By Kelly Reid, kellyreidcreations.com
Living with M.E (Myalgic Encephalomyelitisis) like living on a roller-coaster; every so often the floor plummets out from under you and no matter how much you may want to, there is no getting off until the ride ends.
10 Years with M.E
I’ve had M.E since I was 13, now 23 and it’s been the biggest struggle I’ve had to overcome in my life so far. M.E has a wide variety of symptoms including chronic fatigue, headaches, muscle and joint pain, flu-like symptoms, light and sound sensitivity, dizziness, weakness and PEM (post-exertional malaise) which means I might do something tiring today but not feel the effects for another 3 days. This makes it difficult to figure out what triggered a crash or rise in symptoms. M.E is the kind of illness where having even mild M.E usually means not being able to work more than part-time, and there are many people with severe M.E who become and remain completely bedbound.
Becoming a chronically-ill adult
I got very ill very quickly when I was 13, becoming mostly bedbound in just a few months. Over the following five years I slowly got a little better each year until I was well enough to go to university, but halfway through my third year I relapsed back to square one and I’ve spent the last two years navigating what it means to be a chronically ill adult, not a chronically ill teen.
Mostly I’ve found it involves a lot more paperwork and doctors visits! But more so I’ve had to accept that overcoming M.E doesn’t mean finding a cure or waiting out recovery, it means finding a way to live my life and be happy alongside my illness. I don’t wake up every day resenting my body, I accept it is what it is and I find a way to live with it.
Finding the chronic illness community
This has meant finally chasing up doctors for more help and support as well as embracing my walking stick and owning my identity as a disabled person, helped along by the fact I finally decided to become engaged in the online chronic illness communities.
Possibly the hardest part for me has been accepting what this will mean for my career. Not being able to work as a recent graduate felt pretty terrible, but it’s also come alongside accepting that I’m unlikely to ever be able to work full time, and I need to prepare for that. It took a long time to grieve for the loss of so many opportunities, but now I’m able to see it as a challenge that motivates me to go and do something for myself, build a career that is accessible and adaptable to my needs.
What I’ve learned after 10 years with M.E
Even being unable to work, I find so much purpose through making things, be it crafting or Instagramming my love of vintage clothing and talking to the chronic illness communities online. Finding a space in which I can talk about life with chronic illness with people who get it has been transformative to me. I don’t feel ashamed of my illness or my life. I don’t feel the need to hide from the world the way I used to.
Kelly is 23 and has had M.E for ten years, surviving mostly on tea and books. She creates content about chronic illness and vintage fashion on Instagram @kellyreidcreations, and on her blog www.kellyreidcreations.com. She also runs a pen pal matching service for spoonies looking to make new friends at www.spooniepenpals.com.