Millions Missing - Aerial and ME
It began with some bad advice from a therapist.
She was nice enough but she didn’t seem to understand me. I told her about the problems in my relationship. She didn’t recognise it as abusive and instead told me to try and ‘do more things on my own’ to ‘increase my confidence’. As an autistic introvert (who was pretty confident in everything except my horrible relationship) I was constantly doing things on my own. I loved doing things on my own. So the advice was completely redundant.
“My daughter goes to a dance centre nearby - do you think you could go to a dance class by yourself?”
If I hadn’t been so keen to learn about the dance centre, I’m sure I would have involuntarily made a face. I’d told her I enjoyed dancing and I had gone to many dance classes by myself over the years. As well as enjoying it as an activity, I love the anonymity of a group of strangers. Obviously not if I have to talk to them, that’s horrible. But if we’re all just there to do an activity, perfect. No inane chatting, just me doing something fun, with people I’ll never have to see again. That’s my kind of socialising.
But instead of explaining this, I just said yes.
As it turned out, the dance centre also held aerial workshops. I didn’t know what ‘aerial’ was exactly, but the website showed pictures of a trapeze and ropes and that looked great to me, so I booked myself in.
As soon as I started I loved it. The feeling of being upside down, suspended in the air, was sensory heaven. And despite my slight trepidation of climbing a rope, I scooted up with no problem at all. I was good at it!
When I got home I was sore and achy and had blisters on my hands. I immediately went online to book all the upcoming aerial workshops. They were infrequent, and I did as many as I could.
When I left university and moved to London, I happened to find a twice-weekly aerial class 10 minutes walk from my flat. It was meant to be. I started doing relatively regular classes there, and felt like I had finally found a form of exercise that I loved and would stick to. I would watch the advanced group with admiration as they did spectacular tricks and was vehement that one day, with enough practice, I’d be able to join them.
But I always seemed hampered by my energy. At first, it was depression. I went through a period of pretty bad depression when I first lived in London and sometimes I barely had the energy to get down the stairs, let alone shimmy up a rope. But when I could muster it, I went. To my disappointment, when the depression lifted I still had no energy. I went to the doctor and she suggested I may have ME. But by this time I had a different but still quite terrible boyfriend, who convinced me that my tiredness was all in my head and that I needed to do MORE exercise rather than less.
So, I started cycling to and from my aerial classes.
Of course, after a brief couple of weeks of euphoria at what I thought was my energy returning, it got worse. I could only manage to go to my aerial class every couple of months. I was pushing myself so hard by going to the class that I would crash spectacularly afterwards and not be able to go again for weeks.
The picture of me in the image above was the last time I was able to do aerial silks. I had already had to give up doing so much by this point in my life, but an opportunity for a week long course of aerial acrobatics came up and in my typically tenacious mind-set I figured I could manage it. Never mind that I hadn’t even managed weekly classes. I couldn’t imagine aerial also being taken away from me.
At the end of the third day my boyfriend came round and found me crying in the bath. I still didn’t know I was ill, I thought I was just tired and not fit enough. He urged me to stop going, and I stubbornly told him it was normal to be tired after several days of intense exercise.
I ended up taking one morning off and finishing the week, which culminated in a performance (where this photo was taken). Afterwards, instead of feeling elated as I usually did following any kind of performance, I felt scared. I knew I was too weak to carry on doing aerial, but I didn’t understand why. Surely with more practice I should be getting stronger, not deteriorating? With a sort of hollow determination, I tried to go to one more class a few months after the week-long course, but I could barely climb up the silks as a warm-up. I got a weird cramp in my neck and told the instructor I’d injured myself and couldn’t carry on. I stayed till the end of the class, sitting and watching from the side. I knew it was over.
That was two years ago. Last year, I was finally diagnosed with ME. My health had been on a decline since I had glandular fever (EBV) 10 years before, and hit rock bottom when I had reactivated glandular fever shortly after the last time I did aerial.
I’m still coming to terms with ME as a life-long illness (as it is for most people) and not knowing what my prognosis will be. Thinking that I might never be able to do aerial silks again is gutting. But that’s just one of the plethora of things that I used to love doing and no longer feature in my life. Not only am I not able to exercise now, I get weeks of pain and cramp just from walking down the road and back. I’m mostly house-bound and often watching TV is too exhausting.
The sad reality for me and many others with ME is that our lives are ripped from under us with this illness. We can’t do most of the things we used to. We have to quit jobs, can’t socialise, are often house-bound and sometimes bed-bound. Which is why the campaign ‘Millions Missing’ was born. We are missing from the world and from our own lives. A quarter of a million people in the UK have ME and it’s estimated that worldwide there are 17 million. But due to the nature of our illness, and because we’ve been maligned by many in the medical profession and subsequently the media (a story for another time) we can be invisible.
But we are here. Please listen to and believe our stories. And, if you can, fight alongside us.