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.

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.

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.  

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.

pieces of M.E.

I first fell ill when I was eleven years old. It has been quite a journey since then.

For many years, my life was at a standstill, passing me by as I watched on helplessly.

For many years, I wore nothing but pyjamas.

 

Somehow, against all the odds we soldiered on. 

There were times when the illness was all-consuming. But also brief periods of better health, when I was able to do things like my peers, all be it at a much slower pace: Study a French BA part-time at the University of Bristol. Spend 18 months abroad doing work experience as a part-time language teacher. Complete a language teacher training course. Meet and fall in love with a wonderful French man. Move back to France to live permanently.

In 2012, aged 25, I graduated from the University of Bristol with First Class Honours. The euphoria of that day, where I seemed to have overcome my difficulties and conquer my own personal Everest made me believe that anything was possible. That somehow, the mere fact that I had "done my time" with the illness and still managed to get a degree would mean that now was the time I would finally "grow out of it" as everyone had always expected me to...

Now at the age of 27, life seems to have once again ground to a standstill. The past twelve months in particular has been very tough, as increasingly poor health has forced me to stop working as a self-employed linguist for the time being.