Wednesday, September 03, 2008

Cleaning and counting spoons

There's a very popular theory out there, a way of coping with life for people with fibromyalgia or lupus or chronic fatigue syndrome called "counting spoons". This is a link that explains it far better than I could.

Ok, go read it.

When you're done, here's how I do things a bit. I don't always count spoons, or at least I don't call it that. I know that I have a finite amount of energy and that if I push myself, I'm going to be hurting. For example, I'm dead-tired right now, but I can't sleep because my muscles hurt too much. That's part of the fibromyalgia. The direct cause of this is that I went for a 35 minute walk on Tuesday morning with my dad and then ran around like a madwoman doing errands for most of the day. It was tiring. It was done on very little sleep because my allergies are not treating me kindly. Suffice it to say, I'm paying for that walk right now.

The way I view my days, instead of with "spoons", per se, is that I have a certain amount of energy. I have far more things that I want to do than I have the energy to do them in, but there are some that come first. I could give you the generic list, but let's break down my current priorities as an example.

These are things that I feel like are my small victories every day I do them:
  • Get out of bed by a reasonable hour--you know, how the rest of the world functions
  • Shower, get dressed, remember to eat three meals a day (I skip lunch sometimes by accident)
  • Exercise (because as much as it hurts, it's actually benefiting my overall health)
  • Go through my daily work checklist (This lists four major areas of work that I want to get done each day, including answering a specific number of e-mails. I've been using it for the last month or so, and it's HELPING. If I can get this moderate amount of work done, even if I feel like crap, then it's a good day. Some days I do more work, some days I can't get as much as I want done--but the point is to get through that checklist every single workday.)
  • Write
  • Help my husband with chores
And the last one is where the whole point of the post comes in. Say I get up at 8 am or so, which is what I've been trying to do. Say I get everything on that list done including, if I'm lucky, some writing. By the time Chris comes home at about 7pm, I am physically and mentally exhausted. I can sometimes throw a load or two of laundry in. I can sometimes help with dinner. Most of the time, I'm zonked out though because all those "spoons" I've started with are gone already.

When you have a chronic illness, there is no way to manufacture more spoons. You start with that finite number of them, and when they're gone, it's all you can do to remember to take your medicine before you fall asleep.

But there is a way of getting around the problem of the spoons, and that's to work more efficiently. That's part of why I have my daily work checklist, because once I get that done for the day (which can take me anywhere from four to six hours, depending on other factors), I can let myself concentrate on doing other things that matter to me, without feeling guilty that I haven't done as much work as I *think* I should do (hello, closet perfectionist here!).

So I get the checklist done and then I can give myself permission to clean. Or to do dishes. Or to do a load of laundry. Things which are commonplace for most people, but which I have to balance. I can either be a housewife and have a clean house and not be an agent. Or I can be an agent and fit the cleaning in as a "reward".

(Yes, Mom, who is reading this post--feel free to faint, voluntarily cleaning as a reward!)

And so I find myself in a complete role reversal of how I've felt about chores my entire life--being able to do them, even in little spurts, is my reward now because I feel like I've managed to juggle my energy properly for that day. I'm able to act as close to "normal" as my body will let me.

And it's a pretty cool feeling, even if I do pay for it sometimes, like right now. =)


BuffySquirrel said...

I want my spoons back.

Keri Ford said...

This is a timely post, Jenny. (long time lurker) I was diagnosed with fibromyalgia about 3 weeks ago. The very early stages, thank goodness. The meds have made a world of difference, but I’m still trying to figure out how many spoons I have in a day. Some days it can be so hard to do some sort of exercise, but I feel a hundreds better after I’m done. Good luck managing yours!

Ryan Field said...

My other half has a chronic illness and we've learned to adjust our lives accordingly.

Jolie said...

Well. This was a wake-up call. Thanks for the link to that story.

I don't know anyone who has to live this way, but I do have a close friend with a multitude of health problems. They usually don't deplete her energy or cause her pain on a daily basis (which is fortunate, because she has an energetic personality and loves to stay busy), but they occasionally cost her entire days if she's feeling sick, and there are "normal" young-person activities she can't participate in unless she's prepared to feel ill all the next day.

That's just the routine stuff, though. The bigger stuff, like shortened life span and inability to have children, can be seen as blessings: she lives a colorful life and takes nothing for granted. I believe I'm a better person for knowing her. I'm sure a lot of your friends feel the same, Jenny.