Challenges of a disability (or two)

It’s no secret that I live with two debilitating conditions, both of which are currently without a cure and have very little medical understanding for cause. M.E. and Fibromyalgia are difficult to manage because they are so fluctuating. I consider myself lucky enough to be able to work part-time and still enjoy many activities that others with the same diseases cannot. Yet, there are still limitations I have to consider; some of which impact both my motivation and ability to write.

What are they?
M.E is also known as ‘chronic fatigue syndrome’, although fatigue is not the only symptom it is usually the most persistent. If you’re healthy, the best way to empathise is to recall a particularly busy couple of days – when you’ve barely had chance to sit, eat or think properly; you go home, exhausted, and then to bed. The next day you wake up feeling refreshed and go about your day as usual. But, imagine waking up as exhausted as you went to bed. Not, just the next day, but the one after that and again after that. That’s pretty much how M.E can feel: relentless.
Fibromyalgia is just as bad, if not worse, as it is a chronic pain condition. That deep, uncomfortable ache you get when you have flu – the real flu, not just a terrible cold – that’s as close as I can get to describing it. Everything hurts, all of the time. If I stay in one position for too long, I get stiff and find it difficult to get going again yet if I move too much the pain worsens. It’s a careful balancing act as to managing the symptoms.
Of course, there are many more symptoms of both conditions – headaches, dizziness, blurred vision, nausea, mind fog…the list can be endless, and so each day is potentially a mine-field of side-stepping the symptoms to try and live as much life as is possible without waking the ‘beasts’.

If you want to understand how this impacts on my daily life read ‘The Spoon Theory’; this is a simple analogy based on a physical number of spoons that someone is given (let’s say you have 12), and then you talk through your day, and each time a unit of energy is used (to brush your teeth, make breakfast etc.) a spoon is taken away. Most people never get to the part where they leave the house for work – which is why so many sufferers of M.E. and Fibromyalgia are either house-bound, or even bed-bound. We get a set amount of energy per day, and once it’s gone our choices are limited to borrowing from the next day (but leaving us with less choice tomorrow) or to stop and rest. Sometimes, not the easiest decision to make when people around you have expectations.

spoon-theory

The Consequences of Daily Life
I feel lucky – because I’ve managed to get to a point in both illnesses where I am pretty good at listening to my body and balancing my life with my conditions. It’s not luck, really, it’s been mostly trial and error; sometimes it still is. I have a job where I work Mondays, Wednesdays, and Fridays so that I can have rest days in between. Sometimes I push myself when perhaps I have to go in on a different day – and end up working Wednesday and Thursday. I pay for it, though. Usually by being forced to stay in bed, or on the sofa, with the option to do very little, if anything. It’s not relaxing, it is being sick – though they seem to look the same to most people when you have to do it every other day. Rest is pretty much the only thing that I can do on these days; and sometimes it takes longer than I anticipate to recover. There is no normal. One day I could push myself and the payment could be an extra day resting, but there is an equal risk that the payment could be a week’s worth of rest. It’s like living with a vicious debt-collector who is never satisfied with what you have.

Being a Writer
So, how does this impact on my writing? Well, for a start it’s difficult to feel motivated when your body is screaming out in pain and in desperate need of sleep – even when it is unrefreshing. I have problems concentrating, especially for long periods of time – so gone are the days when I could sit at my computer and write for hours on end. The most I can manage now is about an hour before the words on the screen start to jump about, my hands get unbearably sore and the headache sets in.

One of the other challenges is that I can’t really write to a set routine. It all depends on how I feel on any given day. Sometimes I can manage a couple of 45m-1hr stints, other times I can barely use a keyboard or hold a pen. I tend to know I’m struggling when I start to lose the thread of what I’m trying to write. I start sentences, and don’t know how I was going to end them.

Possibly the worst symptom, from a writer’s point of view, is the mind fog. This means I often lose words; I have to stop writing and google the word I want. I know that I know the word, but my brain just won’t access it. (I had to do it with debt-collector in the previous section). Sometimes I get the wrong word, so I have to remember to edit particularly carefully. And, the one that drives me insane, is that I’ve lost my ability to be a grammar-Nazi. I am one of those people who hates seeing ‘there’, when someone should have written ‘their’, or ‘your’ instead of ‘you’re’. But now I do this regularly, and it drives me up the wall to find such mistakes in my writing when I know the difference and never used to make these mistakes.

It’s not easy to be a writer. It’s also not easy to have one, never mind two, chronic conditions that fluctuate on a daily, weekly and seasonal basis. Trying to be a writer AND live with these conditions is particularly difficult. I tend not to remember this. This is my life and I go about living it the best way I can given that circumstances that I’m in. Yet, sometimes, it’s worth it to stop and take stock of the individual challenges we all have to face, because we are following our dreams in spite of these circumstances, and we should be applauded for this.


Want to help me achieve my dream? Consider supporting me by buying my short story collection, The Memorial Tree, only £1.99 for seven short stories.


Dreaming with Disabilities

I’ve always been open about my condition in an effort to make the people in my life better understand why I can’t do certain things, or how it will impact me if I do. But I know many more who prefer not to talk about it, or keep it hidden because they feel weak, or ashamed that they have an invisible illness; one that gives the impression that all is fine but that will rob you of any dignity once you have struggled through an event.

I don’t know why I feel the need to share how ME/Fibro changes the way I live my life. Probably because it’s easier to let work colleagues know that my memory is so shocking that if they don’t see me write something down it isn’t going to happen (no guarantee there either I’m afraid!). I don’t want to have to explain each sickness absence when I’m too exhausted to clamber our of bed, or why I need to block out office conversation with my earphones. It’s simpler to have it out in the open and allow people to accept that although I look ok, I’m really not.

Someone recently said to me that, by writing, I could inspire others with similar struggles to live their dreams too; that it’s always easier to push yourself to accomplish a goal when you know it can be done, and I could help demonstrate that it can be done. Regardless of if I could inspire, I have to do it for myself. I want to be a writer and be published and live the life I dreamt up when I was twelve years old. That life didn’t include two devastating disabilities, but whose dream would? But that doesn’t mean it’s not still in reach.

Be Aware of M.E.

.facebook_1525798698262.jpgMy 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.

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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.

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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.

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