[TAE] Being Careful With The Spoons

Tuesday, July 23, 2013

A strange title for a blog, I imagine – but not if you have ever heard the term “spoon theory” before. I’ll start with a bit of an explanation of that. I first read about spoon theory a few years ago on a blog called “But You Don’t Look Sick,” and the article was called The Spoon Theory. The article was written by a person with Lupus, and what it came down to was that they were trying to find a way to explain the difficulty of their everyday life to someone with no disabilities.

The gist of spoon theory is this – (the spoons can be replaced with anything you like – I have thought of mine as spoons for so long that it’s kind of stuck) – each day when you wake up, you start out with a finite handful of spoons. For each action you take, you must “spend” a spoon – taking it out of your hand for the remainder of the day. You won’t get it back until the next day at the earliest. Some days you begin with fewer spoons, and other days you begin with more spoons. Sometimes you can ‘borrow’ against the next day’s allotment of spoons, but as you do so you realize that you won’t be back in balance for the next two or three days. The only constant is that the number of spoons is finite and once you’ve spent them all for that day, you won’t get any more.

For people with chronic pain like me (the diagnosis of advanced disc degeneration in my lumbar spine is pending MRI confirmation, but from the pain and other symptoms, my doctor is fairly certain), spoon theory is a daily fact. And it makes accomplishing even the things most people would consider trivial everyday actions into something that has to be very carefully considered and planned for.

Let’s say that I get up in the morning – I’m starting with twelve spoons – and the pain isn’t too bad. I can make it through my morning routine without the use of my cane. The routine has cost me around three or four spoons. I have my day mostly planned out – I know I’m going to spend three of my spoons for the day on doing laundry. Another two will be spent going out and doing grocery shopping, which leaves me two spoons left to do other things like dishes, cooking, and incidentals. This day, I make it through and at the end of the day, I have one spoon left. This was a good day – I’m not exhausted by the end of the day, I’m not in excruciating pain, and everything I needed to do has gotten done.

Unfortunately that is the uncommon occurrence.

Most days, I find myself with ten spoons allotted to me and fifteen spoons of things to do. As much as I try to ration my spoons, it ultimately means that at the end of the day I have no spoons left – and a lot of what I needed to do hasn’t gotten done. This results in a level of pain similar to a hot poker being shoved up my spine and twisted. My hips tremble and refuse to hold me up. I have to lean heavily on my cane in order to walk. If I drop something on the floor, I can’t bend to pick it up. Simply standing up from a sitting position sends shocks of white hot pain through my lower spine and hips as the vertebrae grate on each other.

The pain is so bad that I can’t sleep – and even under the effect of Vicodin (I never let myself take more than two a day, even though my dose says I can take up to 4 a day – I only get 30 pills at a time and I don’t like refilling more than once a month if I can help it, since my “insurance” doesn’t cover pain medication), I end up only being able to sleep two or three hours at a time either sitting up or lying down before having to move.

During the summer, my spoon budget is reduced further by heat, humidity, and (worst of all) “summer insomnia.” There was a time when I could literally fall asleep at any time, anywhere. But that was years ago – now, in addition to budgeting spoons, I also have to wait for my body to give me the “okay” to sleep. My wife will go to bed at a normal hour (she has summer insomnia as well, but since going on her blood pressure meds, she’s having an easier time sleeping than me), and I’ll sit up in the chair in our room, pull a blanket over my legs, pile up a pillow on my stomach, and watch Netflix or YouTube on my phone with headphones.

For hours.

Using a recent example – Lona went to bed at around 8pm after we got home from our recent trip to Chandler, AZ. I was physically exhausted but I already knew my summer insomnia had kicked in. The telltale sign is that my eyes won’t stay closed for more than ten seconds or so and I can’t shut my brain off.

A few hours earlier, I’d been tired. My eyes were closing on their own. But I still had things to do – we’d gotten back. I had to unpack, get my chargers back in the right places, fix the bed so we COULD go to bed…And I worked through my “ready to go to sleep” phase. The insomnia hit.

I sat in the chair, read on my phone and watched Netflix and YouTube. At 2am, I noticed that I’d dozed off and lost two minutes of my Netflix video. The ability to sleep was returning! I carefully uncovered myself, put my headphones away and my phone on it’s charger, got up, and slipped into bed. I could feel my body settling down and preparing to go back to sleep.

Lona asked me to turn the AC in our room up, as the room was getting a bit muggy. I had to roll over, sit up, and reach for the window – but that little extra bit of movement broke the sleep cycle. She thanked me as I settled back down, I wished her sweet dreams…and then proceeded to lie there and listen to the sound of the air conditioner for almost another hour before sleep claimed me again, finally.

When she was ready to get up in the morning, of course, I had only had a fraction of the sleep she had – but it was time to get up. So I get up and go on with my day because once I’m awake and have to get up to go to the bathroom, it’s basically over. That amount of activity makes me hit another awake cycle.

After three or four nights of this, I usually experience a crash that results in a normal night’s sleep before the cycle begins all over again. But even on a normal night’s sleep, I end up interrupted – this time by back pain.

I sleep best when lying down in bed. However, my back does not like being in a horizontal position (I have to sleep on my stomach or else I snore like an engine) for more than five hours at most. If I FORCE myself to stay sleeping in the bed longer than that, I have trouble standing up when I DO get up. I experience everything from shocks of pain up through my lower back, trembling in my hips, to the occasional semi-dramatic fall back into bed because my back actually DROPPED me.

The unfortunate solution is that I must get up and move from the bed to the chair at LEAST an hour before I plan to get up, to let my spine readjust to being vertical. With summer insomnia, this also means that halfway through my night, there’s a risk of me waking myself up. And most of the time, that’s exactly what happens. Moving to the chair is accompanied by an hour or two of Netflix, YouTube, or reading while I convince my body to go back to sleep.

Add in spoon theory to summer insomnia, and each couple of hours in which I can’t sleep and refuel for the next day cuts the number of spoons I’ll have access to when the time to get up comes around. After a night of fighting with summer insomnia, my usual ten to twelve spoons might be down to seven or six. Sometimes it’s all I can do to get to my desk for two or three hours and try so very hard to work on art or network to try and get commissions in before I desperately need to sit somewhere more comfortable, to rest, to try and figure out what I can and can’t do today.

Since going on the Mega-T green tea pills to help with my appetite, I’ve also noticed that I have to remind myself to eat – and that my “actual hunger” eating schedule seems to be once or twice a day at MOST. Sometimes it’s more, but that’s RARE. On the Arizona trip, I was basically forced to eat when Lona and her mother did – forced by the situation, not by them doing anything to actually force me to eat.

I was uncomfortable for most of the trip because I just…wasn’t hungry. At all. And eating food you don’t like when you aren’t hungry is very difficult. It turns the one spoon situation of dining into a two spoon situation, with the stress of having to figure out what to order and what you CAN eat at a strange place when you don’t feel hungry – it’s a mental spoon, not a physical spoon, but they deduct from the same pool.

I knew going into the trip that I was borrowing spoons. Eight hours in a car – in the back seat of a Honda Element, which really isn’t built to carry a 5’9”, 400lb guy in it – is stressful normally. But I was careful. I let things drop over the days leading up to the trip. I didn’t try to spend all my spoons every day. This didn’t necessarily translate to more spoons the day OF the trip, but it did translate to me being better equipped to handle the trip.

I did very well, the whole trip, but even with the horrible bout of insomnia the second night, I was aware as we were coming home that I’d overextended my spoon count.

I started writing this a few days before we left. It’s taken me this long to finish it. I just haven’t had the spoons leftover to write after all the other catching up I had to do once we were home again. So I spent a spoon here and there and wrote a bit. Eventually it got done.

But it doesn’t get the piles of old clothes in the corner of our bedroom to Goodwill. It doesn’t make sure the laundry is done and put away on the same day. It doesn’t keep my desk clean, the floors swept, or the bed made. Sometimes I don’t even have the spoon left to make an extra stop on my trip back to my desk from the bathroom to get myself water and end up with a dehydration headache because I just couldn’t stand that long and I’m too stubborn to ask for help.

I get exasperated looks. I get the opinion that I’m lazy, or that I just don’t care. I get people not understanding that I don’t do things not because I don’t want to – I don’t do things because I’m out of spoons. I don’t have one left for that today. So I have to wait – see when I’ll have the spoons for each of those things.

You can’t see chronic pain. You can see pain on a person’s face – but it seems to be the human assumption that unless you can see blood or a bone sticking out or a horrible bruise, any expression of horrible pain on a person’s face is either being faked to elicit guilt, garner sympathy, or to duck out of one’s responsibilities.

When I freeze as I stand up from a chair, bent forward with my hips trembling, I’m not trying to guilt the person that asked me to stand up and do something. When I bend over incredibly slowly as if I’m going to lose my balance at any moment, it’s because I actually AM. When I stand up after having cleaned up something on the floor and am panting and my heart is racing, I’m not trying to emphasize to anyone that I’m exerting myself. I’m just dealing with it. I’m dealing with the pain. I’m dealing with the dizziness. I’m dealing with my own anger at my body’s inability to do things that I KNOW are simple because EVERYONE ELSE does them without a problem.

When I finally have the spare spoons and do some sort of large cleaning project, I always run my wife out of the room. Not because I don’t love her company, and not because I necessarily LIKE cleaning alone…But because I can’t stand the perceived pity, or the perceived exasperation coming from someone other than me in response to the pathetic way I have to do things. And yes, I know – she isn’t actually exasperated, frustrated, or pitying me. But I’m so used to getting those reactions from society at large that I sense them even when they aren’t there. They’re a reflection of my own furious thoughts at my lack of spoons. I much prefer to do the things myself, recover, and then be able to show her the completed project with nothing but pride at what I accomplished.

It’s hard not to wonder sometimes if these limitations are all in your head. If you haven’t somehow caused yourself to believe you have problems you don’t have. A few years ago, I could spend twelve to fourteen hours walking around Disneyland with only minor lower back pain that I thought was weight related. Today I can’t even walk around a grocery store. Even looking at the x-ray evidence of what’s changed in my spine, I admit – I still feel like this sometimes.

When people get exasperated with me for not taking out the trash for long periods of time, or for letting something that fell off my desk stay where it’s fallen because the spoon it would take for me to pick it up should better be used making sure I actually eat that day, I wish I could explain to them that I’m not being lazy. I know, it’s incredibly hard for people without disabilities to understand those of us WITH them – but I think the Spoon Theory goes a long way toward making it easier to understand.

Unfortunately, the only way to one hundred percent understand what it’s like is to find yourself in the situation where you are now functioning on a limited number of spoons every day. I’ve watched this happen to my wife after her twelve TIAs took her from a “normal” person to what some people term a “spoonie.” I’ve watched her anger and frustration at realizing she can’t just DO things like she used to. I’ve also watched the recovery of her mother, a former “spoonie,” now functioning more like a “normal” person than she ever did before in her life and how THRILLED she is sometimes just to be able to do “normal” things like take out the trash without exhaustion.

I don’t wish what I suffer through on anyone. I do not wish ANYONE had a disability. I wish that spoon theory wasn’t the way life is for so many people including myself and my wife. But I don’t get that wish fulfilled. So instead, I offer a glimpse for the normal people into the lives of the disabled. Before you think that guy with the disabled placard but no visible disability is “just lazy” or the heavy woman is using the riding cart in the grocery store because she “eats too much and watches too much TV,” give them a second thought.

They could be using up one of their last spoons of the day being out of the house doing this “normal” thing, and in order to make sure it only costs ONE spoon and not four or five, they’re using the riding cart and parking in that spot. It’s not laziness. It’s not slobbery. It’s very possibly nothing more than pain or other physical ailments that they never asked for and can likely do next to nothing about.

Count your spoons. And be thankful if yours are unlimited.