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.