Wednesday, June 23, 2010

The Spoon Theory and Mental Illness

I wrote about the Spoon Theory last Saturday, and have since adopted that particular form of thinking. So when a sudden bout of exhaustion hits me, I'll say something to the effect of, "Ugh! I'm suddenly out of spoons. I need to lie down."

Oh, a brief note before I go on. Christine Miserandino's "Spoon Theory" was a cut and paste. There might be concern because it's copyrighted material. The thing is that I didn't profit from it in any way. All I did was share that which has been spreading around the web. I could have linked it, but not everyone follows such links, and I wanted to share that which came to mean a great deal to me in an instant. I made no claim to it being an original work, so...Yeah. No real worries there.

Mental illness puts a spin on the spoon theory. Assuming Christine is correct, the disabled person starts with so many spoons per day. We'll go with the 12 she handed her friend. This represents the physical side of disability. And while she has an incredible outlook on life, it's a documented fact that those with physical disabilities usually suffer mentally. Now let's say the person with the mental disability has PTSD and severe recurring depression, just like me. It's a normal day with nothing extravagant planned.

Right. Normal day. Here in Kansas, that could mean waking up to the sound of thunder and rain coming down so hard on one's home that one could mistaken it for Armageddon. No problem. I've been adjusting to the weather here. I get up, take pain meds so I can move, and sit at my computer while I await their activation.

Then a lightning bolt hits very close to home, and the sudden crack of thunder interacts with my PTSD. I scream in brief terror and jump in my seat. Once my heart has resumed its normal pace, I realize that that one incident caused me to drop three spoons. I'm down to nine for the day in an instant.

About an hour later, my painkillers are working and I'm feeling a tad bit more mobile. I shuffle into the kitchen to see what's around to eat. The entire breakfast routine burns a spoon.

While I'm in the kitchen, I see I'm running low on my latest addiction, diet root beer. Time to assess my day. Am I feeling up to a snack run with one of my housemates? Sure, it'll be good to get out of the house. However, I am immediately drained of another spoon when in my housemate's car. He needs his AC fixed. The heat, humidity, and raised pollen count establishes a minor wheeze in my lungs. I take a pull off of my inhaler, but the damage has been done.

Shopping takes another spoon from me, especially with my bum knee. I make the best of it, despite being drained of what seems to be an inordinate amount of energy. I'm at six spoons.

Another spoon goes away when I get home. I feel grotesque. I sweat so much that I think I lost a stone. I shower, hence the spoon burn. Getting dressed doesn't take anything out of me, as I simply throw on underwear and a pair of shorts.

Because I'm a late starter on the day, my beloved Becky is home from work and online by the time I'm cleaned up. We get on Skype and chat, play games, or just stare at one another through our video cameras. It's the best spoon burn of the day, and leaves me with four as we head into evening.

I've been a combination of conservative and lazy. I know I only have so much in me each day, and I try to keep extra spoons in reserve. I mean, there are people who rely on my to be the voice of reason when they're in psychological crisis. While it's all well and good that I have become a symbol of hope, sometimes I avoid being available for such crises, as I, myself, have become a spoonless wonder.

Becky and I say goodnight after many hours chatting, and I'm still a four-spoon man. My housemates handled dinner, saving my the energy, if not the finances. So one would think I've actually done rather well for myself...

...until I start thinking. Yes, it's been a good day. I got things done. But my knee is now swollen from shopping, and has been feeling like it's going to fall apart at any moment. Despite taking more painkillers throughout the day, I hurt. I try to dwell on the new light in my life, Becky, and think how lucky I am to have found her...but it just doesn't make sense. How does a guy as broken as me end up with such a beautiful woman like her? I'm also lucky for my housemates, who are understanding that my activities are limited. Beyond that, I sit around on most days, accepting a government check for being disabled, and play computer games. I would get a job I could perform at home, except that it would obliterate my insurance. These thoughts ricochet around my brain in only a few minutes, and before you know it, I'm in a depressive slump.

Remember the four spoons I had? I dropped them. They're gone. It could have happened much earlier in the day, so I was relatively lucky. Now, at the end of the day, I am a spoonless wonder, and all I want is to go to bed and ignore the world. I need to get to sleep before I start dwelling on how much better the world would be without me.

I suffered just such an episode last night, dropping all of my spoons in a matter of moments.

It could always be worse. Someone with severe bipolar mania might drop all of their spoons when they wake up. Schizophrenics are probably unaware of how many spoons they have at any given moment. Someone with a worse case of PTSD than mine could end up stabbing people with their spoons. And substance abusers, who are usually people with one mental illness or another and are self-medicating, are replacing their spoons with chemicals, only to discover when it's too late that their "new" spoons do incredible amounts of damage to their bodies.

I could probably expand this. Not sure if I'd copyright it, as Christine did. Not a first draft like this, anyway. But this is my personal addition to her theory. My hope is that is will further expand understanding when it comes to disabilities. Not everyone is handicapped by something that's malfunctioning physically. Sometimes the problem is in the brain's wiring.

And so, with that said, I'm off. The power was out for about an hour this afternoon. The gathering heat here at home drained me of a spoon or two. Oh, we have power back, but the spoons don't regenerate that swiftly. It takes sleep for that to happen.

May all of my readers be well and spoonful. =)


Anonymous said...

Thanks for this superb explanation of the mental illness perspective on the Spoon Theory. I first encountered the Spoon Theory posted on the wall at the rheumatology clinic where I was a clinical research assistant. It hit SO close to home for me, chills down my spine sort of way, which I chocked up to my bipolar disorder (fairly well managed, yet still very draining of spoons just to self-manage what my meds can't do to keep me functioning...) A year later, I found out I also have Lupus. What are the chances. For the longest time, my primary doc thought I was in the worried-well category, bordering on hypochondriac, and had me fairly well convinced. I am mentally ill, after all... As it turns out, I found a great rheumatologist who specializes in neuropsychiatric lupus (NPSLE) and although I may still have bipolar from a separate, primary origin (my dad has it, and my mom has a weird mixed up case kinda like mine, plus a lot of rheumatological issues... Hmm) my anxiety, mental disorganization, variability in cognitive function, and even some paranoia and soft psychosis, are probably all spurred by inflammatory activity in my brain from the lupus.

What I can say after a year of highly active lupus (thankfully well-managed for the past 5 months or so) is that the neuropsychiatric components are far more exhausting, disabling and downright scary than even the physical symptoms. My physical symptoms aren't quite so bad as Christine's, thankfully, but all the same those spoons fly out the door like crazy. Literally ;) A note on your analogies, too... I only ever have hypomania, not full-blown, but it gives you a sense of far more spoons (more like you said in your drug use analogy.) However, these are borrowed spoons against future days, and all of us living within these constraints know how awful it is to wake up with fewer spoons than usual! For the double-whammy, for a bipolar person, this happens the exact same days as your mood sinks into depression, taking away more spoons in itself (though I'm pretty convinced the spoon overuse is actually part of what causes the downturn... And brain spoons are the most precious and precarious that exist!)

As someone with a bachelor's in neurobiology, this is of course a fascinating topic for me (oddly, I didn't know/acknowledge my own bipolar patterns till I was diagnosed 6 months after graduating...) However, being as fragile as I am, I won't be pursuing the MD-PhD I once upon a time thought I might to be a research neurologist-psychiatrist or the like. Talk about a waste of spoons when life is so short and difficult the whole time... I settled on speech pathology, which will allow me to work part-time and spend the other part taking care of myself, including dancing and surfing like I love to do. Or maybe a family if I can get it together enough. We'll see how it goes. I spent the last year preparing myself for anything, including the possibility of disability checks and complete dependence on a spouse (if I'm lucky enough to land a good one!) Accepting that new reality is the biggest challenge I've ever worked through, and the most worthwhile: I can live well and happily in whatever becomes my life, because it is life and a beautiful thing to be living. Of all the problems I face, I hate the depression the most because it robs me of that outlook!

Good luck managing your spoons, and thanks for taking the time to write and this share yours with all of us :)

-Anonymous, for obvious reasons of potential discrimination
(which breaks my heart... I promise to publish a book someday, under my real name, when I'm more established. I hope it will make for an interesting read, and perhaps make me some money after all this hustling to get by!)

Unknown said...

I would add one thing: Sometimes the littlest thing can hand me a bunch of spoons - some good news regarding something you were worried about, or a hug from a friend, or listening to the right music. There's just no guarantee that those things will happen, or that they'll give you the spoons you need.