My disabilities may be hidden, but I do not keep them a secret. Myalgic Encephalomyelytis and Fibromyalgia are both a challenge to pronounce and difficult to live with. Typically shortened to M.E. and Fibro they are both conditions that have no cure and are little understood in the world of medicine. It was only recently that a paper suggesting Graded Exercise Therapy and Cognitive Behavioural Treatment as treatment for M.E were discredited, despite years of complaints from both patients and medical professionals alike.
But today, May 12th, is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) and has been since 1992. It covers conditions such as Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).
Florence Nightingale was born on May 12th and was believed to have suffered from ME/CFS, alongside others such as Charles Darwin, Marie Curie, and Cher. More recently Lady Gaga has been in the press regarding her battle with Fibromyalgia, and I believe Morgan Freeman is a sufferer, amongst others. American filmmaker Jennifer Brea also created a documentary about her life with M.E. that was released to critical acclaim and is now available on Netflix in an attempt to raise awareness about this hideous illness.
So today I had to write about this. The most challenging aspect of being a sufferer is that M.E/Fibro are fluctuating conditions with symptoms that manifest in ways that others may not be able to see. If they are visible to other people then we’re probably behind closed doors doing little other than resting and remaining quiet so that the symptoms don’t escalate into a relapse. This can take days, weeks, months and sometimes years to recover from. You’re forced to reduce activity down to zero and build it back up to an acceptable level in very small increments. It’s a bit like Snakes & Ladders – where if you overdo it, you end up dropping way back and having to start again: not to mention we aren’t capable of climbing up the ladders. Sometimes, we may never get better – so I try and avoid a relapse at all costs.
ME/Fibro is like waking up to discover that your limbs are now sewage pipes, filled with sludge. Every morning I am sore and stiff meaning I clamber out of bed an old woman, grunts and sighs included. My hands are typically crippled first thing in the morning, more like claws with non-functional fingers unable to spread out or clasp my toothbrush. Usually I wake up fatigued, which is different to feeling tired – the main complaint of M.E that so many misinterpret. Fatigue is that feeling you get when you’ve pushed yourself to your limits and just can’t manage anymore; usually what most people feel after a busy day on the go. I wake up already at this stage and then have to push myself to go through another day of tasks and chores. It’s not so bad now; it’s my new normal, but that doesn’t mean I’m not sick.
Of course, this is not the me that people see. I have become adept at dealing with and masking the myriad of symptoms that plague me every day. Mostly, I have lots of breaks and rests. I work part time because it’s the only way I can, and I’m luckier than many with these diseases in being able to do so. I am now healthy enough to do a 7-hr day, providing I don’t rush around too much and I can take a rest day between (though this was not the case in the beginning – then I could barely mange an hour out of bed. I was house-bound for a few months as a result). Usually I’m fit enough to do an hour or so of Festival work or writing on days when I’m not at work. Though it should be acknowledged that I am on routine medications to help me maintain this amount of daily life.
Part of the reason why I am able to be so active – and I inwardly scoff at the word ‘active‘ to describe myself because it is so much less than I was capable of once – but the reason why is because I stick to my routine (working M/W/F with a day of rest Tu/Th and Sat/Sun) and ensure I get gentle exercise through walking my dog everyday. It’s important for me to keep moving otherwise my joints lock up and become more painful, but I have to take it steady otherwise the fatigue kicks in so badly I am unable to make it up the stairs. People don’t see me when I’m like that, because I’m hidden away behind closed doors. But it happens. More than most of my friends and family know; more than I’d like them to know. It’s no fun being the one to leave early, or decline invitations, or be unable to shop in the supermarket like everyone else.
Either condition I would not wish on anyone, as I had to rebuild my way of life after fatigue and pain tore it down (along with the many other symptoms that wreaked havoc on my life) . Having said that, these disabilities are now an integral part of who I am and how resilient I had to become. So, no, I will not hide them even if they themselves remain hidden on me.