ME symptoms & tips: Enjoying media content with ME

Hello my lovely loves!

One of the things I've struggled most with during my recovery is not having the energy to watch TV, films or read.

I used to be an avid reader, loved film nights, and would watch any crime drama going. Basically, I'm a sucker for a story.

Having ME/CFS has seriously impacted that because the stimulus provided by media content is exhausting, and would often mean I'd get overstimulated and not be able to sleep.

However, not being able to distract myself from my situation at all wasn't helpful for my mood, so I've slowly worked out ways to allow me to enjoy far off places and new characters without completely wiping myself out.

With my resting ratio slowly allowing me to recoup more energy and heal, I've been able to go from only being able to read small amounts on my phone (and no TV or film whatsoever) to being able to read the occasional physical book and catch up on some of the programmes or films I've missed over the last few years (even if it means I have to do it in manageable chunks on my phone).

Here is what I've learned so far.

The sympathetic nervous system

The first and most important thing to understand is that your body doesn't understand the difference between fantasy and reality. You do, but your body doesn't.

Your sympathetic nervous system is the part of your body that deals with fight or flight (and the less mentioned, but no less important freeze). When you're in danger it's this part of your body that triggers an adrenaline response, and allows you to react in a heightened state to protect yourself. It's linked to emotions like fear, aggression, anxiety and excitement.

The key thing is, this response can be triggered regardless of whether the danger is real or not. It's kind of a evolutionary "better safe than sorry". Better that you realise that the shadow in the corner is just a coat on a chair (and not an assailant) after you're primed to deal with danger, rather than spending time assessing and having to summon the response in the potentially critical first moments.

That's why people get frightened and feel jumpy during and after a horror movie, and that's why a fight scene puts you at the edge of your seat. Your body is responding to a potential threat.

Pretty much all media content makers use this reaction deliberately to manipulate the viewer's response. After all, the whole point of a story is to get you to feel something.

The storyline itself is obviously one way of doing this - an emotional response to the character's plight etc - but with film and television, the way the images are shot, edited, and given sound is all specifically designed to make you react in the strongest possible way.

This is not inherently a bad thing. Frankly, it usually makes for a bloody good story, and people's sympathetic nervous systems are constantly in a state of flux anyway, so it's not usually damaging.

The problem comes when your body's reaction to adrenaline is skewed already; in this case, because you're ill. 

Most people can calm from an adrenaline response quickly, people with ME/CFS however don't seem to. There's all sorts of theories as to why that is, depending on what people think causes ME, but for the sake of keeping this post as succinct as possible, I won’t go into it at the moment.

In any case, adrenaline responses use up massive amounts of energy and they suppress the body's ability to rest and heal.

(This is one area where psychological tools are actually useful for ME patients, because they can keep you calm, and teach you how to lower your adrenaline levels. The lower your levels, the easier it is for the body to heal itself.)

It stands to reason, therefore, that the best way to be able to enjoy media, of any kind, is to lower the chance of an adrenaline response, so you use less energy.

Suspense is your enemy

You’ve doubtless heard of Alfred Hitchcock. Much of his success is owed to him being the “Master of Suspense”. He was amazing at keeping his audiences at the edge of their seats, just by drawing out an unresolved plot-line at the perfect rate. From our point of view, that’s a extended adrenaline response.

If you don’t know what’s going to happen, but there’s some form of foreboding that tells you something will, then it’s going to trigger your fight or flight response, and you’re going to be flooded with adrenaline. 

It’s probably really going to annoy you that the best way to counter this, is to find out what happens, before you watch/read/listen to your media content. If you know the basic story outline, it prevents such a dramatic adrenal response, and is therefore much less exhausting.

Basically, you need to read spoilers. 

Film and TV are fairly easy to find, especially for more mainstream offerings. Books are more difficult. Again, famous ones often have a breakdown online, but a book that’s just been released is difficult to find a synopsis for. I really wish there was a website dedicated for this, because there’s been a number of times where I’ve had to wait to read something until someone is kind enough to make a wikipedia page about it’s storyline. 

Frankly, this sucks, because, for me, half the fun of a good story, is not knowing the ending. (Unless you’re one of those strange people who likes to read the end of a book before starting.)

But, if it’s a choice between knowing what’s going to happen and being able to watch an episode of Game of Thrones, or not being able to watch it all, then I know which one I’m going to choose.

It also helps with this next tip.

Bite size chunks

I used to regularly stay up most of the night reading a book, unable to put it down until I found out what happened. Obviously, now this is a MONUMENTALLY BAD IDEA. I need sleep or I’m not going to be able to function at all for several days, and I’m going to feel awful the whole time.

It’s much more healthy for sufferers to break up your books, shows or films into manageable chunks. It gives you time to process what you’ve taken in, and allows you to rest more, so you won’t get overstimulated. (And hopefully that means you’ll be able to sleep more easily.)

This is really difficult to do, because if you’re enjoying something, you want to keep on enjoying it. Fortunately, finding out the basic storyline gives you a couple of advantages for this.

1. If you already know roughly what’s going to happen, you’re not going to lie in bed all night wondering what’s going to happen. We’ve all been there.

2. You’re much less likely to want to read/watch things all night. There's no need. You know what happens.

3. You'll know a good place in the storyline to stop. Like a checkpoint in a video game. I generally try to stop whatever I’m reading or watching on a high. There’s no sense in feeling thoroughly depressed until you next start up the story again.

It'll take time, and trial and error, to work out what is the amount of media you can manage at one time, and in one day/week, without getting overstimulated. I started at about 5 minutes at a time, for no more than 15 minutes a day, and then slowly increased it over time, with that help of the other tips I've mentioned.

I can now watch up to three hours in a week (although frankly it’s often much, much less than this), split into sections of different times depending on how I’m feeling and what I’m watching.

It differs depending on the type of content; reading may be easier or harder for you than watching something. Listening to music will be its own monster. Again, the genre will have an effect on that too.

I can read on my phone more than I can watch programmes or films (again on my phone), and I can watch more than I can read physical books. I can do all three more than listen to music. Radio is still a no-no, especially talk radio, but I don't have to instantly leave a room where a radio is on as often now, so I'll take that as a win. (I seem to do best with visual cues basically.)

Work with your resting ratio

Similarly, if you’re using a resting ratio (and I’d really recommend it), then make sure to try and stick to it when you’re watching or reading. It can be incredibly difficult when you’re really into a story, but it’s worth it in the long run. 

Set timers if you struggle to remember to stop and rest.

As time goes on and you get stronger, then hopefully you should be able to watch or read and listen in longer and longer stretches.

Emotional response 

Something that you also have to be aware of is your emotional response to a story or to music. 

Everyone has at least one film that completely blindsided you with emotions; those films that left you feeling completely drained, and quite possibly depressed, for days afterwards. 

Mine is City of Angels. It took me several years to forgive my Mum for encouraging me to watch that cry fest. Although, to be fair, she hadn't watched it either, and I don’t think she was anticipating the raging ball of tears and snot I became during that film. 

Even that paled in comparison to my response to the His Dark Materials series by Philip Pullman. I cried so much after the Amber Spyglass I actually wrote a new ending and wedged it in the book to make myself feel better.

Emotions, like your fight or flight response, use energy, so if you’re feeling a bit tired but want to watch something, choose something light-hearted rather than Angela’s Ashes or something.

Also, if you’re a sufferer of ME/CFS, you’ve already got quite a lot on your plate, so think about what kind of thing you actually want to watch. I thought I might use my time housebound to read the classics, but most of them are desperately sad, and I don’t really want to deal with unhappy endings at the moment.

You might find an angst-fest cathartic, and that's fine, but just be aware of what you’re signing up for, and that it's probably going to take more energy.

I started with clips of my favourite comedians and went from there.

The devil you know

When starting back into media content, or attempting to enjoy it on a more regular basis, it’s better to start with old favourites. You know the story, you’re familiar with the emotions it evokes, and you have that lovely sense of seeing an old friend. It’s basically all of the enjoyment with none of the added stresses. 

As I said, I started off with clips from comedians I know and like for TV, and for books I chose Harry Potter. Because I could probably explain the plot of all seven books word for word at this point.

It was also a great test for me to see what sort of level I was at. I knew how long it would’ve taken me to read the series before I got sick (less than a week), so knowing that it took sixteen weeks allowed me to estimate my functioning level at the time.

The strangest thing is my actual reading speed hasn’t decreased. I still read very fast, but the amount of time I’m able to read without getting sensory overload is much, much shorter. Before I could read an entire book in one stretch, but now I’m lucky if I can do 15 minutes without a break. Brain fog hits and then the words stop making sense, even if I was able to speed read 5 minutes prior.

Over time I’ve been able to slowly watch longer clips, and upgrade to watching short sketch shows. The leap to film was a bit more difficult, but I broke the Muppet Christmas Carol into pieces and watched as much as a I could. 

The first year I tried I couldn’t watch the whole thing, but last Christmas I finally managed it. (I then had the Marley & Marley song stuck in my head for about three days, but that’s par for the course.)

Quality film at it's finest

Timing

Most ME sufferers have a time of the day that they feel slightly more able. It’s good to work with this time, but it’s not necessarily going to be the best time for watching TV or film, or even reading a particularly exciting book. 

Even though my most energetic (lol “energetic") time is the afternoon, I try to watch anything exciting in the morning, and definitely not after early afternoon, because I need time to process what I’ve taken in. If I haven’t finished watching I’ll save it for another day.

If I try and watch something too late in the day it’s still running though my head when I settle down and I find it much more difficult to fall asleep. 

Physical books have a little more leeway for me, but I still leave them downstairs when I go up at night. I can read on my phone before bed, but I tend to stick to short stories or things I’ve already read in the past.

I also avoid news before bed, because I don’t want to get really angry at things before I have to sleep, or I’ll just lie there mentally lecturing various people on why they’re wrong instead of resting.

Try not to multitask

I used to put a DVD or music on while I worked constantly before I got sick. It allowed me to sort of zone into this wonderful state where I’d be relaxed enough to get loads done, but also let me feel like I wasn’t doing much at all.

This Does Not Work with ME/CFS.

In my experience (and probably in yours) attempting to split your attention is a one way ticket to terrible Brain Fog. To me it feels a bit like two completely different songs are playing really loudly at the same time, and I can’t do anything except want to put my hands over my ears until they stop.

If you know that you have the same issue, great, but you should probably make other people aware of that too. 

If you’ve got a loved one who likes to ask you many, many questions about various characters in a show, or tell you about their day when you’re watching a film, then you’re going to end up feeling awful when you try to concentrate on two things at once.

I know it’s difficult because you don’t want to seem rude, and that’s fine. But the person you love needs to understand just how much of your energy gets used for a task like this. 

Explain the song analogy, maybe show them this post if you want (hi!), but only being able to concentrate on one thing at once is not your fault, and it doesn’t mean you don’t want to spend time with someone or hear about their day. 

You just need to hear about what Keith said to Janet in Accounting at a time when you’re not also watching pictures flash in front of you, trying to follow a character’s emotional journey, and listening to a soundtrack specifically designed to make you reach a state of fight or flight.

The Importance of Eye Movement

Something that I stumbled across that’s been really helpful, is limiting the amount of eye movement you have to do in order to enjoy your book or TV or film.

I spoke before about how when you’re in a car you’re not aware of all the tiny little adjustments and decisions you’re subconsciously making to compensate for (and anticipate) the movement of the vehicle, as well as the sensory input of the world rushing by. This is similar.

The more your eye has to move across a page or a screen, and the more that’s in your peripheral vision, the more tired you’re going to get.

You might not consciously be thinking about the words on the opposite page of your book, or the plant stood next to the TV, but your brain is going to be constantly trying to make sense of everything around you, and that uses energy. Your filters are compromised and anything extra will tire you.

There are a few ways to combat this.

1. When watching something, try it on a smaller screen.

I can’t watch things on the actual TV yet. Even the strain of watching things move across the entire width of my laptop screen is tiring.

I watch things on my iPhone, and I’ve slowly begun to watch short You Tube videos on my iPad Mini, as a way to eventually make it onto larger screens.  I’ve also bought a portable DVD player to eventually use for my much neglected DVD collection.

The plus side for this is that smaller-screened devices generally cost less. The downside is that most people have massive TVs. It’s something to work towards though!

2. Keep a calm space around wherever you’ll be watching media. 

If you are able to watch on a larger screen (good on you!) don’t have too much around the TV, especially anything that moves. Extra movement is definitely going to draw your attention, and split attention is a recipe for brain fog. 

Shut curtains if you’ve got a pathway outside where your TV is. Shut windows to stop breezes moving things. Do what you have to do to watch that episode of Midsomer Murders.

3. Cover extra words on a page.

Get a piece or two of thick black paper or thin card, and cover the page you’re not reading. You can even cover half the page you are reading, so you can only see a few sentences at a time. This is what I did to train myself to be able to read physical books again.

Black paper isn’t necessary, but it recedes visually, so it’s easier for your brain to ignore than white or a colour. It also won’t show any of the words through it.

4. Wear headphones

Whether you’re watching something or listening to music, it’s much easier to concentrate on what you’re doing if you can’t hear other things around you. Again, splitting your attention is going to tire you much more quickly.

5. Accessibility features

Lots of devices for reading have great accessibility features that allow you to change the background colour, font, text size, and even reverse the screen so you see white-on-black, instead of black-on-white. 

Play around and see what works for you. When you get sick and have to read something, you realise how much of a difference a good layout and an easy-to-read font makes.

Doing these things made a genuinely massive difference to me, and I can’t recommend it enough if you’re trying to enjoy more media.

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So that’s what I’ve learned so far about trying to enjoy media with ME. I really hope you found it interesting and, more importantly, helpful. 

May you never miss another episode of Game of Thrones.

H