Tuesday, July 11, 2006

The dish ran away with the spoon

Ballastexistenz wrote this excellent expansion on Spoon Theory. If you’re not aware of what Spoon Theory is, the original can be found here (see also Beer Theory). Spoon Theory is basically the idea that those of us with limited energy have so many spoons we can use every day, and every single activity uses up so many spoons. The things which other people take for granted like getting dressed or washed or making a snack all use up spoons. And once you have run out, you have run out, so life with these sorts of impairments necessitates careful planning and a constant reassessment of activity and energy levels.

Do go read what Ballastexistenz wrote about it. Perhaps the most interesting thing I found in reading this piece was the amount of empathy I had for Ballastexistenz’s experience as an autistic person, struggling with her interactions with other people.

I am not autistic, but I believe that dealing with other people is, without a doubt, the most exhausting thing that all of us are obliged to do on a regular basis. A friend of mine is severely affected with my condition and at one point, was trying to build up her mental stamina. She did this by having a family member come into her bedroom, sit down and remain in the room, in silence, for fifteen minutes at a time. When I first heard this I was a little baffled. How can the mere presence of another human being - especially one you know well - test your stamina?

Fortunately, I have never been that sick. And it wasn't really until I read Ballastexistenz's post that it made complete sense. My friend (so far as I know) isn't autistic either, but as soon as another human being enters the room, there is mental activity taking place. For myself and most other people, this activity is too slight to pose any sort of challenge.

Please note, I'm not comparing one sort of condition with another, I'm not saying, when we're really exhausted, we're all a little bit autistic or any such nonsense, only that these particular issues can be similarly challenging to different people for very different reasons.

Another comment I heard recently from a person with my condition was, "I always know when someone has the Dreaded Lurgy - you can tell just by looking at them. You can tell if they have been misdiagnosed, as well. It's a certain expression, a glazed look; folks with the Dreaded Lurgy don't ever make eye-contact with you."

Now I had to disagree because I do make eye-contact with people. But I am conscious of this fact because it is often quite an effort. And it is very difficult to maintain eye contact at the same time as speaking or listening. For a long time, I thought this was just me, because I don't get a whole heap of practice; I haven't been required to make eye-contact with anyone other than [...] in the last ...four weeks, because I haven't seen anyone else.

But reading Ballexistenz's post and thinking of discussions I have had with other people who have conditions characterised by fatigue, I begin to think that perhaps a lot of problems that I have put down to inexperience, ineptitude and misanthropy may be more to do with the challenges of limited energy.

In psychometric tests, I usually land just left of the middle on the introversion-extroversion spectrum; I am quite happy in my own company, but I am really very interested in people. In truth, much of the time by myself I spend thinking about other people; the people I care about, social and political issues or else the characters in my book.

However, the more tired I am, the more introverted my behaviour, the more social niceties (for lack of a better phrase) become a tremendous effort.

For example, my parents have been decorating their living room. This has been a big task because they opened out the structural fireplace (they thought it was an inglenook; it wasn't, but it has that effect). There was also a long saga involving which particular shade of yellow they were going to paint the walls with - you know the sort of thing.

Now I know how to have these conversations. For my Mum, it is news and it is my job to receive this news with interest. When I am less tired, this is no problem whatsoever:
"We've changed our mind about the paint again," Mum says.

"Oh really?"

"Yes, we've decided to go for a sunshine yellow as opposed to a canary yellow."

"Oh right, because I did think that the canary yellow might turn out to be a bit too yellow."

"That's right, it was. We had opened one of the paint tins but they shop will exchange the others."

"Well that's good."

and so on. This is no problem; I'm not especially interested, but I don't find it boring or tedious or difficult in anyway. This is a normal 'healthy' conversation. Another person would be better at it than I; for example, my sister is quite interested in the subject of paint, so would probably have more insightful comments to offer.

When I am more tired, it is far more difficult. The conversation goes:
"We've changed our mind about the paint again."

Complete silence from my end. I really can't think what to say. What am I being asked to say? I am entirely indifferent to this news. What am I supposed to feel about this change of heart?

"Are you still there?" Mum asks.


"We've decided to go for a sunshine yellow as opposed to a canary yellow."

Complete silence again. I'm preoccupied by what difference there might possibly be between these two colours.

"Are you all right?" Mum asks. "I'm not boring you am I?"

And I'm never so tired to forget the Golden Rule; do not allow your mother to think you are bored. Apart from anything else, it's not boredom. It is the lack of an opinion combined with the fatigue-induced inability to... bullshit would be too strong a verb. I suppose it is a fatigue-induced inability to be nice.

All this can make me seem rather anti-social. I am not naturally good at small talk, but in this state I resent people talking to me about nothing because I am having to work so hard to process their nothingness. I become very discriminating about those individuals upon whom I choose to spend my energy.

This is something which is met with very little understanding, because it is universally acknowledged that social activity, spending time with other people, meeting new people is good for you. And it is, it really is - I often long to be around other people. Only, I think it would help to acknowledge the fact that it is also very costly; in far more ways that the practical effort of getting somewhere and staying upright for the duration.

Anyway, I am rambling a bit (and running out of spoons) but I wanted to post something on this while Ballastexistenz's post was still fresh.


Sally said...

Dear Goldfish

I wish you were able to train your Mum like I, as a Mum, have been trained by my 'bump' who has M.E. However, I do appreciate that to engage in such training needs energy from you.

My training is far from complete, as I do often say things that betray my fundamental flaw that likes to get involved and sort things out.

But my training has shown me that if she seems to be thoroughly turned off by the thought of her Mother on the phone, on her case, on her doorstep (never without permission), its nothing personal, its just what she needs for her needs at the time.

And as she is more ill than me, her needs have priority. And she is scary when roused.

Mary said...

Head goes boom, and people close in - even if it's only one person they are all around you. And they are saying "what do you need? Do you want a glass of water, do you want this, do you want that," and there's no easy, polite or possible way to say "I want you to get out of my face for just twenty seconds while I fight through this brainfog and work out what exactly it IS that I need!"

My mum, bless her, always looks across at me when I've slumped and have tears running down my face with pain, and she says "I think it's time for you to go home and get some sleep now". It really takes all my reserves to explain that no, I *can't* go home right now - I need to take my painkillers, sit very quietly for five whole minutes doing breathing techniques *and nothing else*, and then a further five to ten minutes continuing to sit still but maybe having a very slow, quiet conversation while the painkillers do their thing.

Trouble is different people work in different ways. My mum's health is very different to mine, she is ill but not with ME, and for her the "I'm in total pain now, one last burst to get home" is the best approach and one that works for her. People tend to assume that what works for them, will work for you.

Anonymous said...

Hi Goldfish!

The reason why dealing with social situations tired me out so much all made sense to me when Robert Winston in his "The Human Mind" series (http://www.bbc.co.uk/pressoffice/pressreleases/stories/2003/09_september/08/human_mind.shtml) said that going to a party is one of the most demanding things that our brains have to deal with.

I can usually deal with one person at a time, though some people seem to be harder to "read" and so difficult for me, but if I have to deal with 2 or more at a time then I'll use up all my energy really fast.

Anonymous said...

Hey Goldfish

I understand what you mean about lacking the energy to be nice although my personal situation is more analogous to a current account than spoons. This is because I can sometimes venture into the red for a short while (although I have to pay back with compound interest later).

Anyway, I was quite gratuitously unpleasant to a mate at work yesterday. He was bringing me something which I had asked for and which normally I would have been very pleased to get. However he presumably thought it would be amusing to sneak up on me and grab hold of the back of my orthopaedic chair. Being both totally cream-crackered and also in more pain than “usual” for that time of day, I was less amused. Before I even had time to register who it was, I had uttered some very scathing and unchristian comments. As he is a decent bloke, once I had calmed down a bit I overdrew an extra spoon and tried to explain, but he was visibly shocked by my initial outburst.

Of course he is now in continuous, genuine and abject apology mode – which makes me feel about six inches tall,

People are just hard work aren’t they?


PS And today at 10.30, I have a day-long business meeting with 3 friends and 7 total strangers. Wish me luck!

The Goldfish said...

Sally, 250 miles helps on the parent front, and I do operate a precise schedule with their phonecalls so I can pace myself around them. But I do think that my Mum in particular, really suffers to know that I'm not doing so well, so I always work hard to be able to sound all right, if you know what I mean.

As for your desire to get involved and help, I think you were condemned to that when the embryo implanted itself on the lining of your womb. My Mum would give her right arm if she thought it would make me better - she'd saw it off on the mere off-chance it would make me better. After ten years, my being ill may remain a much bigger thorn in her side than it is in mine...

Mary, having someone else who is ill about doesn't always help. People tend to assume that your pain and fatigue is exactly like theirs and needs to be addressed in the same way. Recently I spoke to someone with my condition who was alarmed that I took painkillers at all - let alone the opiates.

"Oh, I always had the pain but I wouldn't like to take anything for it," she said. It is very difficult to say that perhaps their pain isn't as bad as yours (and indeed, through several years of my illness, I had the pain but it only hurt intensely for short periods and I proudly resisted prescription meds. But uh, things change...)

Paul, Thanks for your comment. I enjoyed the Human Mind series too. The Human Mind website has some fun tests, like spotting fake smiles (something I seem bizarrely good at) and personality tests.

Dude, bit late to wish you luck with your meeting but hope it all went well. :-)

BloggingMone said...

That spoon theory is really fascinating. thanks for the link to Ballastexistenz' post on it.
The human mind site is very enjoyable and of course I could not resist doing the "fake smile" test.

Dylan C. said...

I have a physical illness and sometimes I can't speak to people because I'm too tired or I don't want to speak to them much. I'm still aware, like you, that I'm "supposed to," but I really don't want to/can't. If I'm still not completely exhausted, I might know what it is I could/should say but it's just way too hard. If I'm completely utterly exhausted, I don't bother to try to think of what it is I am expected to say. Sometimes I just say "Mmm." I approximate. Or I say, "I'm too tired to talk any more." My friend who is autistic also stops being able to talk sometimes if he's tired, but he usually doesn't say he's too tired to talk. He gets confused about what to say or how to process the entire interaction and render it verbally to me or someone else.