A Life Entered Into

2am is peaceful. 2am makes no demands. 2am is where if there is any energy to be had, it can be found. But 2am becomes 3am and then 4 am and soon you are looking at the sun poking it’s face through a chink in your curtains.

Then you sleep. You sleep so that the day passes, and you don’t have to feel the pain of it. And when you wake, you eat three Weetbix and drink a cup of tea then try to sleep some more. Except your breakfast should be dinner and your dinner should be breakfast and you hardly see your beautiful, hard-working husband who tries so hard to be a loving and comforting presence for the few hours in which you see each other.

You spend most of that time trying to convince your husband for the umpteenth time that being this tired is worse than running on empty – it’s like running on negative – which isn’t even really an analogy that works. You stare into his sad eyes and wish that you could reach out and tell him that it’s all going to be ok.

But as you stand and try to cross the ocean between you, that octopus labelled Chronic Fatigue Syndrome, labelled Fibromyalgia, called a seizure disorder, named OCD and anxiety and depression, wrap their ancient and familiar tentacles around you and pull you back and suck you under.

John Donne says that no man is an island and how you wish that were true. But you’re not a man and you feel very much like you are a tiny piece of land that has separated from a continent and is adrift, getting further and further from home.

You’ve probably guessed by now that when I say ‘you’, I very much mean ‘I’. But it’s easier to write about things that deeply ache in the second person.

What I have written does not begin to tell the story of felt terror, of shame, of anger, of resentment, of sorrow, of dreams lost to the insidious beast that is sickness. Had I have stayed there, exiled, buried under all the above, I would have done exactly that – stayed there. And this would still be my life.

However, the aforementioned husband, Andrew, who had tried to say many encouraging things to my impassive, resting-bitch-face talked to me about a practice of gratitude. I was unimpressed and uninspired. Things are what they are. You can’t polish a turd. Being real was where it was at. It is what it is.

Except that my reality continued to be what I made it – The Boulevard of Broken Dreams.

Would it be so very tropey (yes, that’s a word now) to say that this suggestion to cultivate gratitude changed my outlook and therefore my life?

Andrew asked me to name five things for which I was grateful, and I honestly felt like telling him to shut up. It was insulting. How could he say something so trite when I lived in a constant state of crisis and flight?

But I did it.

‘I am grateful for this comfy bed to lie in.’

‘Good, now another one.’

‘I am grateful I have a nice view out my window.’

‘Cool. Now maybe something not to do with being in your room.’

*Sigh*

‘I’m grateful for Timmy – he’s getting old but I’m still grateful for him.’

*Bemused look*

‘I’m grateful for chocolate.’

*Wee grin*

‘And… I’m grateful for you.’

‘Wonderful! Now do this every day – five things – and say them out loud.’

‘How long does it take to work?’

‘It’s not about how long it takes; it’s about seeing what is all around you.’

‘Well, I don’t see it.’

‘That’s ok – you will.’

*Depression regains a foothold*

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The second day it is easier, the third day I have some quite leftfield answers like ‘Dilmah Extra Strength Earl Grey Tea’ and ‘the way our lawn rolls and undulates like waves.’ It was hard not to go past five things.

Life was still hard. I felt just as sick and just as hard done by. But as the weeks went past, I started to genuinely marvel at how lucky I was. I might have to sleep 16 hours a day, but I have a very lovely room to do it in. I might have limited movement but at least I can walk unaided. I might be sore but at least I have a brilliant chiropractor.

In recent days, I have begun to feel somewhat dissatisfied again with the status quo. I have begun to complain about my stiff muscles and the pain from the excision wound from the surgery I was fortunate enough to have been offered. I have felt disquiet at the extra tiredness that lingers and the nights where the residual anaesthetic stops me sleeping so well. I have these repetitive, frustrating dreams in which I am stuck in the confines of a camp village, unable to venture out rock climbing and swimming like everyone else. Instead, I stay behind and make Milo and hot drinks for when they return. And I feel lonely even in slumber. If I exercise in my dream, I feel exhaustion in my dream.

It is no coincidence that I have forgotten to say each day five things for which I am grateful. So, I start again. I am grateful that my body is healing so well. I am grateful that I have received so much support from friends and family. I am grateful for this tiny seaside community that has adopted us as its own. I am grateful for my best friend who tells me that she loves me so much and says back to me ‘nighty-night’ at the end of our conversations. I am grateful for a total reset of my body clock post-op, which means I go to bed at 10 and wake at 8! I am grateful for Andrew and Timmy, and I am grateful for gratitude.

Oops, I went over five things, but I am sure you will forgive me.

Life is as you see it. If you see misery, you feel miserable. If you see blessings and beauty, then you feel blessed and beautiful. I cringe at the cheesiness of saying this. It feels like believing in the power of manifestation or positive thinking. I’m sure these have helped a lot of people. But that’s not what this is. It is seeing the truth. And the truth is that there is goodness everywhere. We are not ignoring what is hard. We are allowed to talk about and experience our pain. But it doesn’t have to own us.

And last night I dreamed that I was chosen to run for a 20-hour competition. And instead of making Milos for the team, I ran my 20 hours and crossed the finish line suitably tired but triumphant.

I am grateful for dreams.

Finally, I am living my life. Am I well? No. Do I feel grateful? Hell, yes.