ME & Me Series: Lucy’s Story

It was the beginning of my second year of A levels when the exhaustion first hit. I was used to a level of tiredness before I reached this point; I had been diagnosed with depression and anxiety at 14 and the toll of poor mental health combined with studying had already impacted my A levels, I’d dropped down to a single A level and picked the rest up in my second year with the hope of taking 3 years to get 4 A levels instead of the usual 2 years.

But within a month of full-studying I was no longer coping, coming home in a haze of exhaustion, in tears at the thought of struggling through homework after barely making it through the day. My friends pointed out that this was not normal and that although A levels were tough, they shouldn’t have been causing the symptoms I was experiencing.

I went to my GP and I was extremely lucky as my doctor was already aware of CFS/ME (something I later learned to be quite rare from the experiences of others with this condition) and after a month or so of various blood tests and medical examinations came back normal, I was diagnosed with Chronic Fatigue Syndrome at 17.

At the time, it felt like my world was ending…

I was perpetually feeling like I’d ran a marathon after an all-nighter despite a full nights sleep, my mental processes turned to molasses (which I soon learnt was called brain fog) and everything ACHED.

My mental health, which had finally stabilised after 3 years of on and off therapy and medication plummeted again, and I had to go back down to one A level, struggling to attend the few classes I had left at my college.

My social life dried up, and I felt incredibly alone. My age was inconvenient: by the time I was referred to NHS specialist groups for teenagers with CFS/ME I was already 18 and couldn’t relate to the panicked 15 year olds scared for their GCSEs.

As someone whose health even at their worst never resulted in me being completely bedridden I felt like an imposter amongst the people younger than me who were suffering so much more.

My life turned into days when I struggled to get out of bed just to study and whilst I’ve never been a very active person the necessary slowing down of my lifestyle caused steady weight gain, something I still struggle with.

I spent the next five years after my diagnosis doing my A levels one by one, either online or in a sixth form college. Adult resources for treatment weren’t helpful to me either, I was referred to a specialist in the middle of London that I was often too exhausted to go see and encouraged to ‘pace myself’, and returning to normal therapy when needed was hard as I’m not sure my therapists were equipped to help me manage mental health with a long-term chronic condition.

It’s been two steps forward, two steps back most of the way, with my health often unstable. Whether it was a CFS/ME crash, mental health crisis’, or when one of my parathyroids decided to murder me with extra calcium (known as hypoparathyroidism; resulting in a year of hospital visits and extreme nausea that culminated in a surgery that left me basically unable to move off of the sofa for two weeks) – I’ve grown accustomed to things going wrong with me.

Whilst everything has been more or less stable despite a global pandemic in the past year and a half, the best I can find myself feeling is a cautious optimism for the future. CFS/ME has been an over-looming spectre throughout that I’ve had to learn to co-exist with. I’ve come to accept that despite my slow improvement over the years I may never truly feel ‘normal’, and I feel symptoms such as fatigue, brain fog, memory loss that makes exams very fun and various aches and pains daily to different degrees. My least favourite symptom so far is definitely overheating, which I didn’t even know WAS a symptom until looking into it, and makes summer my absolute nightmare as I can’t walk two steps without melting into a disgusting mess of sweat (I know it’s gross, sorry).

This isn’t to say I had it all bad, however…

Even on days when I’m too knackered to play, friends have always been happy to stream what they’re playing so I can hang out and watch despite having far too much brain fog to contribute to any chat in a meaningful form.

I also finally made it to university at 22, and despite managing to choose arguably the worst year to begin my uni experience, my year at Uni of Leeds has been an exhausting yet rewarding experience.

My CFS/ME is mild enough now to the point that on a good day I can socialise and go out with friends (even if it means spending the next day resting) and I get to study a subject I’m genuinely interested in, despite how much I complain about it near deadlines.

Writing was the one thing I’ve always been good at, and despite the brain fog being an annoying detriment to my skill level I pride myself in my ability to churn out a fairly passable essay at the last possible moment. In terms of the future I’m terrified for after uni, as my health has prevented me from ever working a job, and I’ve come to terms with the fact that I’ll likely never be able to do a full days work. But I’m determined to at least make somewhat of a life for myself and to not let this condition prevent me from living my life to the fullest, or at least as full as possible with this illness.