my journey into ME
I was inspired by Mab Graves’ #sickgirlsclub of amazing women over on Instagram to write of my own experience as a sick girl. It’s very difficult to open up and share about such a personal thing but I do it with the aim of growing awareness of Myalgic Encephalomyelitis (ME) and supporting the millions of others who suffer daily with it.
Those who had been regular followers of mine might have noticed that I haven’t been around much for the past few years. Social media being what it is these days one could easily be forgiven for thinking that I might have died, or perhaps joined a cult out in the boonies somewhere. The truth is neither of these things, although at times I’ve felt like either would be preferable to the reality. Simply, I’ve been unwell; very much so.
I’ve been keeping the details to myself for many reasons; but the primary one is that I wasn’t capable of doing much of anything at all. I have Myalgic Encephalomyelitis, or ME. It’s often commonly referred to as Chronic Fatigue Syndrome; a ridiculously insulting title that conjures images of wilting women declaring that they’re “so tired and simply must have a rest!”. The truth of ME is so much more than just feeling tired, though that is one of the many symptoms.
It began for me more than twenty years ago when I caught Ross River Fever (RRV). After my initial illness had passed I began to have relapses of post-viral illness a couple of times a year. It would hit me much like a flu, similar yet different somehow. I’d need a week off work resting, then I’d be back to life as good as new. My husband and I always recognised the “Ross River relapses” and they became a mild medical curiosity in my life that was only barely disturbing and not much more that.
6 years later I had my first child and the relapses seemed to stop. I had a few good years of being the healthiest I’d ever felt (thanks to the awesomeness of motherhood!). At some point I started getting flu-like illness again but I never really thought it was the relapsing RRV. It seemed that I would catch every virus that flew my way, but the reality was that I’d have 3 days of feeling like I had the flu and then I’d feel good to go again. I thought I had one of those annoyingly fragile immune systems, so I’d drink more green juices and go about my business.
By the end of 2013 life was good. I had an adorable family, I was in good health, had a job that I loved so much, and got to spend my life either creating art or surrounded by the art of others. For me it couldn’t get any better than that. But things started to change. For various reasons my long days at work seemed to be adversely affecting me. I’d finish work and be unable to do much of anything else for the rest of the day. I reduced my hours, enlisted my husband and boys to buy groceries and take care of the housekeeping; all so that I could just make it through the work day. Eventually I saw that I needed to stop work so that I could focus on getting my health back. The silver lining was that I’d now have more time to concentrate on making and selling more art! Yay!
The first six months weren’t too bad. My health didn’t really improve, but it didn’t get worse so I was satisfied that I’d done the right thing. But then things changed and became so much worse. I was now exhausted all the time. No amount of sleep or rest seemed to help. My day became a constant cycle of trying to satisfy my need for energy recovery. Having a shower in the morning was so debilitating that I needed to go back to bed to rest after it. I’d make my boys school lunches and need to rest again just so I could drive them to school. That twenty minutes of driving would wipe me out so badly that I’d spend the rest of the day confined to the couch just so I could recover enough to make the drive to school again. So that was another drive, which meant I was out of action for the rest of the day. I was couch bound while my dear husband took care of all the cooking, the cleaning and wrangling of two busy little boys and a Great Dane.
Surprisingly the exhaustion was the least of my symptoms. I had pain everywhere. I had pain in muscles that I didn’t really even know about. Pain deep in my bones, chest wall pain, migraines. I became intolerant of humid heat (unfortunately you can’t avoid the humidity when you’re living in Queensland). My vision changed daily. Sometimes it’d be sharp as usual, other times blurry and hazy. I developed tics and spasms in my muscles, my right arm became heavy and weak. I had walking problems, bumping into walls, stumbling around like a drunk person. My fine motor skills were affected. I was clumsy, often dropping things, had a weaker grip, couldn’t hold a pencil well enough to draw.
The symptom that bothered me the most was the cognitive impairment. I’ve always had a super sharp memory and attention to detail. I was the person who could recall all the minutiae of a twenty year old conversation, where we were, what we were doing, and even what was on the tv in the background. I’m the person who walks into a room and instantly spots that the wallpaper has a 5mm hang fault, or that someone’s shoelaces aren’t laced the same way. But that all changed. I had a terrible short term memory loss, only managing to remember the very routine things of life. I couldn’t speak well, finding myself searching for the simplest of words in a conversation and slurring the words that I did manage to find. Weirdly my awareness of time changed. I struggled to tell the difference between something I’d done yesterday and something I’d done a month ago. It was like I had no secure frame of reference for time.
Then there’s the defining symptom of ME known as Post Exertional Malaise (PEM) and it’s a doozy. Basically it means that any exertion, be it physical or mental, causes a delayed exacerbation of the symptoms of ME. That delayed exacerbation is known as a crash, and they can be brutal.
With all these symptoms going on I’m sure you can see how making art and actively pursuing a career were out of reach for me at the time. I spent two years before I saw any signs of improvement. We took advantage of that small change to address my heat intolerance issues by packing up our home and moving across the country to settle in Tasmania.
In the two years since our move my health has been on a very slow incline. I still have all the symptoms in varying degrees, but I discovered I can manage them by learning the art of pacing. Every single thing that I do requires energy, so I’ve become a master of balancing my energy expended against the energy that I can recover through appropriate rest. Now an outing to the grocery store is balanced with an hour of horizontal rest. An hour of computer time (like I’m doing writing this) needs to be balanced by 2 hours of horizontal rest. Family days out are very taxing. Those have to be balanced by a day of rest. Although I’ve become good at pacing myself I often overdo it. I can’t often manage hours of activity (mental or physical) at a time, and when I do there’s always a PEM crash. So I’ve learned to be someone who does things in very small doses.
Which brings me to my art. I haven’t been able to do anything creative for a long time. But over the past few months I’ve been doodling in my sketchbook and slowly, slowly starting to get a feel for it again. Holding a pencil feels awkward, a paintbrush feels downright alien, and I struggle to hold a thought in my head long enough to get it down on paper, but I think I’ve reached the point where I can move forward creatively.
Things in my life have changed considerably, but a different me is still me, and I try to remind myself of that every day.
Thanks for hanging in to the end, I know it’s been a long read. We don’t know a lot about ME at the moment, so when people like me share our experiences it’s done with the aim of growing awareness and supporting the millions of others who suffer daily with this disease.
We’re supporting the scientists who are working hard to learn more about ME to ultimately finding treatments and a cure.