ME & Me shares a monthly life story of someone living with ME in Yorkshire. Holly’s story is the third instalment in the series.
Holly Moscrop, 25, from Leeds, is a farmer battling a debilitating disease. Diagnosed with ME at 16 years old her world was turned upside down. Holly went from working on the farm to being trapped inside her room looking at her families animals through a window when her health allowed. Thanks to gaining the support of experienced medical professionals, her condition began to stabilise and she is now well-known online as ‘One Girl and Her Cows’.
It wasn’t always this way…
10 years ago, I was your average, academic, active 15-year-old girl… if that average girl was always found in clothes strewn with hay, mud and horse hair.
I was extremely lucky to grow up on the farm I still live on now, spending every waking minute outside, usually on a horse. I’d always known I wanted to be a Farmer, and had life all planned out, including which agricultural college I’d attend, before I even got to high school.
I was strong, used to spending nights stacking hundreds of 25kg bales of straw or hay by hand each summer, and mostly healthy. Although, looking back, there were many warning signs of that health falling away.
I’d always been sort of boom and bust with everything, but I’d always pick back up again. Until I didn’t.
Fast-forward to the beginning of 2012, and I wasn’t quite that same girl. I was picking up one illness after another, never quite recovering properly after each one.
Totting up weeks of missed school and trying to pretend everything was fine (because denial and stubbornness is always a recipe for success…).
Months went by, with lingering symptoms that were only getting stronger, and then, the day after I turned 16, my body very loudly told me to stop ignoring it and I almost collapsed at school.
I never made it back to school, and instead, spent the next year having what felt like every medical test under the sun. Getting more ill with every appointment, with a symptom list that stumped everyone.
How can a visibly healthy teenage girl with mostly normal test results be so ill their arms sometimes aren’t strong enough to lift a fork to their mouth and they’ve gone from spending the whole day outside, to never leaving their bed, in the space of just 6 months?
At first, I was diagnosed with Post-Viral Fatigue Syndrome, and told to go for a walk and get some fresh air… Luckily, “going for a walk” was way past my capabilities by the time I ended up sat in front of that doctor; I couldn’t even walk up the stairs. After the initial delay and disbelief, I was then looked after by doctors who did all they could to get to the bottom of it.
Meaning that, at the beginning of 2013, I was officially diagnosed with Severe ME, as well as ME’s good friend POTS.
It unfortunately takes a lot of people many more years to get a diagnosis, or even belief or empathy, which has to change. By this point, I was mostly bedbound. Every day was filled with severe, bone-crushing exhaustion, painful sensitivities to light, sound and movement, sore throat and flu-like symptoms, lack of temperature control, constant pain, cognitive problems, and many more symptoms, which all got much worse, for a prolonged period of time, after any exertion (even eating), which I would come to learn was a hallmark symptom called Post Exertional Malaise.
After being diagnosed and gaining the support of experienced medical professionals, my condition began to stabilise. Over the years, thanks to the privilege of being able to pace and rest, having a brilliant support network in my parents, and access to energy-saving aids and adaptations, and a hefty dose of luck, I’ve seen tiny, gradual improvement. For which I’m forever grateful.
At the beginning…
I was in total denial that this could be anything but a bump in the road, but over the years, I’ve grieved for the life I thought I would have, and mostly found acceptance for the one I’ve got. It would be 5 years since my diagnosis before I entered the garden again, let alone the farmyard, so we had to get creative with how to keep me involved with what I loved.
We set up cameras in the cowshed and farmyard, that fed back to a tv in my bedroom. Whenever I was well enough, I could see everything going on outside and watch cows to my heart’s content.
Our cows spend all winter in the shed and calve inside, so each spring, I’m on midwife duty, watching for potential problems. Gradually, I was lucky enough to experience improved cognitive functioning, and over the years have gone from being able to read a children’s book for 30 seconds at a time, to being able to take on the admin side of the farm- that mountain of paperwork is something I never thought I’d be so excited about!
My life still looks vastly different to how I envisioned, and sometimes, the gap between where I am and where I thought I’d be is overwhelming, so I’ve learnt to try and live in the present and find joy in the little things, so that my happiness isn’t tied to how well I am or what I’m able to do.
Nothing is guaranteed when it comes to ME, and everything can change, for worse or for better, in an instant.
I’m well aware that I’m one of the lucky ones who has experienced improvement, though I’m still housebound/farm-bound and all the symptoms are still there, just at a lesser severity than they were, most of the time, and I can do more before they get significantly worse.
My life is sort of a high-stakes game of give and take; my body lets me do some things, then I let it rest while it protests… with the odd curveball thrown in to remind me ME is in control.
I spend the majority of my time in my bedroom; which is basically a flat, as we’ve filled it with a whole manor of weird and wonderful things to enable me to take part in more of life (think bedroom/kitchen/office/craft room… there’s even a mini oven!).
At the moment, I make it outside, to watch (and sometimes help) cows calve or help move them (gap-blocking is a speciality), lunge my horses, or just take in the outside world, around twice a week for a couple of hours, using my outdoor electric wheelchair which I absolutely love, even if we do sometimes get a bit stuck in mud and manure.
One Girl and Her Cows
Part of staying connected with the farm and finding a way to be involved in agriculture was launching a blog, One Girl and Her Cows. I share stories from our farm, and my life, as well as helping teach people about the origins of their food, to try connect more people to agriculture and the outdoors who maybe don’t have the same view out of their bedroom window as I do.
I know how much of a lifeline nature can be, even if only seen through a screen when your world consists of mostly four walls, so I try my best to provide that for someone else.
Breaking down the stigma attached to mobility and daily living aids, hidden disabilities and ME is also part of my blog. I hope beyond anything that one day, no one will ever be told they’re too young to use a mobility aid, or hear “I don’t believe in ME” from a medical professional who’s supposed to help them.
I’ve been so fortunate to have access to home appointments from a specialist occupational therapist whose advice has helped immeasurably. I know many others who’ve instead had the complete opposite, and who’ve been told to do things like exercise, that caused incredible harm, or were only met with disbelief or turned away as too severe to be helped.
It shouldn’t be a postcode lottery when it comes to healthcare, everybody should have equal access to knowledgeable, helpful, caring professionals.
It’s hard enough living with a disease that dictates every aspect of your life without also fighting for the help you deserve, that doesn’t cause you harm, and fighting ignorance from others. The new NICE draft guidelines and Decode ME trial look promising, and I really hope they start a ripple of change for everyone with ME.
We need more awareness, understanding, education and biomedical research.
Want to hear more from Holly? Check out ‘One Girl and Her Cows’.
If you’d like to share your life living with ME in the ME & Me Series please do get in touch below.