Share a story – Emily Bailey

Emily has had ME since she was nine years old. Her condition has fluctuated: she has had periods of mild ME and periods when she has been housebound, rarely able to leave her bed. Emily has written a series of articles for ME Essential on being at university with ME; she also writes about travelling with ME at muchadoabouttravelling.blogspot.com. You can follow her online @byemilybailey on Instagram and Twitter.

This is a story of hope.

I have had severe ME. I have spent Christmases, birthdays and every day in between in bed, my body inhabited by this illness, this parasite, this thing that took away who I was. I have watched the days and weeks fall away from me, unable to look after my own body, dependent on others to make it through the day. I know the importance of these stories. The stories proffering understanding; the stories asking for help and raising awareness of the reality of ME, of everything that it takes away. I have needed these stories.

But I’ve also needed another kind of story: a story of hope. Lying in bed, watching the life that I had pictured for myself evaporate before my eyes, I’ve needed hope that something, anything, might get better. I’ve needed hope that there are people with severe ME whose lives have improved. I didn’t need stories of miraculous returns to perfect health: they felt completely unattainable to me, lying in bed, struggling to hold a conversation. But, I needed stories that could make me hope in something.

My story isn’t one of extraordinary recovery. I haven’t gone from spending the majority of my time in bed to running marathons. In fact, I can’t remember the last time I ran; just the thought of it makes my body recoil in apprehension of the payback. But my story is one of improvement, of adapting and stabilising. I am not “better.” I need help to dress, to bath and wash my hair. I can’t face noise in the morning, a simple “hello” often feeling like a jackhammer on my skull. Post-exertional malaise is a constant beside me, a companion I rarely forget about. And yet my life is far from the one that I was living a few years ago, housebound and hopeless.

I am now a university student, one who finished her first year with some of the highest grades on her course. I am a culture nerd who is making plans to visit museums and galleries on her mobility scooter whenever her health allows. I am someone who opened a jam jar for the first time in years last week (yes, that is equally as exciting as the previous two accomplishments; opening jam jars is really hard, particularly when your arms spend most of the time feeling like jelly). I am also a devoted Bon Jovi fan who saw them perform at Wembley Stadium this summer (believe me, the planning and pacing for that one was intense; as was the recovery). Seriously, I saw Bon Jovi; that was my life’s bucket list, just that one thing!

ME took a lot from me but, slowly and surely, I have begun taking things back. My education, my hobbies, my confidence; all of these things that felt so distant from me are now back in my grasp.

As I said, this isn’t a story of extraordinary recovery and it hasn’t been easy. It’s a story that owes an awful lot to many people (the counsellor that I saw to deal with the impact that ME was having on my mental health; the private consultant I am lucky enough to be able to see who actually prescribed me medication to help with my condition, a novel approach after years spent under the NHS; my family, friends and many other people along the way). It’s a story of careful plotting, planning and pacing, creating a stable baseline that I can operate from. And, maybe, it is a story of hope. I don’t have an ME-free life and perhaps I never will, but I can call this life mine again, not ME’s, and because of that I am hopeful.