Rewarding the ME/CFS Brain

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Jody Smith explains how growing virtual lettuce created a real sense of satisfaction and provided a subtle return to the land of the living...



I knew I was coming back a bit to the land of the living after several years' exile when I was able to go online again. Getting onto Facebook and learning my way around was quite a coup.

It was a ridiculously challenging and exhausting ordeal. What should have only taken days, instead took a few weeks. And even once I knew what I was doing, I would find myself frazzled and sweating as I'd write a few status updates and replies to friends.

Just to be able to say to myself "I have friends," was a novelty that got endorphins moving which had seemingly forgotten how to move for years. True, I never saw any of these friends. But I hadn't seen any in my town for so long that knowing I had friends across the country or around the world was such a step forward, it left me breathless and in tears at times.

That autumn, my friend Lisa, who also had ME/CFS and who lived in a tent on the West coast, took a foray onto a Facebook game, and sent me an invitation. It was a slow paced little game, which meant it was just a bit too demanding for me, neurologically speaking.

But I found that it was a great reprieve after writing articles and living on Phoenix Rising's forums at the time. And I could click on my little crops and trees at the slow pace I needed to creep along at. If I had to close my eyes, or go to bed, or step away from the computer because I felt like I was going to crash, I could do that, and I did. Often.

A year earlier, I would not have been able to play this game. And, of course, at that time I also did not have a friend who would have invited me. So the reward systems in my brain were getting dusted off, and like the rusty old tin man, being slowly oiled and regaining some mobility once more.

A few months later, I moved on to another Facebook game, this time inviting Lisa to join me there, and I talked my husband into playing as well. This game had a faster pace, and involved cooking and serving food to little cartoon people.

It's funny. I really was never very big on games before. And even now, while I play a game or two most days for awhile, I feel a bit embarrassed, and I feel a crazy grin on my face sometimes as I become aware of what I'm doing.

I read somewhere that the reward centers of the brains of the chronically ill are depleted. Sorry, I don't remember where that comes from (thank my ME/CFS brain for that), nor do I remember anything else from that article. But, I have thought about this notion quite a bit, and have concluded that there are very serious reasons some of us play games online - and it ain't just boredom.

When you are incapacitated and have skinny support systems, you can bet the reward centers in your brain are not getting much action. And for those of us with a little brain power and the ability to tap a keyboard, computer games may be the only way any of these nurturing brain chemicals will be triggered.

So prime that pump. Go grow some lettuce on your pretend farm, and feel the satisfaction of harvesting and selling your crops.

Serve up meals in your pretend cafe, and enjoy feeding all those cartoons breakfast, lunch and dinner. It somehow helps to make up for the fact that most days all you can do is nuke a bowl of soup for yourself.

Watch your cash mount up in these games, even while you have no way of making money in the real world and can't pay your bills, and enjoy at least part of your brain feeling flush and well-padded.

Your brain knows this stuff isn't real, but in some ways it must be perceived as real because it feels good. It is reassuring to take on a little virtual challenge and ... succeed. The first few times I did this, it would leave me hyperventilating and ... afraid. Yep, I would feel afraid - the stress response kicked in big-time.

I was so used to not being able to make things happen, so used to things not coming to completion, so used to not having any success ... I almost couldn't believe it could happen in this little game. But it did. And the way it made me feel makes me suspect that maybe somehow there was some rerouting going on in my brain. And it was important.

I still think playing games is silly, but I still do it. And I am serious about it. I am pumping out as many positive chemicals as I can.

I don't know what they are, and I don't know how it works. I just know that the dry desert of my sense of satisfaction and pleasure about making things happen has been watered by these pastimes, and I need all the watering I can get. You'll have to excuse me, it's time to tend my crops.

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Gaming has been part of my management strategy since about 1993. While I have never discussed it in terms of getting some brain reward, I have discussed it in terms of experience control. Our lives are largely out of our control, carefully chosen games give us a sense of control, not just reward. There is something in our lives that is not chaotic and malevolent. That sense of control is a big feature in managing this illness I think.

Having said that there is the issue with games becoming too familiar that fits with a reward response. If its not new, novel or surprising, we get less of a brain response, less of that aha moment.

Added to which many games incorporate elements similar to gambling ... maybe around that corner I will find something nice, or in this box, or get given some reward for completing a mission. I play a lot of RPGs but tend to avoid FPS adrenaline-fests. If my adrenaline goes up I am in trouble.

So dopaminergic triggers are built into many games. Its what makes them addictive.

I have played a lot of Skyrim, though the record is Master of Orion, I think I played more of that than anything. Its a very old turn based space strategy game.

I cycle through my games, play one for a bit then a different one. In RPGs I play one character, then next time pick something different. Constantly changing and mixing things up does help keep the game from going stale. So does game rotation. I also think have different types of games helps.

 

carefully chosen games give us a sense of control, not just reward. There is something in our lives that is not chaotic and malevolent. That sense of control is a big feature in managing this illness I think.

That's exactly why I played games earlier on. Having one thing that worked according to a pattern, that I could predict and to some extent control.

It's harder now because I can't cope with so many decisions. But it's a good idea and I'll pick it up again when the time is right.

 

Yes, Civilization gives me such wonderful control over my cities, workers, and troops. There is no one around to criticize if I want to make economically unjustifiable decisions (which I do). The only thing really novel from game to game is the terrain, but that is fine with me. A nice predictable, me-in-control game is just what I need. (I just wish trade wasn't so difficult to manage in my version.)

 

Yes, Civilization gives me such wonderful control over my cities, workers, and troops. There is no one around to criticize if I want to make economically unjustifiable decisions (which I do). The only thing really novel from game to game is the terrain, but that is fine with me. A nice predictable, me-in-control game is just what I need. (I just wish trade wasn't so difficult to manage in my version.)

I used to design my own world, a replica of the Ancient Mediterranean, if I remember correctly (it was a good few many years back). Came to be one of my main 'hobbies'. I doubt now that the time I spent in pursuit of this would be as feasible under present circumstances. It would be very hard to pack it all in with the things I now need to do and find difficult/time consuming. Still, I am tempted to re-engage with Civilisation in light of your posts

N.B. I used to find CivFanatics a great help to me in the past. Not sure what they are like now though.

 

I too found CivFanatics helpful. I used some of their Game of the Month maps. It had never occurred to me to end a game early. I would build my space ship as soon as I could to be prepared if any of the AI civs build one, which they rarely did. I would wait until the last minute to launch my spaceship so I could continue building up my cities and throne room.

In consulting my notes, I find that the last time I played Civ was February 2012. {Sigh}

 

I too found CivFanatics helpful. I used some of their Game of the Month maps. It had never occurred to me to end a game early. I would build my space ship as soon as I could to be prepared if any of the AI civs build one, which they rarely did. I would wait until the last minute to launch my spaceship so I could continue building up my cities and throne room.

In consulting my notes, I find that the last time I played Civ was February 2012. {Sigh}

I for one never did build any spaceship. I had the settings to play in ancient times with - can't recall exactly - domination or some such as the victory condition. What can I say? I am an ancient history nut

 

What online games do you play?

I was avid gamer too but lost interest in most games when things started getting realy ugly. And not only in my life with the illness but in the gaming industry in general. Still play the isolated gem, such as Hotline Miami or Skyrim (which wasnt as good as Oblivion). In all honesty I think I would be playing and enjoying a lot more of videogames if I had good health, primarliy because I would have money to buy the new machines but also because with my health problems I have lost motivation (or energy?) to do things that used to be rewarding to me.

Let's seee..I play Dragon Age, Fable, Skyrim(though I agree oblivion is wayy better, especially modded), handheld console games(not big on platform console gaming besides old ps2 games). Then I MMORPG game, Ragnarok online, perfect World, going to start a new one once beta opens..and of course Elderscrolls online when it comes out, woot woot~
Reading and gaming are the only thing I have to do besides feebly walking my dogs, haha..Luckily my eyes have evened out so i don't get so nauseous playing, but i still have to pause and rest frequently. I went through a year period where I didn't even get online..it was just too depressing, but i've learned to move past that and accept things, so i'm starting to enjoy things again.

 

Hope Elder Scrolls Online will be up to the challenge! Thanks for reminding me about Dragon Age I must admit I dismissed it in the past but now the gameplay looks appealing.

As an exchange I will tell you this: Mass Effect is an interesting cross-over of shooter and rpg, with a rather profound role playing aspect to it, the atractive of futurism and great visuals. I say that the rpg aspect is profound compared with what is offered most of the time but could be a lot more.

 

Definitelllyy recommend Dragon age. One of my favs because you can switch up between characters and set a battle plan. I like games where split seconds decisions make a big impact on games also.
I'll look it up, I usually buy the farm on shooter games(..I can do archery..just not guns..haha) but i'm always looking to find one i can actually do well, haha. Unless its scary and has jump-out frightening moments..My heart just can't take those while i'm ill ,haha.

 

I really enjoyed reading this thread, and maybe at some point I can add a different game to my repertoire. I've never been a gamer, but since being home-bound & isolated I try to find ways to keep my mind stimulated. I'm playing a little less these days, but in the evening I tend to go to Lexolous on Facebook. It's like scrabble. Also play Mahjong on and off.

I used to be a bit of a type A, and also athletic before illness. I think the Lex game brings out this competitive side in me a little bit. I try to outwit, and think, strategize, etc. I have even asked people to play in French or Italian with me (although I don't really know the languages well enough). I simply figure out words the best I can with Latin roots as my guide. When I don't know a word, I go to wiktionary to look it up (after the play, I prefer not to use a word builder). So, I like to think I'm learning something too. (although never sure how much is retained).

When I'm super tired, I just play to play. Lexolous allows one to chat, so that can be nice too at times. When I play this in the evening, I also have a radio show on...to feed my brain as best I can.

I have no idea how to play some of the more "serious" gamer games mentioned here. I think adrenaline games would be a mistake for me too. Thanks everyone, for some ideas!