graduation

July 20th 2012. Graduation Day. Truly one of those "once in a blue moon" sort of days.

A day we thought would never come.


It was a day of euphoria for me and my family. Rightly so. We had come so far together, overcome so many difficulties.

I can remember on the day being washed along in a tide of immense and deep founded joy: the relief at having finally finished, the pride of achieving First Class Honours, the fun of swishing about town in my billowing gown, the support of my parents who helped me to get there, the encouragement of my big brother and sister who had blazed the trail long before me.

Now when I think back to that day, the thing that makes me happiest is to look at the picture above, to see myself, almost indistinguishable in the crowd. Sat beside my peers, not in a room all on my own.

For once looking normal, just like everyone else.

taking the waters

Summer pasture lands just above Barèges, July 2010

And finally,
the big day comes.

I get up later than expected from my after lunchtime siesta and trundle over to the Tourist office in our village. The bus for the thermal baths is slowly filling with patients when I arrive ten minutes later. 

The driver takes us up the Barèges valley, along the road to the col du Tourmalet. We overtake panting cyclists wishing to measure themselves against the greats. 

Ten minutes later, we arrive in the spa of Barège, a long, thin village clinging to the hill slope along the river Bastan. The thermal baths have been here for over three hundred years. 

French people have been coming here every year to take the waters. To be taken care of. To find healing and peace in the shadow of the mountain, beside the bubbling brooks and thermal springs.

And finally.
Today it is my turn.  

waiting for the baths

I don't exactly know how long I've been waiting for something. Anything. A month? A year? More like sixteen...

The new doctor has prescribed me a very French solution for my condition - a three week course of balneotherapy (treatment with thermal water).  

Despite the French name - "la cure" - I know a month in thermal water won't cure me. But it might make me feel a little better. To finally be taken care of. To be listened to. Understood. Accepted.

Next week will be D-Day.

living without

Casting my eyes over the plate I see a colourful landscape - the steamed courgettes, the quinoa and split peas, the nuts and the seeds, the buckwheat and chestnut flour bread. Not an ounce of meat. Not a grain of wheat. Not a drop of milk.

Not so long ago, I wouldn't have thought it possible to make something so delicious with so many missing ingredients. Whilst we've eaten pretty much vegetarian for over four and a half years and our diet has never been heavily reliant on processed items, we had a handful of ingredients that always made the top spot on the weekly menu.

And so we've been exploring different ways of living and eating, starting by abandoning those French staples of bread and cheese.

Three months ago, we decided to finally take the plunge and see whether living without gluten and dairy would make living with M.E./CFS and Fibromyalgia any easier. We decided to overhaul our diet not so much in the hope of a cure but rather as a conscious decision to choose a path of food as nourishment, possibly even medicine.

The initial fallout, both physical and mental, was not pleasant as our bodies readjusted. Without the shop bought cakes or biscuits when the afternoon energy dip came, I had to reach once more for a piece of fruit or a handful of nuts.

Breakfast time was initially the hardest and I cursed as food preparation became laborious. I felt especially burdened by the lack of ingredients, choices and alternatives available to us here, halfway up a mountain. Gluten and dairy free products are not as developed or easily available here as in the UK elsewhere and so for a few weeks we were having to make everything from scratch. In order to keep the fire of change burning, we expanded our modest library of wholefoods literature. And most importantly, we kept talking.

It certainly has been a time of much reflection and discussion.

To be continued...

diagnosis

Early July.

I'm sat in the doctor's consulting room, a swarm of butterflies fluttering around my stomach. On my lap, a pile of tangled threads, my knitting lies forgotten. In my hand, I grip the piece of paper in my hand tightly. In the years I've been sick, I've never particularly liked going to the doctor. It's even harder doing it in French. 

I'm beckoned into the consulting room and the doctor takes the blood test results from my hands, scanning them quickly with a knowing eye. I'm invited to hop up onto the bed, where she proceeds to take my blood pressure, before poking and prodding me in a variety of places on my body. Some illicit a dull ache, whilst others are particularly tender under the pressure from her fingers. She signals for me to return to my chair opposite her. She taps away at the computer for a few moments before asking me questions about my sleep patterns, energy levels and general feelings of well-being.

If you are British and you've never had the pleasure of going to the Doctor in French before, remind yourself what it felt like taking your French GCSE oral exam. Except that the symptoms you are describing are real (and in the case of M.E./CFS, the brain fog can make your thinking less than clear), not icons on a printed examination card, and the person you are talking to is both your local GP, not your French teacher.

Because after struggling to find any support, medical or otherwise, for the past two years, I finally dragged myself out of the house to try a new doctor earlier this afternoon. I went into the surgery a nonchalant English girl with a self-diagnosed M.E./CFS relapse, convinced all she needed was some bed rest and a lemsip.


Forty-five minutes later, I emerged from le cabinet medical looking just that little bit more gallic thanks to a confirmation of Syndrome de Fatigue Chronique, a diagnosis of Fibromylagie...and crucially, a list of prescriptions as long as my arm...including "une cure".

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...