup of tea with another dear friend when out of the blue she asked me about the details of stomas and pouches and all. Like, how does it stay on? Why doesn’t your skin become infected? What do you use? Show me. Show me the pouch. Show me where it is. Can I touch it? What do you need to do every day? What’s it like? Do you ever forget it’s there?

She listened. She listened with her full attention, no judgement, no revulsion, just full attention. Finally, she sat back and looked at me, then spoke.

“Kathryn, it’s a miracle.”

Other people have mixed responses, but there was nothing here but clear insight:  “It’s a miracle.”

And it is. I live with a miracle.

I offer this to others who live with a stoma: colostomy, ileostomy or urostomy in the hope that it may offer some validation of your daily existence. And in the hope that this post may begin a supportive community. Talk to me!