May is M.E Awareness Month, & as well as raising awareness at work, there’ll be plenty to look forward to here too!
There won’t be a blog post this Sunday- because from 6th to 12th May I will be releasing a blog post every single day! Make sure to stick around for teenage awkwardness overload.
Work’s charity of the month for May will be the ME Association, & there will be plenty to look forward to right here too!
At one time the UK parliament took a break from arguing about how we could slip discreetly from the EU like an introvert leaving a party at 9 pm, and instead argued about a disease called Chronic Fatigue Syndrome (CFS). This illness is also known as Myalgic Encephalomyelitis, a slightly more imaginative if unpronounceable name. This being the 21st century, where everyone’s opinion can be shouted in cap locks across the internet regardless of experience or expertise, social media was flooded with posts discussing the illness. Of course, not many people remembered to ask the sufferers of CFS, because that’s too obvious or mainstream or something.
At 14 years old a virus decided that my brain was the perfect vacation spot, and through a series of unfortunate events that even Lemony Snicket would have trouble imagining, I developed Chronic Fatigue Syndrome. It’s time for someone with experience to have their say, albeit with naps between each paragraph.
I have lost count of the times I have faced accusations of faking my own illness to play truant from school or work, to gain access to prescription drugs, to get disability payments from the government, or simply for attention. I have also lost count of the number of times I have been told that the disease is fake, or purely imagined by all those said to have the disease, despite an ever-growing body of evidence suggesting otherwise. Why listen to scientists, though? It’s not like they’re experts or anything.
Social services even became involved when an anonymous accusation was alleged against my parents suggesting that they were making me use a wheelchair unnecessarily to obtain extra benefits. Fortunately, social services neither had the time nor the resources to look into such a petty and under-evidenced claim, but the experience was perturbing all-the-same. This had a large, soul-destroying impact on a teenager in the midst of puberty. My poor parents.
CFS, aside from being the most unimaginative name ever, does give the impression that sufferers of the condition get a bit tired and need to follow the sleeping schedule of a cat. Yes, I get really, really tired, really, really easily. As in, sat-up-and-opened-my-laptop easily. However, there is also the joint and muscle pain, headaches, dizziness, nausea, sickness, muscle weakness, cramps (holding a pen is a fun way to induce hellish cramps, which won’t have any effect on my writing career at all), irregular appetite, sleep disturbance (ironic), itchy skin and eyes, muscle tics, passing out, short term memory loss, and poor concentration to contend with. What was I saying?
To summarise, it is a debilitating condition forcing many sufferers like myself to use walking sticks and wheelchairs, and in some rare cases can even prove fatal.
So, to encompass the nature of CFS in a name, (and what, after all, is in a name), it would have to be called Chronic Fatigue, Pain, Dizziness, Nausea, No Sleep, Brain Fog Syndrome, which is a lot less catchy, and a lot more tiring to write.
If you have managed to stomach any recent news reports, you might have encountered news of an “opioid epidemic” sweeping America. One of the main talking points is whether people with chronic pain such as fibromyalgia, arthritis, and CFS should have access to these drugs. While I personally have had very limited experience using opioids (but the few times I have, man I felt good), I have at least been able to access alternatives that might not be affordable were they not on the NHS. It should also be noted that some of prescriptions I use are to manage the side effects of other prescriptions, in what I like to call “pres-ception”. It once got so bad that the shelf in the medicine cabinet collapsed, I kid you not. One of my favourite jokes is to claim that I am a human maraca because of the number of pills I take on a daily basis. What that actually turned out to be was gall stones, but that’s another story for another day.
Here’s the thing; on occasion I am unable to take these medicines as most of them require ingesting with food to prevent stomach ulcers. If I can’t eat, or throw up everything I eat, I can’t get the medicines down me. When I haven’t been able to take my medication, I notice it pretty quickly. On these days sitting upright, even propped up by pillows, is exhausting. Even going to the bathroom is practically impossible, which has led to one or two awkward scenarios.
Here’s the thing; I was prescribed “exercise more but with medical jargon” by my physiotherapist. Being the naïve teenager I was, thinking that the medical professionals would know how to treat my illness, I followed her instructions to the letter. It worked so well that I went from being able to walk around outside with only the need to take occasional breaks, to having to use a wheelchair when I want to travel more than a few metres.
Nor am I alone in this, as multiple studies have found that these exercise programmes tend to make things worse, not better.
CFS would be a lot easier to study and treat if it didn’t vary like the British summertime climate. Some people just need to take breaks or naps every so often, and some people can’t sit upright unsupported. I’m somewhere in the middle, using a powered wheelchair but able to work, and I can hobble around the flat leaning on walls, furniture, and my husband.
I am often compared to others who have had CFS, and people will even try to shame me by saying that “X” was far more active than me when they had CFS, or that “Z” had it far worse and I don’t know how lucky I am. The reality of the matter is that the wide variability of the disease means that knowing one person with the illness does not give you enough experience to make judgement calls on others.
The debate as to the existence of CFS can be largely attributed to the fact that, as yet, there is no medical test available that can distinguish who has and hasn’t got the illness. There are no biomarkers that can provide distinct answers. This means that people are able to fake it, knowing full well that their lie can’t be undermined by pesky scientists. It raises questions as to how to tell the fakers and real patients apart.
The fakers (I like to replace the A with UC) give the rest of us a bad reputation, and have made the lives of those of us suffering from the condition significantly harder than they already are. So, if you think the fakers piss you off, imagine being in our shoes (or wheels).
Everyone needs to take a break every now and then, and I’m sure it comes as no surprise when I say that even going on holiday is problematic for those of us with a disability. If it does come as a surprise, you might want to crawl out from underneath that rock you’ve been living under.
The first hypothetical hurdle comes when choosing where to go. Holiday parks like Disneyland are probably a relatively safe bet when it comes to accessibility, but not everyone enjoys eating pure glucose while being harassed by princesses and having to dodge around marriage proposals on every corner. City breaks provide a solution to most of these problems if you can cope with the heavy levels of traffic as everyone not lucky enough to be on holiday travels to work. These also rely on venues being accessible, something which is not always guaranteed. For those who aren’t especially fond of other human beings there are many beautiful historical and geographical marvels around the UK, particularly around North Yorkshire and the Lake District, but mountains and castle ruins aren’t the most wheelchair-friendly terrain.
The next thing to consider is accommodation. I was never one for camping as the idea of sleeping on lumpy grass while rain batters the tent mere inches from my face, and having to check food for insects before eating it does not appeal to me. While there probably is a wheelchair friendly tent hidden in the annals of the internet, I imagine it would cost a pretty penny, so camping is immediately ruled out. Youth hostels are often affordable and have accessible rooms, provided you can cope with sharing a space with delinquent adolescents. Independent hotels are never guaranteed to have accessible facilities, so the easiest route is to hope that a chain hotel in the area has an accessible room free for when you want it.
Most difficult of all is the consideration of transport. There are countless instances of air services losing wheelchairs, literally leaving the wheelchair user stranded in a different country while the staff try to figure out what all the fuss is about. Trains are also horrendous. Booking assistance to get on the train is like disability roulette as many a time it simply doesn’t materialise. Wheelchair spaces are often two narrow to accommodate a wheelchair, as are the bathrooms, and on occasions trains insist that wheelchairs are stored in luggage carriages (at an extra cost) at which point they get lost. Coaches can only accommodate manual wheelchairs that fold up and fit in the luggage component, although the drivers are usually trained in how to handle disabled passengers so are significantly better than trains and planes. Travelling any distance in buses or taxis soon accumulates great cost, and it is common for a disabled taxi to turn up very late, or the wheelchair space on a bus to already be in use.
All in all, the stress of organising everything and dealing with the inevitable accessibility issues often makes going on holiday feel like hard work. I know many people who choose to have a “staycation” instead, where they stay at home and only visit places in the local area for relaxation. Non-disabled people might find this concept ridiculous, but when going back to work feels like the holiday you were supposed to have, what’s the point in going at all?
Let’s be honest, we’ve all had plenty of cringe-inducing moments that keep us awake at night when you most need the sleep. Much as I would like to say otherwise I am no different in this respect. However where I differ from the norm is that I can blame these horrendous instances on my disability, or more specifically the so-called “brain fog” that plagues people with various chronic illnesses.
As a member of a small team in the workplace I grew accustomed to the little quirks and idiosyncrasies that would make us the perfect subject for a sitcom, were it not for the fact that this idea has been flogged one too many times. Organising a table tennis tournament for one lunch break has been one of my least serious assignments, but being asked to arrange a “cheese day” takes the biscuit (because nothing goes better with cheese than a nice selection of savoury biscuits). For cheese day we are all required to fetch different cheeses to work, and during the team meeting we’ll all enjoy samples of them all, which for an office is an undeniably weird thing to see displayed on the calendar.
Imagine my embarrassment then, when I realise that I had not sent the email invitation to my colleague, but instead had sent it to someone else of the same name in my address book. Fortunately he had an excellent sense of humour about it and is now considering implementing a cheese day in his own office. So if cheese day goes viral, you know who to blame; parents who give their children common names. Like Emma (thanks mum and dad).
I am particularly afflicted with brain fog first thing in a morning, which makes taking my morning medication rather interesting. The most common problem arises with a tablet I take both in the morning and at night in different doses. If I get them the wrong way around, taking the larger dose in the morning rather than the evening, I will spend the rest of the day in a drowsy stupor. This having occurred on a work morning means that technically I have been to work while high and got away with it, a claim that some would use the term “badass” to describe.
Perhaps more worrying was the occasion when I tried to inhale my nasal spray through my mouth, which was a somewhat interesting experience.
While living in halls of residence at university the fire alarm being set off at unthinkable hours by drunk people trying to use toasters was a very regular occurrence. When the fire alarm exploded into life at 2 am in my first week away from my parents I wondered why my dad hadn’t switched the burglar alarm off, which would occasionally go off at night when a spider crawled across the sensor (and never when someone was trying to break in). This is despite the fact that the fire alarm sounded completely different, was much louder, and included a red flashing light on the ceiling for those who couldn’t hear the alarm. Needless to say I was one of the last to arrive at the convening point as we were evacuated.
There is also the story of how this photo came to exist:
Discussing brain fog with a few online friends an accidental misreading lead to brain fog being substituted with brain frog in all of our messages. Given that for some strange reason I have a plushie toy frog (I still have the inventively named Croaky) it didn’t take long before dad took this photo for me. Selfies were harder back then.
By the way, if this becomes a meme the extra publicity is much appreciated.
