Chronic Fatigue

The other side of the coin.

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Can't sleep

Can’t sleep

Bad night. Couldn’t sleep. Feel exhausted and cranky. Don’t want to do anything. Snarl at anyone who looks at me. Have had two cups of strong coffee. Didn’t help. Want to go back to bed, pull the blankets over my head and oblivion. Know that wouldn’t help. My co-houser tiptoes around me.

It’s only one day, you might say. So? That’s one whole day out of my life. I don’t know how many I will have. Don’t want to waste one. Anyway, I don’t like feeling like this- edgy, scratchy, everything too hard, screaming inside at anything I try to make myself do.

grrr! don't get in my way!

grrr! don’t get in my way!

Some sort of irony? One day I write about how wonderful life is when I’ve slept well, the next I  want to scratch and snarl and bite and write about how bad I feel because I haven’t slept.

Yes, it is only one day and it will pass, but how do I get through it? I don’t want to feel like this all day.

Force myself to have a shower, admit grudgingly I do feel a bit better. Might be able to do something. I put on some Lullabies- soothing and serene. Maybe I’ll do some gardening. Having my hands in the earth is soothing and consoling. The Amish say that having your hands in the earth is when you are closest to God- that must mean I’d be sweet and kind. And gardening doesn’t require much energy, only walk downstairs, put on some gardenng gloves and sit near a garden bed. I know I’ll feel better, but… I’m folding my arms, stamping my foot, pushing out my chin…well, not literally, but I would if I was six! I feel like being six, stamping about, growling, knocking things over…

stamp, growl, glower...

stamp, growl, glower…

All right. I will do some gardening and I’ll phone the rehabilitation centre and book a session in the hydrotherapy pool. Hot water and gentle exercise, followed by a time suspended in the water, wearing a weights belt and a flotation ring. Yum. It’s the best feeling. Completely relaxed. There’ve been times when I’ve almost fallen asleep.

Haven’t seen my friends there for a few months. There’s P who hit a tree, late one night, at around 100 kms. Brain damage with physical results- some paralysis, some slight speech slurring. Works hard at his rehab, visits the pool three times each week. Says it helps. There’s B, don’t know what happened to her, maybe arthritis. She isn’t elderly, uses a walker, finds it difficult even to get into the pool. There’s C, a farmer, had an accident in the dairy and injured his back. He can no longer farm, desperately wants to work. And there’s A, just reaching adolescence, severe Cerebral Palsy, adores the water. It helps with muscle spasm. His carers joke around, as does the man responsible for the pool. Can’t help being cheered by a visit. The atmosphere is always friendly, supportive, we’re a gang. It’s fine to whinge, no one minds and we’ll end up feeling better. I worry about them when I haven’t been able to go. Has P become gloomy and despondent? His long marriage ended last year. How is B managing? She lives with her aged mother and finds it difficult at times. Has A become more spasmed, less mobile, smiling less?

I  have a bet with the pool manager. We both need to lose weight, so we have challenged each other, have regular weigh-ins. Last time I was there, he had lost seven kilograms. I had put on four! Comes from having made friends, having regular lunches and women who bring home-made cakes to book club. Churlish to refuse to eat it. And after all, I believe that any food made with love, is beneficial.

There was a time, after a deeply unsettling and distressing experience, when a dear friend took me to the beach for a picnic- a salad he had prepared. We had a swim, sat on the beach and ate it. I was teaching quite a distance from home so was staying with other friends that night. The wife, fastidious and obsessive about what she ate, reacted with horror to the loving kindness of my picnic. ” But you didn’t eat it?” she said.

Of course I did. It had been prepared with great compassion and love. Nothing about it would hurt me.

Today, from my back deck. How can I complain?

Today, from my back deck. How can I complain?

I’m feeling better! I can survive the day and I’m  enjoying it. It’s a sublime one, a day of sunshine after rain. Clouds in a blue sky, a warm sun that’s not too hot, and a cool, gentle breeze. Perfect day for catching up on the washing or even better, sitting outside with a book. I thank my co-houser for her forbearance. A plump, snarling woman is not a pretty sight.

Maybe I’ll take a sleeping tablet tonight.

A prescription for life.

A prescription for life.

I’ll get there, I have the tools for better sleep, I know it won’t happen instantly. It’s exercise and mindfulness meditation. Some yoga. Some time being merry.

And acceptance- after all, it is only one day.

 

“Ah, sleep it is a blessed thing.” (Rhyme of the Ancient mariner.)

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Kate and the dog, after a busy day.

Kate and the dog, after a busy day.

Sleeping is a beautiful thing.

I speak as a person who can’t always manage it. Today I’m singing, chatty, smiling at everyone I meet, happy, positive, busy…I slept last night!  I hadn’t realized how badly I was feeling until today when I’m  feeling so good.

I know with my head how sleep is fundamental. Fundamental to our health, our well-being, our motivation, our energy… do I need to go on?

But today I feel it in my body, my mood, my level of activity.

The dog could even read and still sleep.

The dog could even read and still sleep.

Do you sleep well? Do you take it for granted? Do you wake up, after a good night’s sleep feeling rested and renewed? And do you take a moment to be grateful? Light a candle sometimes, in gratefulness? I’m quite boring- I nag my friends to be grateful for their ability to sleep. I simply cannot comprehend what it must be like to lie down, close your eyes and…go to sleep, every night. Just like that! Even when I’m sleeping better, I never go to sleep quickly and I almost never sleep for more than four or five hours at a time.

For so many years I lived with not enough sleep. Mornings I struggled to wake up, to get going, to get to work, was late regularly.  I struggled through the day. Most times my main aim was to stay awake. Couldn’t focus, couldn’t concentrate, rarely felt alert, energetic, keen. Didn’t make longterm plans, day to day was enough. Life  was hard. I struggled to get out of negative to zero. Get into the positive? Seemed impossible. I don’t remember ever sleeping easily and well.

The man would tell you he can sleep anywhere! Oh the envy.

The man would tell you he can sleep anywhere! Oh the envy.

Why did I continue like this? Think about common attitudes to sleep. I accepted the view “live with it, if you think about it you only make it worse”.  Or, “anyone can sleep, it’s all in your mind.” Or, “you sleep more than you think”.  And the criticisms: ” You’re always tired, You’re always late,…” Unless you’ve experienced chronic lack of sleep, you cannot understand. It’s the truth of “walk a mile in my shoes.”

For whatever reason, I lived with it. With chronic lack of sleep, with exhaustion, with poor concentration, with poor motivation- after all, why want to do something when I’d be too tired anyway?

One day, on the way to work, late as usual, I heard a specialist in sleep disorders interviewed. He described me. He described how I couldn’t sleep- hours to go to sleep, difficulty waking, feeling jetlagged all day… and named it as a sleep disorder!

Revelation! If I had a sleep disorder, then I could do something about it! It could be fixed! Maybe I would sleep and maybe, just maybe, I wouldn’t always be so tired.

What to do? I found a hypnotherapist. One session and that night, I slept! I spent the next day in a state of wonder. I knew I could do anything. Fly to the moon, climb Everest, anything was possible. And I wondered. Did people who slept well feel like that every day? Was life that easy? That much fun?

Pusska liked to keep some books handy, just in case she couldn't sleep.

Pusska liked to keep some books handy, just in case she couldn’t sleep.

Did better sleep continue? Am I now one of the fortunate ones who go to bed and go to sleep? Well no, it hasn’t been that simple. There have been periods when my life has been calm and sleep has been better. There was one scary and difficult time when sleep was disrupted completely, but that’s another story.

I understand myself better now. Such self understanding has taken sixty-six years and several years with a wonderful therapist. Self understanding, growth and change don’t come easy. Having now experienced times when I am rested I have great compassion and admiration for my sleep deprived self. How did I survive? How did I hold down jobs? Even turning up for work was an achievement. I can forgive myself for so much.

Today? I continue to learn about and to understand chronic insomnia.; to be grateful for the simple, necessary things of life; and to cultivate those practices that aid my rest.

For the times I’m rested and refreshed I shall be forever grateful. And for those other times? I’ll accept them and not worry. Today I know that if the non-restful times continue I seek help and I know that I will be helped. And I’m grateful for wisdom and experience that has given me tools so I’m no longer powerless or helpless.

Sleep comes naturally for cats.

Sleep comes naturally for cats.

What are some of the things I’ve learnt? Knowing when to ask for help and being able to accept it and having the courage to be vulnerable and humble enough to learn.

 

 

The Great co-housing adventure continues.

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Boxes and furniture put wherever they would fit.

Boxes and furniture put wherever they would fit.

The front porch after the removalists left.

The front porch after the removalists left.

Perhaps there’s a reason why  Wendell Berry’s statement “Don’t own so much clutter that you will be relieved to see your house catch fire” caught my eye this morning.

But I would never be relieved to see my house catch fire and while I know we have too much we are looking forward to sorting and simplifying.

I want to show you our home as it is today, after the removalists have brought everything, right at the beginning. I want you to share this adventure of co-housing and community with us, the creating of the home, the evolving garden, our own journeys, the shared journey, the challenges we face, the successes, the life – our own, the house, the garden, the community, this valley and neighbourhood.

When you see these photos it might cross your mind that there’s quite a lot… and I’d agree, but there are mitigating circumstances. And here’s the background.

I am more able to understand nowadays the devastating effect chronic insomnia, illness and continual exhaustion have had on my life. The more I understand the more  accepting and compassionate toward myself I am. As I become less tired and have fewer external demands I’m experiencing the contrast between a life chronically exhausted and a life less so.

No wonder I have spent years reading mainly escapist literature. No wonder I have started so many wonderful books only to put them down because I couldn’t concentrate. No wonder I have such a long list of things I want to do when…

There are flowers by the door- not all is chaos.

There are flowers by the door- not all is chaos.

I have just spent my longest period ever in a full-time permanent job.  This was interrupted by severe and long illnesses, but…with a secure wage I experienced the joy of buying a spacious light-filled house –  three bedrooms, two bathrooms. And then I enjoyed filling it up- such pleasure in having enough linen for guests, buying  quality saucepans, a dinner set, crystal glasses, furniture that wasn’t just cast-offs and the indulgence of books and books and books (and yes, clothes and more clothes).  I remember feeling I was a proper adult when I bought myself a new and beautiful fridge…and then a washing machine. I could look after myself, I could be independent, strong and capable. So empowering. But illness, Chronic Fatigue and exhaustion meant that I couldn’t keep up with the sorting and clearing out and throwing away…it’s all come with me.

Angela, my co-houser, moved to the UK eight years ago, for a planned long-term stay. Her possessions- furniture, linen, books, kitchen…all went into long-term storage. The move didn’t work out. Angie arrived back in Australia- heartbroken, homeless, jobless, broke…but not friendless.

This is Angela's bedroom. Wait until it's painted and organized!

This is Angela’s bedroom. Wait until it’s painted and organized!

When she found work her choice was to house-sit, furniture and possessions staying in storage. A move into a small unit meant there was no space to retrieve her belongings. After several years, my dominoes all fell perfectly and we bought this house. I moved… and all my stuff. Angela remained living and working in the city, but  was finally able to move her long-term stored things to this house. (Imagine her delight in seeing much cherished possessions again! ) We stacked everything somewhere- we are talking two households here and neither were minimalist. And this house has no garage or external storage space.

At last Angela has reached the moment when she can leave her current work, uproot herself from the city and move to her home in this small, beautiful, rural valley. Today, the unit has has been packed up and all the contents are now here, Angie is yet to arrive. As Max says “Let the show begin!”

Share our adventure!

One of my kookaburras yesterday.

One of my kookaburras yesterday.

(And I thought this post was going to be all photos! Silly me.)

Nighttime Rituals.

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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.