looking back

As the old year passes, I take to the hills. Not literally, not physically. But in my mind's eye. 

Drifting off into that place between waking and dreaming, there is no real time to mull over 2014 before I surrender to sleep. No need really either. These past twelve months, I've done enough mulling to last a lifetime.

But it's good to take a cursory glance back across my shoulder, back down the mountain of the year. For it is only now that I can see it has all been worth it, that I did the right thing to keep going, to keep on hoping and not bail out when the going got tough. 

That is what 2014 has taught me, to keep on going...no matter how slowly.

Because as is often the way out in these mountains, it's only when you've slogged for hours up that hillside, worked through the sweat and the tears to stand high on the crest with the sun on your face that you can truly measure just how far you've come. 

Here on the cusp of the mountain, it's finally easy to see where I've been...and where I'm going next...

Joining in with these gorgeous and inspiring girls: 

Anna: Health doesn't equal happiness

Faye : 10 Things I've learned in 2014

Katharine: What 2014 taught me

maybe

Maybe  it needs a bit more time. Maybe this is just a rocky patch. Maybe the mountain is just a little higher than we thought. Maybe it will require a little bit more courage. Maybe I haven't fallen back as far as I thought.

No one said it would be the easy. This dream. This life. This living. Learning to fly on my own wings. 

But maybe it will be worth it. Maybe wellness will come again. At the right moment. Maybe the courage will be there.

Maybe I don't have to give up hope, after all.

on ups and downs

Living with a chronic illness means there are good days and bad days, mountain days and fire-side days.

There are days where I feel on top of the world, when I literally am on top of the world. And there are days when just getting out of bed seems like an expedition.

I'm slowly starting to accept that I shouldn't be ashamed of these secret days. I shouldn't try to hide them away. I don't need to talk about them all the time. But they are nothing to be ashamed of either.

Because this is the pattern of my days in these green mountains. These highs and lows are what make the landscape so very interesting.

And in my daily life, it is these secret, quiet days that make the others so very, very special.

struggling

This time two years ago, I had just taken my finals, graduated from University, completed an intense teacher training course and then moved permanently abroad. With no specific job prospects or family nearby. Emerging into adulthood is frightening enough at the best of times. But it's been even harder trying to do it in a foreign country with a chronic illness that no one seems to understand.

There are no longer my parents to buffer the unhelpful comments and incomprehension of people. I've had to learn to stand on my own two feet. And sometimes that takes a lot of my precious energy.

The worst of it, is once again having to re-adjust my horizons, learn to accept my limits.

The past year or so, I've really struggled to accept the fact that I've got this illness for life. Without realising it, I was convinced that once I had a University degree under my belt, this illness would somehow magically disappear and I'd finally be free from it's shadow to get on with the rest of my life. No such luck... 

For months and months I've been feeling particularly under par and that seems to have plummeted me into a rather blue frame of mind. 

But finally finding some proper medical support out here this summer, trying a very French course of treatment and most of all learning once again to be more open and honest about my health limitations to those around me has been offering me a fresh perspective on things. More on that later...

"la cure"

July and August. 

For the French, these are the holiday months. Suncream. Straw hats. Ice creams. Coffees on pavement cafés. Apéros on the balcony. Festivals and village fêtes stretching long into the night.  Market stalls groaning under the weight of plump, sweet summer fruits. Peaches, nectaries, plums, apricots, strawberries. Melons. 

For me this year, July and August have been a time to emerge from my hibernation. To slow down, take stock. And finally get looked after. 

Daily baths in thermal pools. Hosed down. Plastered in hot, stinky, thermal mud. Balneotherapy. Physiotherapy. Group therapy. 

Eating better. Sleeping better. Walking better. Living better. Feeling (a little) better. 

As hippy-dippy as it might sound, my time spent up at the thermal baths has felt like a re-birth. It hasn't cured me. Sadly nothing will do that. But it has helped me to accept the situation. Myself. My life now and my life in the future. 

At the end of July, I was waiting for the baths, a downtrodden and defeated British girl. At the end of August, I've emerged a more confident, more hopeful British girl, who's now a little more French around the edges. (After a month as a curiste, it would be impossible not to feel a little more gallic, after all).

July and August. The holiday healing months. Healing my body. Healing my mind. Healing my soul. Three weeks up at Barèges. Hours spent being pampered. Making wonderful new friends. Dreaming of other possibilities...

Days saturated with mud and water and golden summer light.

floating

I was nervous. Until I lowered myself into the water. First my feet, then legs, then belly, then arms. All the way up to my chin. 'Trust me,' the physio said.

I realised in that moment that I've become wary of trusting strangers with the knowledge of my illness. For fear they'll make cruel judgements. For fear they'll laugh at me.

'Trust me,' he said. And with my heart racing, I lowered the rest of myself in, until the water was all the way up to my chin, closing over my body. I let the water come, I let the physio hold me, I let myself stop being terrified.

I let go.

Because there, in that moment, it didn't matter if I'm tired or achey. If I slept badly last night. The only thing was the water swooshing around me, holding me up.

The physio gently manipulated my muscles and limbs. Not trying to hurt me. But helping me to feel a little better.

The only thing was the water moving me from side to side. The deep wrinkles slowly forming on my finger and toe tips, rather than on my brow.

snakes and ladders

 The occupational therapists called it "boom and bust". I prefer to think of it as "snakes and ladders". 

When I moved over into that other place, the land of the sick, I became a player in a never ending game of snakes and ladders. Some days I jog along fine, seemingly unaffected. From time to time an obstacle blocks my path but by dogged determination and perseverance, somehow I overcome. All the time, I'm moving forward. Perhaps a little behind my fellow players. But I'm advancing all the same. 

There are even days, sometimes months, when as if by magic the universe seems to roll me double sixes and I shoot up ladder after ladder without a backward glance. It seems like I'm on the cusp of winning and I can hardly believe my luck.

Then all of a sudden I glance down the path and there's a gurt big snake sunning itself in my way. Before I know it, I slide all the way back down its slimy back and find myself further back from where I started.


When these setbacks occur, as they inevitably do, it's hard to not regress back to childhood and behave like a toddler. You want to sulk and have a tantrum. You wish you were playing a different game. You're angry that everyone around you seems to be doing better than you in their game, having more fun. You shout and bang your fists, hoping to knock their counters off the board but this only serves to set you back even further. 

Of course, there is another way. Instead of being a bad looser and spoiling things further, you can keep your calm, pick up the dice and roll again...

sleepless

My nights have been restless of late; dark shapes clouding my otherwise blue sky dreams.

My calls through the thick ink of night snap him to attention and without recollection of space or time he is tangled in her damp hair. He wraps me in his arms and whispers in my ear until he feels my heart return to its natural rhythm.

His breath graces my neck and my body softens. Sleep beckons me once more and he gently returns to his half of the bed, my warmth still on his chest. These are the ways he knows how to soothe my nightmares. Treading slowly with me. Holding tight. Making new dreams.

I hope that these dreams, this fog, will not haunt me for long. We hope they are merely a product of this rocky patch now; a mind leaping ahead whilst its accompanying body lags behind out of breath from the exhaustion of being.

fatigue

Lately, fatigue has once more been a heavy weight around my neck. Not the everyday tiredness that comes from leading a hectic life. Nor the Sunday morning sluggishness and lethargy be-known to students brought on by one too many sugary cups of coffee, frequent late nights and not enough fresh vegetables. Rather an exhaustion that greets you when you wake in the morning, that a good night sleep won't lift. A tiredness so consuming it seeps into your bones, that could drain away all happiness if you let it do so.

the things that keep us up at night

It's not the ache behind the eyes,

the loss of appetite or

the painful limbs.

The pallid skin or the freezing hands.

Neither is it the lost years.

The exams left untaken,

The high heels left unworn,

or the broken dreams. 

Rather, it is the perception of others,

their lazy comments or ignorant

judgements. Their unwillingness

to understand. To accept.

Their incessant questions and their hurtful words

muttered under their breath, which we

broach without comment.

These, not the fatigue nor the pain, are the things that

eat away at our lives, that mark us out

that keep us up at night.

fortune telling

Recently, I've begun doing what I've warned myself against: instead of living in the moment, I've slipped back into dreading the future with ME./CFS. When tiredness or aches hit, I instantly imagine myself unable to work or to walk, bed-bound once again...wearing nothing but pyjamas.

Some days it gets so bad, I sink into a sort of a mental paralysis, my mind caught up in a whirlpool of negative thinking and anxiety. As I wallow in the mental mud, I spend more and more time in that future. And that future terrifies me.

One week in mid November, it snowed all week. By the weekend, the clouds had parted and the sun shone bright and clear. We got our rucksacks ready and Nico took me up and out into the mountains. We strapped on our skis and headed up to the gentle slopes around Béderet. As we were inched up the hill, weaving between the ski-lift pylons, I effortlessly slipped into a state of relaxation. Concentrating on my breath and my footfall, I found myself sinking into a rhythmic trance as I put one foot in front of the other.

 
And then it came to me, my life in focus. All the good things. I am connected to this Earth, to this person I am following. I am breathing. I am moving forward. I am alive.

I may not have full health, but I have a little. I may not be able to work full time, but I can work a little. Some days it might feel like I'm getting nowhere, but when I look behind me I can hardly believe how far I have actually come.

I determined right there and then out on the hill, to spend my time more wisely.

When we go back country skiing, I cannot ski properly if I am worrying about what is to come. I have to let myself go, live fully in the moment. Embrace the unknown, and the downhill. Trust the person I'm skiing with. Trust my body. Trust that it will be ok.

When I am back down in the valley going about my daily life, I cannot tell my fortune. I can't predict the future. Those mental images that so terrify me are just that, only images. But I can count my blessings, be grateful the lot I do have, rather than weeping over the little that I don't have.

 ‘The miracle is not to walk on water. The miracle is to walk on the green earth, dwelling deeply in the present moment and feeling truly alive.’  

~Thich Nhat Hanh

I can endeavour to "dwell deeply in the present moment...and feel truly alive." 

sleepless nights

What a fortnight, what a week...

I've been overwhelmed with work, overwhelmed with that mind-numbing fatigue.

Lessons to prepare, verbs to conjugate, translations to hand in on time.

But worst of all: insomnia, aching muscles and fatigue have been holding me in a headlock. I've tried to break free, but it's impossible. 

Sleepless nights ... 
Sleepless hours ...

Sleepless hours tossing and turning, trying to not get overwhelmed by this rhythm that seems just a little too tight for comfort at the moment. 

Fortunately, there are good friends to come for tea. To distract me with their sewing projects, their swelling bellies, their imminent weddings...

Fortunately, there is knitting to be done, a pair of slipper socks for my cheri to be finished. Whether a row or just a single stitch, it helps me feel like I've achieved something with my day, no matter how insignificant...