How Someone With ME/CFS Is Like All 7 Dwarfs Rolled Into One
It’s May 12th and that means it’s ME Awareness Day again (or ME Awareness Week or ME Awareness Month). For those of you who don’t know, ME (myalgic encephalomyelitis) is a serious, chronic, neurological illness. You may also hear it being referred to as CFS (chronic fatigue syndrome). I’m not going to go into all the politics behind the name but suffice it to say, it gets complicated.
I’ve been wracking my brain for a couple of weeks now wondering what I could post for the day, and a friend with ME suggested I do a funny post. I think I’ve failed at the funny but I at least took aim at a more lighthearted idea.
So, here is ME awareness and the seven dwarfs, or how someone with ME is all seven dwarfs at once.
I’ll start with the obvious one:
Us patients tend to have to be our own doctors a lot of the time. We have to advocate for ourselves and find treatments and drugs and therapies that might help because, more often than not, when you get a diagnosis of ME/CFS, that’s an end to helpful doctors. Now, don’t get me wrong, there are some great doctors for ME out there, but they’re difficult to find among all the bad ones pushing exercise and counseling. We do a lot of our own research into drugs that might help individual symptoms and then bring them to our GPs or specialists in the hope they will listen.
This seems like an obvious one too – I mean, fatigue is in the name, right? Well, the lack of any kind of energy means that we can be tired a lot, but for me, it isn’t one of my main symptoms. (That’s one of the main reasons some people don’t like the name “chronic fatigue syndrome as there are lots of us who don’t feel tired all the time like the name suggests.) But most of us do have sleep issues; they are, unlike feeling tired, almost universal for those with ME. Whether it’s insomnia, hypersomnia, sleep disturbances, reversed sleep (meaning we sleep during the day instead of night) or all of the above, wishing we could sleep normally is a constant.
This follows on from Sleepy quite well. When we overdo it and get PEM (post-exertional malaise, which means all of our symptoms hit us worse after any kind of exertion – and this can be something small like washing your hair or brushing your teeth), we get grumpy. Most people get grumpy when they get sick, anyone would, but it’s more so that we just don’t have the energy to smile and pretend we are OK like we normally do. My parents can definitely attest that whenever I overdo it I get grumpy. My tolerance for small annoyances disappears and suddenly I’m grumbling and glaring at everything.
Google definitions will tell you that to be dopey means to be “stupified by sleep or a drug” which can be very true, but they aren’t the only reasons we get dopey. Another symptom you will find with ME is cognitive dysfunction, or as many of us will call it, “brain fog.” When brain fog happens, things just stop working. That really obvious word you were about to say? Gone. That thing you said you were going to do? Completely forgotten. Understanding something really simple someone is telling or asking you? Nope. An example might be my parents asking me if I want the light on and my reply would be a blank stare while I try to work out if the words being spoken resemble English and what this light they keep talking about is.
Our immune systems tend to be pretty rubbish at doing their jobs, so we can get sick a lot. Some of those symptoms that I mentioned that happen every time we do anything and get PEM? Well, one of them is a general flu-like feeling. Runny or blocked nose, sneezing, phlegmy, sore throat, swollen glands, nausea, even more trouble sleeping than normal and, like a cold, there isn’t much we can do but wait it out.
A lot of people with ME can come across as quite shy and reserved in person. This can be for loads of different reasons, but for me personally, being around people can be so tiring. There’s this smile you are expected to wear all the time, plus following different conversations, understanding everything that’s happening around you and sensory overload from all the sounds and lights. It gets tiring very quickly. Often it’s much easier on the ME to be alone. Though, of course, most of us don’t want to always be alone. When we spend time in your company it’s because we think you are worth the energy and PEM that it will cause. Often we love spending time with you but it’s just not possible for us to do this frequently.
And finally, but definitely not least:
Being sick all the time can be tiring – not just physically but mentally. And any chronic or severe illness will come along with the threat of depression thrown in too. But you won’t find any group of people who are better at finding the small things to smile at. Often we live from one small happy moment to the next. Whether it’s the lovely flower that’s growing outside our window, managing to have a nice chat with a friend or doing a bit of crafting or reading a good book, us sickies are pretty good at finding something to smile and laugh about.
So there you have it: Doc, Sleepy, Grumpy, Dopey, Bashful, Sneezy and Happy all rolled into one person with ME. Next time you hear the phrase “chronic fatigue syndrome,” please remember we’re more than just tired.
This post originally appeared on Ever-the-Crafter.
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