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.
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).
