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.

despite

Five years in, aged sixteen, I went to an NHS run M.E./CFS management clinic.

Going to the clinic helped me to realise that trying to define M.E./CFS is almost as difficult as trying to treat it. No two patients are alike, just as their personal experiences of the disease are never exactly the same.

But at the clinic they taught us to look beyond our differences in age, severity and experience and support one another through our difficulties.

The clinic didn't offer any miracle cure or radical treatment programme. Just the tools to better understand and therefore better live with the condition. Despite the condition.

Acceptance. Management. Perseverance. Pacing.

I was the youngest participant by a long way and, I'm not ashamed to admit, the class swot. I believed whole heartedly in the programme the therapists presented to us over the course of six months.
I knew that it wouldn't cure me, but I hoped that it would help me to recover enough to be able to manage a meaningful life. (At the time, a severe relapse had dragged me down to around twenty per cent functional ability).

It was hard, but I did my very best to implement every aspect of the programme. To make managing my condition second nature. Balancing activity with proper rest. Ensuring good sleep hygiene. Mindfully avoiding stress. Eating well. Doing something uplifting at least once a day.

I've been trying to live by the clinic's guidelines ever since.

Most of the time, the CFS symptoms play ball and I've been able to manage them fairly well. But every now and then things take a turn for the worst. I might have done everything my occupational therapists had said to improve my dysfunctional sleep or erratic energy levels. But CFS doesn't care that I've followed all the rules and a setback happens.

But ever since I went to the clinic, I've been better prepared to face these setbacks, to know that it is possible to get back, if not to a place of absolute recovery, at least to a place of greater stability. 

Which for me, is probably one of the most crushing aspects of this horrid illness. 

in between

After that, slowly but surely, all traces of the world I had known before started to evaporate.

The colour drained from my life.

I stopped going to school. Stopped going to Guides. Felt dizzy when I played the flute. Couldn't ride my bike any more, couldn't swim, could hardly even walk. 

My world shrank to the four walls of my bedroom and I had to get used to a new sort of normal.

Bed-bound, house-bound. No-longer-anywhere-bound.

Washed by my Mum. Propped up in bed. Wheelchairs. Disability Living Allowance. Aching limbs. Tender muscles. Disturbed sleep. Pale skin. Poor circulation. Brainfog. Never ending fatigue.
Forgotten by friends. Tired, so very tired.

This is how it was in-between. Those were the pyjama days. 

They seemed to stretch on into eternity.

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...

to and fro

Following the repeated bronchitis, I quickly experienced extreme tiredness. At first it seemed like a long recovery from my respiratory infections. But when everything from brushing my teeth to getting dressed began to seem like climbing a steep mountain, we realised that my condition was more than common fatigue.

For a year or so, I was sent to and fro from specialist to specialist. They prodded and poked, x-rayed and took blood. Sometimes they were kind and understanding. Sometimes they were very, very cruel. Often they were just aloof, detached, distant.

"She must go back to school." They said to my parents every time.

Eventually, they diagnosed M.E./ CFS.

They told my parents that, all being well, I would eventually "grow out of it".

Then they sent us on our way, to deal with things alone. 

the beginning

1998.

In the autumn, I moved up to Secondary School. I was starting a new chapter of lifelong learning and my eagerness knew no bounds. In the classrooms where I forged new friendships, encountered new things and made new discoveries, I also unwittingly invited into my life a motley crew of germs. Coughs and colds, tummy bugs and sore throats were the waves of illness that battered my body in those first nine months in big school. I just about made it to the summer holidays by the skin of my teeth.

September came round again. We braced ourselves for the next bouts of illness that would inevitably crashed at our doorstep. We did everything we could to stave off the tide, but to no avail. I managed only six weeks. Unbeknownst to us, that was the first year of the sickness-wellness merry go round that would shape my adolescence...and ultimately my adulthood.  

overdoing it

It had become a familiar pattern. At least once a week I'd miss one of my morning or afternoon resting slots, choosing to begin a new project or lingering on a task instead. Often this missed rest slot would pass unnoticed and I'd feel a secret inner feeling of glee as I was able to carry on regardless. "See, no need for resting after all. What a waste of time..."

Often it started with one missed rest. But then the following day, I'd skip all rests. And perhaps do an hour or two too much of teaching. Or "forget" to go to bed early. Other times, I'd "forget" I needed to turn the computer off after dinner and slowly wind my body and mind down ready for bed. This would then of course throw my whole rhyme out of kilter, muck up my sleep pattern and make me become exhausted and anxious.

The new doctor is of course right. 

Somehow, I must break this cycle.

Somehow, I must slow down.
Somehow, I must learn to listen to my body again.

It's just that for some strange reason, in my mind listening to my body equals acceptance of the situation, which somehow suggests giving in to this bothersome illness.

{Yummy organic veggies from the weekly farmer's market}