Monday, March 19, 2007

Activity, cost, and Spoon Theory

One of the trickiest things to keep on top of is calculating the costs of each activity I do, prioritising the activity, and figuring out if I can do it or not.

The beginning and end of the spectrum is easy. There is "rest", which is lying down or sitting very comfortably, in a warm, safe and quiet place, with my eyes shut and no distractions. It may or may not involve actually falling asleep, but the important aspect is making the time as uneventful as possible for both my brain and my body. Rest helps me slowly gain some energy.

At the other end is "impossible activity". A few years ago it was perfectly feasible for me to rollerblade along the seafront with an ice-cream in one hand and be chatting on my mobile phone in the other. These days, I simply do not have the capacity to do that, which is something I've come to terms with. It was fun, but hardly a life skill.

The bits between "rest" and "impossible" are tricky though, and they vary for every person with ME/CFS and similar illnesses. For everything I do, I have to think about how much it will cost me, and whether that will prevent me from doing something else that may be more important or more enjoyable.

Let's take reading as an example. I've enjoyed reading from a very early age and it used to be one of my top things to do to relax. Now I can't read any whole book at one sitting any more, fair enough, but there's more to it than that. These days, reading isn't just reading.
Low-cost: Reading a book from my personal collection which I have read many, many times before.
Medium-cost: Reading a book I have not read before, but by an author I am familiar with and whose style of writing flows well for me.
High-cost: Reading a book by an author who is new to me.
Near-impossible: Reading a non-fiction book which requires the reader to keep up with concepts that may be new to them. For instance, I've had The Science Of Discworld for about a year and I am still less than halfway through it.

The same sort of thing applies to everything I do during a day, fun or not, essential or not, productive or not. It applies to getting up and having a bath and getting dressed and washing my dishes and buying a pint of milk, and it also applies to knitting, using the computer, shopping (yes, even online), watching a TV programme, cooking, seeing friends, chatting on the phone or playing a game.

Some people have the idea that anyone who is off work long-term must be sitting around all day doing the sort of thing they would love to do if only they weren't at work. It's not the case. Not only would I need to be having a good day to attempt half the "day off" things I used to, but as soon as we've factored in stuff like housework, forms for several different benefits, and family commitments, it's an almighty mess.

The best explanation I have ever encountered for this is Spoon Theory. I really recomend you click that link, but if you don't want to, here's the summary:

People with illnesses like mine start each day with a limited number of energy credits, represented by a handful of spoons. Some days it's a good day and you have more spoons than usual (although still not as many as a healthy person might) and some days it's a bad day and you've only got half the spoons you're used to having. Doing things costs you spoons. Resting may make you a spoon or two if you're lucky, but it's not guaranteed. If you spend all your spoons by lunchtime then that's just tough if there's something else you want or need to do later in the day.

Physically do this. Get your handful of spoons (or pens, or knitting needles, or whatever - just one handful though!) and go through your day. Waking up and forcing yourself out of bed? Spoon. Having a bath? Spoon. Washing your hair as well? Another spoon. Getting dressed? Spoon.

Of course, this is what happens to healthy people when they get a bad cold or something. They drag themselves into work wearing an unironed shirt and brushed but not styled hair, get frustrated because they can see that they are performing at a level of less than 100% and are making mistakes, go home, and collapse into bed with a cup of lemsip and some takeaway food. And that's okay, because for a week while you have a cold, you can let things slide - the washing up doesn't HAVE to all be done every day, you can catch up on the laundry when you feel a bit better, your friends will understand that you've had to cancel on a planned get-together, you'll absorb the £5 charge for late payment of a bill in order to not have to worry about getting to the bank this week.

Chronic illness is different. You can't simply skip the vacuuming for three years. Your friends will stop inviting and including you if you never join in, and as a human being you need some social contact. The clean clothes in your wardrobe will all be used up after a few weeks. If you don't get yourself into town, go to the bank and pay your bills, you go past Final Demands and bank charges and into the realms of baliffs at the door. You have to stay on top of everything that needs doing.

So you have to get on, and calculate every activity every day. You have to balance and you have to decide if the fact you have no fresh clothes to wear is more or less important than the fact your cups and dishes have almost invented the wheel. You have to decide whether to read a few pages of a new, interesting book, or to read a familiar book and thus be able to chat to someone on the phone for 15 minutes. You have to be able to tell your friends that you don't have the time or energy to see them, because you've got to use all of that day's spoons on eating three basic meals and filling in a couple more pages on a poxy horrible benefits form.

I can deal with the pain, and I can deal with injuring myself when I fall over, and I can deal with the poor sleep and nausea and fits and all these physical things. But I have real trouble keeping positive while dealing with the constant comparing and choosing and juggling and never being able to forget for even a day about being ill.

And THEN some bugger tells you that you'd feel ever so much better if you just went jogging for an hour each morning... I think that's another post though.

11 comments:

Pete the Caitiff said...

Wow! Fascinating theory (I clicked the link). It explains a lot. My Dad has Parkinsons and its hard enough to be around him, seeing thats there's all these things he wants to do, but is physically unable to do at that moment. The look on his face is heartbreaking. It wasn't until I read about Spoon Theory that I even had an inkling of what he is going through.
I want to write something about how brave you are, but I can't think of anything that doesn't sound patronising. You get the idea though.

Mary said...

I did say the link was worth clicking... :)

However, I must pull you up on something. Brave is rushing into a burning building to save someone with no thought for your own safety, or choosing to walk through a town bristling with armed soldiers to deliver Red Cross food packages to starving children in the middle of a war.

Brave is NOT getting lumped with a situation you have no control over, and doing your best to deal with it because, what choice is there?

I'm not brave. I'm a big wimp who would opt out of this situation in a second if I had a sniff of a chance.

"Persistent" or "bloody-minded" might be better words to use :)

The Goldfish said...

All I can say is that you will get better at this with time. I know it's been a while already, but... Much of this juggling becomes second nature; you don't have to do the calculation, you just know.

Of course, over the learning process, you may find that there are some things which you can simply not afford to do - things you haven't been stopped from doing, but things which are so very costly that it isn't worth it. And that can be immensely painful - it's usually the fun stuff.

You do, of course, have to start from scratch when your energy levels improve or decline (improvement is, in many ways, as scary as relapse).

But honestly, you will get better at it, it will stop being such a conscious process. And if you get good at it, you put yourself in a good position for long-term spoon investiment with dividends (uh, a fork, perhaps?).

Mary said...

It is getting easier to juggle as time goes on, but it is very much still a case of juggling. And I still find myself stuck in bed wincing with pain thinking "oh god, I wish I hadn't done XYZ" on a fairly regular basis.

That said, I can usually convince myself that XYZ was worth it because I'm not doing it every week.

I'm scared of not doing anything. I could have several spoons left at the end of a day if I never got dressed, rarely bathed, insisted on the doctor making home visits, did a weekly online shop consisting of the same seven microwave meals and a loaf of bread, cancelled the internet connection and employed a cleaner with the money... but it seems like that would be a very difficult trap to get out of. I desperately want to stay at least semi-functional in the hope that I will improve and be able to increase my activity rather than "starting over".

Simon said...

I just wanted to express my sympathy for your condition.

I was "ill" for about 2 years, I thought it would never go away. Eventually, I had my mercury fillings replaced, discovered I was allergic to many foods, and removed sugar from my diet entirely.

I am now back to full health and it's wonderful :). I hope you won't think that I'm gloating (I'm so not), but I understand how terrible it is being long-term "ill".

The best of luck for finding a cure some how.

Love

Simon.

Mary said...

Thanks Simon. Got to be honest though, it's up to the doctors to find the cure (or even the definitive diagnostic test) and then they can tell me when I go for my next routine checkup.

I've seen too many desperate people spending hundreds if not thousands of pounds as well as 99% of their waking hours on hokey treatments that rarely work, and indeed sometimes are damaging. The way things stand for ME/CFS at the moment, I've got as much chance of getting better simply through the passage of time, as I have of getting better through whatever treatments, supplements, spiritual healing, etc, that anyone wants me to try.

Meanwhile, I'm just doing my best to accept and "work around" the limitations imposed on me by being ill. That way even if I'm like this for ten years or more, I won't have totally missed out on life.

Pete the Caitiff said...

Yeah OK, brave is the wrong word.

Sheer bloody-mindedness is an acceptable alternative :D

I suppose it helps to have people who care, that you care for too (Stevie, your mum and Chris, Pip and little'un etc)

Mary said...

Yep, Steve and mum and Chris and Pip am all the bestest. Don't know what I'd do without them.

Jo said...

Ooh, I've fixed my security settings, I can comment again! Just wanted to say, I wouldn't manage to run for an hour each morning, and that's *without* struggling with an exhausting disability! And yes, the link was worth clicking.

Mary said...

Jo - what difficulties were you having? Cos a couple of other people have had problems too, mostly with the CAPTCHA, someone had a day where they were typing it in right and it wasn't being accepted, and Steve hasn't been able to see the actual graphic of the CAPTCHA in months - just a red X.

Jo said...

I blocked cookies from www2.blogger.com, so all I got was text saying "visual verification", instead of the actual visual verification. Once I figured out which cookie it needed and unblocked it, it was fine. I was also having the problem with typing in the letters correctly and being told it wasn't correct the first time (but fine the second), though I'm not sure if that was here or on other blogs, so I think that was a problem with the CAPTCHA (I initially assumed it was a problem with my eyes/memory). Actually while trying to leave this comment that just happened again ...