Fighting Fatigue

Sometimes I think the single worst enemy of the chronically ill, aside from the actual illness, is fatigue.  It’s pervasive.  It’s debilitating.  It lingers, and it won’t go.  It lowers your immune system, makes you more susceptible to pain, slows your thought process and just makes it nigh-on impossible to exist like a normal human being.  

It’s particularly bad when you start your week exhausted.  Those who read my last post will know that I was up until around 4am on Sunday night (well, Monday morning by that time) accidentally tripping my face off on tramadol.  Do not recommend.  The net result, for a girl whose alarm goes off shortly after 6am, was very little sleep.  I went in late to work so I could catch up on some extra rest (and wait for the horrific weakness and shaking to pass), but it wasn’t enough.  

The other thing about fatigue is that it is cumulative.  Each day of legal work, no matter how exciting, is tiring.  Your brain is doing a million things, you never have enough time to finish all the things you’d like to, and if you work in litigation, you are probably on the go between courtrooms, offices and the local corner shop for chocolate several times a day.  My spoons, never high at the best of time, were seriously depleted by Sunday night; each day took away a little more.  On Friday, I had literally none left.  I woke up so exhausted I could barely move.  The toilet door, all of two feet from my bed, seemed like a million miles.  Moving my arms to my phone to email work took everything I had.

This may seem like a lazy millennial exaggeration (not a stereotype I appreciate, by the way).  “Ugh, I’m soooo tired.”  Other spoonies know.  It’s exhaustion beyond the point of comprehension.  Literally, I was so tired I couldn’t understand it.  You feel pressed down by a physical weight.  It’s not like you’re underwater, it’s like you’re under mud.  Thick, quagmire, sucking-you-down type mud.  

Of course, because I was tired, I had no reserves to deal with the post-op pain.  Whether it was objectively worse than usual or I simply felt it to be worse, I’m not sure (although it felt pretty bad).  I also had a blocked nose, with a headache and sinus pain and a croaky throat.  Thankfully they have mostly passed.  I was convinced I was getting another interminable cold.  In any case, there was only one possible solution for this kind of exhaustion – to go back to sleep.

That’s the big problem with trying to fight fatigue.  You might be able to stave off the sleep debt for a few days, snatching extra hours where you can and chugging caffeinated beverages where you can’t.  Ultimately, though, it will always build to the point where it becomes so big a monster that you can’t fight it off any more and it simply overwhelms you.  I’m disappointed it got me on Friday, and that I couldn’t hold out one more day, but that’s the reality of chronic illness – you can’t always go the distance and you always have to pay the price for trying to.  

Spoon Theory

Have you heard people say, “I just don’t have the spoons for this?” and wondered what it means?  Well, let me explain.

Spoon Theory is a way of explaining the effort of living with a chronic illness.  Created by Christine Miserandino during a meal in a restaurant, it goes like this:

Imagine that you start a day with a bunch of spoons.  These represent your total energy for the day.  Now, if you are a healthy person, that bunch is probably quite large.  If you have a chronic illness, it’s not going to be as big.

Now, take yourself through your day.  If you are healthy, getting up, getting dressed and getting to work might just take one spoon away from you.  Let’s say you started with 24.  Now you have 23.  If you have a chronic illness, each of these tasks might take one or two spoons.  Let’s say four total, because getting ready requires a number of smaller tasks.  If you started with just 12, now you’re down to 8, and you haven’t even started work yet.

Now let’s go through what would be a typical day for me.  Let’s say I’m at the court in the morning giving duty advice.  I have a three hour shift there.  That shift by itself costs me one spoon.  Add in an exceptionally difficult customer and that’s another spoon gone.  Let’s say it’s a particularly mad week and I’ve got to go into court for someone – another spoon.

So if that three-hour shift took 2 or 3 spoons, I’m down to just 5 or 6 left for the rest of the day.

I have my lunch break.  A healthy person might gain a spoon from some food and a break.  I don’t.  I need it just to maintain my spoons at their current level.

In the afternoon I see a client (another spoon), do some follow-up work from the morning (another spoon), deal with the inevitable crisis, because there is always one (another spoon), and review my files (another spoon).  That’s four spoons.  I’ve just got one or two left, and I still need to get home, eat, shower, feed the cat and go to bed.  If my husband is away, I’ve also got to walk the dog and cook myself dinner (he is my wonderful chef most nights).  As you can see, there aren’t enough spoons in the drawer for that.  That’s how I can end a day without having done much at all and still be totally and utterly wiped out.  I certainly can’t do what other people can do after work – go to a class or the gym, or spend time with friends.  If I do that I won’t have enough spoons left to do what needs to be done.

Now, some days I might have more spoons than others, and sometimes I’ll gain a spoon during the day if my pain suddenly vanishes or my meds kick in and give me a burst of energy.  On the other hand, if I forget my vitamins or suffer a flare-up, or even just have a cold, I’ll have even fewer spoons.  Right now I have the flu, a sinus infection and gastro (thank you, depressed immune system), so my spoon count is pretty low.

Some spoon-raising factors include good self care, such as getting a good night’s sleep, eating three good meals, staying hydrated, sitting in the sun for a few minutes and just enjoying life, taking all my vitamins, and waking up pain free.

Spoon-reducing factors include flare-ups, sickness, waking up in pain even if it later goes away, failure to look after myself, a late night or early morning, a bad dream, difficult people or conversations, and stress.  The longer a flare-up goes on, the fewer spoons I will have each day as exhaustion, prolonged pain and depression eat away at them.

One consequence of this is that chronically ill people have to be super aware of our spoons.  I am not always very good at this and frequently overestimate my own abilities, leaving me without the physical resources to be useful in the latter part of the day.  Generally speaking, though, I am aware that I live life in a series of trade-offs – if I do X, I can’t do Y.

Up until this little flue debacle, things were going relatively well – last week I had sufficient spoons to do something after work every night of the week, whether it be walking the dog, writing a blog post or driving thirty minutes to see my parents.  Sure, some nights I was cutting it extremely close to the wire and had to massively overcompensate with caffeine on Friday which led to terrible pain on Saturday (see?  Trade-offs) but overall I was pretty well supplied with spoons compared to how I had been just two weeks earlier.  This week, not so much.

Have you heard of spoon theory before?  Do you ever use it when explaining your illness to others, or do you have other methods you prefer?  Share in the comments below.