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.

and there was that time

 

And there was that time in

the last days of summer.

When we sat beside the ocean,

you and me, 

listening to the waves

pounding against the shore.

And I felt the spray on my cheeks, and 

I felt your hand in my hand. 

And I was not afraid of the roar.

And as we sat beside the ocean,

you and me, 

watching the sun sink into the briny depths.

I felt it's last warmth on my cheeks.

And I felt your hand in my hand.

And so I was not afraid of the dark. 

And later, as we settled down to sleep

you and me

beneath the pine trees,

I felt the pounding of your heart from your chest to mine

I felt the warmth of your skin on my skin 

I felt your hand in my hand

And I was no longer afraid.

Already five (and a half!) years together, you and me. Not bad, hey?

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...

my breath

Rough grass beneath our feet. Forest paths and fields of scree. The ceiling so high, so inviting. And then this moment. This smell. This taste. These mountains in my lungs. My muscles unfurl. My chest rises and falls. The clouds, the sun, the earth. My breath.

storm clouds

 
Truth be told, things have been a bit of a struggle of late. I've been struggling to accept how things are to accept myself and what I'm facing, this current relapse.

Knitting helps unravel my anxieties. Spinning helps quieten my racing mind. He helps in every way he can think.

But despite these, it's hard to not get downtrodden. To wonder when my life will actually begin...

In those quiet moments, sometimes I wonder, when?

All around me, dear friends are getting engaged, starting new jobs, developing their careers, becoming mothers, preparing for marriage. No matter how hard I try, sometimes it's hard to feel genuine happiness for them as their lives progress and their opportunities widen because it feels as if my own life has ground to a sickening halt.

But whilst I cry over the loss of my livelihood, chances of a "proper" career, the absence of babies, it's easy to forget amid all my suffering that my dear friends around me also have their own struggles. Whilst they might not have suffered the loss of job, the indignity of having to be taken to the bathroom by their boyfriends, in my own way, they face their own storms.

Loosing a beloved parent to aggressive cancer or a failing heart. Living half-way across the world from a husband because of over-strict immigration rules. Waking up one morning to realise they are stuck in the rate race. Having to cope with long-term unemployment despite having a top degree from a top university. Having to face the prospect of long-term single-hood.

Yes, they do not know my struggles intimately....but then, I don't know their suffering either.

But what I do know if this. My own life would be much more empty and harder to bear were I to cut myself off from those friends...

At least together, we can help one another brave our own particular storm clouds.

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.

letting go

If my eyes follow the lines of my arm as it extends beyond my body, they arrive at my hands. Both closed tightly.

If I were to peek into one of the hands, inside I would see everyone and everything I hold dear; my family, my beloved, my friends. But also my personal successes, big and small, my precious memories. 

Now if I were to examine the other hand, I'd see the fingers are clenched so tightly over into the palm, the knuckles are almost white. In this hand sit my life-long and more recent dreams. My secret longings, my most bitter jealousies. My joys but also my sadnesses. My hopes for the future but also my present despair.

With my fingers of both hands wrapped so tightly around these, I can open neither my hands nor my heart to anything else. As if I'd somehow loose myself if I dared to offer them up.

All that I hold in both these hands are part of me. I guard them jealously, unwilling to let them go. And yet.

No one is asking me to let go of my loved ones. No one can take away all that I have achieved. But perhaps I am hanging on too tightly to the other stuff?

If only somehow I could have the courage to loosen my grip, to let go of one handful? Then one day I would wake to find an open palm resting by my side, free to be filled with other possibilities. 

managing tension

 

The early morning scent of brewing coffee. The first rays of golden light out on the balcony. The fleece in my hand is bouncy, soft. Like a tiny fluffy cloud. It feels exactly like it belongs there. My head starts spinning with a hundred million billion willion thoughts. Now is the time to bring them out. Let them breath. With each turn of the treadle, they tumble out. Thoughts only. Dreams. Little sadnesses. As I draft the wool, the wheel twists the fibres together. My thoughts twist into the thread, wind onto the bobbin and are held in place by the tension between my hand and the wheel. It is time to let go, to put tension and stress to better use. It is time to make yarn.  

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.

making lace

It's been years since I properly made some lace. The last time would have been sometime in 2006, just before packing my bags and heading off to University. There was barely room in my broom-cupboard sized study bedroom for my knitting needles and yarn. Needless to say, my bulky lace-making equipment was packed away for another day.

In between the rain showers this week-end, I snatched some time out in my parent's garden to get out my pillow again and throw some bobbins around. 

Traditional bobbin lace uses fine threads wound around wooden bobbins and much repetitive labour to produce fabric of great intricacy.

Lace-making is truly a labour of love. To craft even the most simple length of trimming requires great doses of patience and concentration.

Progress is slow, sometimes less than a quarter of an inch per hour, depending on the intricacy of the design, the fineness of the threads. 

From the pricking to the winding of the bobbins and finally to actually making the lace, seeing a design slowly unfold on the pillow is always a source of great joy. Thread by thread, pin by pin, the beauty of the lace reveals itself little by little. 

On-going studies at the Harvard Medical Institute for Mind and Body Medicine indicate that repetitive activities such as lace-making elicit the "relaxation response" which alleviates stress and allows the brain to set aside intrusive thoughts.
 

In the same way knitting and spinning seem to magically calm me, I felt the beneficial effects as soon as I picked up my bobbins again. Working at my pillow, I could feel weeks and months of stresses and strains fall away as soon as I methodically worked through the design.

I do hope that this time, I'll be able to find space for my bobbins and pillow when I head back to France in a while...

spinning out anxiety

The past few days have been emotionally charged and I'm doing my best to guide myself into a new, better rhythm. As always, it's much easier said than done.

At the start of the month, I had to give up working for the time being. Whilst this new normal will be better in the long-term, for the time being, it is rocky. Fears about money, the future, and especially my own self worth as a disabled person are clouding the horizon and making it hard to see beyond this situation. And poor Nico is witnessing long, passionate displays of sadness, anger and anxiety. Sometimes (unfairly) directed at him.

In the aftermath of a storm, I can see how it's difficult to find that balance between indulgence and comfort. He continues to express his endless, wholehearted love. And I continue to express my frustrations and damn down-hearted state. Usually, he would encourage me to let go of my anxiety by walking; pounding it out on a mountain path rather than dissolving in a flood of tears. But walking is hard for me at the moment. Hard physically, hard emotionally. So if my anxiety can't come out in my feet, perhaps it can come out in my hands instead?


About a month ago, we found a beautiful, old double-drive spinning wheel. Although it was actually for my birthday, we've been getting to know each other in the quiet moments.

I felt like I'd reached a point where I needed to find some release instead of getting caught up in my sadness. Starting to spin my own wool is helping me to do just that. Learning to find that gentle equilibrium between enough and not enough tension. Learning a new skill is helping me focus on the task in hand, and not worry about the rest.

another year

 

A month ago today, I turned 27.

Waking to yet another poorly day, I'm struggling to find any hint of improvement; my body is still aching, I am still exhausted. The calendar tells me that I am another year older. The warm breeze through the open window confirms the seasons have changed. And yet I am still sick. The urge to kick off the bedsheets once and for all is great.

I'm back to square one at the moment, large stretches of the day spent alternating between our bed and the sofa. Yet all around me, friends are spreading their wings. On the horizon for them: babies, weddings, more rungs on the career ladder, adventures in sunnier climbs. If I think about it when I'm tired, I'll only let the green eyed monster of jealousy into my heart and that won't do me any good at all.

So it's best to focus on other things, closer to home. From here in my bed, my mind sets sail on an adventure. Wild garlic down by the river. Picnics in the woods. New woolly projects on my needles and wheel. With a conscious effort, I can let happy thoughts flood my daydreams. Longer days are imminent and I look forward to sunny ones pottering around on our balcony. There is much to mourn. But there is even more to be thankful for.

untangled

Another exhausting week at work, where there is nothing to do but keep going, in spite of the awful fatigue.

It leaves me wondering what I can should do to get on the road to recovery. Perhaps I should take a few weeks off to recuperate a little bit? But that would leave my students without a teacher, and me without an income. I feel so powerless, so lost faced when faced with this dilemma...

Thankfully, I have plenty of small, manageable projects to distract me between siestas. They occupy my fingers, and keep my mind from worrying too much. One of my favourite projects of the week has been untangling the mess of knots from my newly acquired yarn from last week-end, bringing order and calm to my recycled yarn stash.

If only it were so easy to unravel my dilemma....

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...