Why the “Spoon Theory” just doesn’t work for me

I used to think the Spoon Theory was a great way to explain to healthy friends, family, and co-workers what it was like living with a chronic illness, chronic pain and/or chronic fatigue. However lately I feel less and less like this theory makes sense to me. I can understand the theory and get why some people would associate with it as a way to explain what day to day life is like for them and how chronic illness, chronic pain and/or chronic fatigue affects them. For me though, I find it is just making less and less sense as time goes by and as I really think about it, it just doesn’t seem to work for me.

Why? Well, first off though I get that by setting the 12 spoons a day is just a way to measure on average how many spoons you will get each day. Setting an average just doesn’t make sense to me, my life has taken a turn that seems anything but average to me. Every step and every day is an unknown for me most of the time. Not always bad, but just unpredictable to say the least. Setting a definitive number of “spoons” per day just doesn’t work on so many levels. For one, I never start the day with a specific number of spoons. Some days I could wake up with 20, other days I could wake up with 2.

I know this is kind of explained in the theory as that overdoing it one day uses too many spoons and therefore you wake up the next morning with fewer spoons. As well as sleeping poorly can take aways spoons, missing medication, or skipping a meal, etc. One would look at that and say it does make sense, but here’s why it doesn’t. I have had sleepless nights where I wake up the next day and function at a higher level then nights I get a decent sleep or vice versa. I will give them the missing medication one, that’s pretty predictable for me, missing medication usually equates to a “spoon” or two missing. I guess in theory the same could be said about getting a cold.

However, as far as every day, day-to-day activities go. I never know how many spoons they will take from me or even give to me. Taking a shower for example. One day taking a shower is a big task that will eat up pretty much all my “spoons” no matter how many I am given. Other days in contrast taking a shower will pep me up and give me more energy, much like a “healthy” person. So tasks that should be low on the list of spoons take away more than tasks that should be higher, or again vice versa.

Having a day where I use up more then my “allotted spoons” doesn’t necessarily mean that I will have fewer spoons the next day either. For that reason, I find the Spoon Theory so hard to connect with and rationalize on a personal level. Some times I will have weeks or months on end that I feel great, other times I have weeks or months that are horrible every single day. Sometimes oddly enough having a cold or recovering from an illness will actually give me more energy for a while, not less.

Often I may wake up with a certain amount of spoons and for some reason for no apparent reason at all my body has just sprung a leak and all the spoons just keep disappearing without doing anything in particular and sometimes in the middle of a random day where I feel like I am on my last spoon suddenly it’s like someone with extra spoons to spare has decided to gift me a few. It is so unpredictable that it just seems to me like another label and one that just doesn’t quite fit all that well for me.

Because it is so unpredictable having a chronic illness, chronic pain and/or chronic fatigue, I find that trying to justify or rationalize it in such a way just seems almost more damaging to me, especially when it comes to trying to help others to understand the chronic illness, chronic pain and/or chronic fatigue, it sets an expectation of predictability where there just isn’t any.

While I am at it I want to take the opportunity to introduce you as well to a little side project I decided to start a while back and have been sitting on for a while well trying to figure out what I want to do with it. I decided I would like to start a stay-at-home blog about being basically for lack of a better term “housewife” where I can share things like recipes, work from home opportunities, crafts, some DIY, and more on mental health and chronic illness from a stay at home perspective beyond this blog. Something I could monetize and maybe even turn into a community with other bloggers, guest posts, etc. My hubby helped me come up with the name. Despite it having the word Canadian in it, it’s not just for Canadians, its for anyone who wants to read, join or be a part of it.

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Taking control back

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Some days I really feel like a miserable failure at controlling my diabetes! Being sick the last few weeks with a bad infection and having to go on antibiotics, steroids and anti-inflammatories have really taken a toll on my blood sugar. Before all this, I was starting to get some control back. I was doing good enough that I was down to 10 units of long-acting insulin at night after starting Glumetza. I was told at that point that if I could get down to 10 units and maintain an A1C within range of 5.6 to 6 then I could come off the insulin altogether and I did it!

Now though my Freestyle Libre is now estimating my AIC to be in the 7.9 range and climbing. It’s amazing how one infection over a 2 week period can throw everything off so much. I have to admit that even before getting sick I was starting to slip. I had switched from using my Libre reader to the new android app using my phone and NFC as it uploads directly to Libreview cutting out some extra steps. At some point, I stopped bothering to scan and was only doing it once a day instead of at least every 8 hours as needed to capture 100% of the data and get all the proper charts and everything else. On top of that, I was missing doses of Glumetza as I would just forget to take it. So really this started before getting sick but getting sick has just made it get out of hand.

I know I need to get that control back. I just don’t have a clue how. I have been careful the last few days to ensure I am taking my Glumetza each day since I am also on a ton of other meds (5 other prescriptions at the moment, 9 in total over the last two weeks). I am really struggling though. It’s as simple as scanning my sensor to capture the data. I don’t know why that’s so hard to remember. I am not using my glucometer at all either. I haven’t pricked my fingers at all in weeks to even see if the Libre is working correctly beyond one finger prick when inserting a new sensor.

So overall my control has become very poor again and to make matters worse today I find out my new drug plan does not cover Glumetza at all in either its brand name or generic forms and so I am now going to have to either go back on insulin, or switch back to Metformin, which was causing major stomach issues, or be switched to something else altogether. I guess it means going back to the table and re-looking at everything. I can not afford $114 every three months for it. So something will have to give. Maybe going back in insulin is the best thing? I mean at least it would allow me more control, right?

I know I can’t beat myself up too much about the actual numbers right now as first Prednisone and then Dexamethasone has really raised them through no fault of my own, not to mention the other meds. But I really need to be scanning my sensor at least every 8 hours or even better, before and an hour or two after meals and double-checking a bit more often with test strips. I can’t even remember the last time I bought any test strips. I have been on the same pack for almost a year. I have a ton of needles, lancets, test strips all just lying around not being used. I got a little too comfy with the Libre and not looking beyond the AIC to the actual numbers.

I don’t even want to talk about meals… right no I am on a soft food diet and have been for 2 weeks and will be another 1-2 weeks most likely. So I am really struggling cause it is all carbs, starches and sugary stuff. Even though I know it doesn’t have to be I just don’t have the energy to cook and have been so sick that I am unable to stand for any periods of time and so I am eating ready-made sugary things which is not helping at all. I can’t even stand up long enough to do a couple of dishes so cooking is out of the question.

Once all this stuff is over with my tooth, jaw, and face I am really really going to need to take back some control and once I am feeling better start figuring out some meal prep once I am back to work. All stuff I needed to do anyways since I royally suck at it. I suppose I should give myself a break and chalk this all up getting so out of hand to being ill but I kind of feel like a failure anyways and it’s bugging me so much and making me really frustrated and mad.

Kandahar, Afghanistan

In March of 2009, I hopped on a plane in Ottawa and flew to Dubai, United Arab Emirates, and then on to Kandahar, Afghanistan. My mission? To work on the base in Kandahar for 6 months as civilian support. I was 29 years old and this was the furthest from home I had ever been. I only had one week’s preparation before being shipped off with about 15 other men and women I did not know to a place I had never been to a climate I was not prepared for and a situation that kind of got out of hand.

To my credit, I did do my research and my father who is ex-military had been to Qatar almost 20 years before. He was familiar with what the housing, food, and “community” living was going to be like. He knew the climate, what I would need to bring with me to wear, what other things I would need with me. So I felt like I was all set.

The plane ride to Dubai was very typical if not a little turbulent. As someone used to being on planes and in the air there were no surprises, just an excitement about what was to come. I couldn’t wait to get there. And I was missing my family and (current) boyfriend already.

In the airport in Dubai we shuffled into a few cabs and hightailed it to the most magnificent hotel I had ever stepped foot in. The hallways and foyer floors were all marble, there was real gold accents everywhere, beautiful crystal chandeliers and accents with water colored by emerald color lights. Outside the hotel, the sidewalks were also marble! I was so amazed.

The inside of the hotel room was just as luxurious. My room had 2 king-size beds. A Jacuzzi tub, a beautiful marble shower with gold accents. White silk bedding with luxurious cotton and silk sheets. And bath towels so big I could wrap myself 3 times in them. This was the “calm before the storm”. We later found out the company paid more than $600 per night per person.

Back at the airport the next morning and after green Mcdonald’s Chicken Nuggets, we loaded onto a plane that looked like it was out of a bad movie scene. The paint was peeling. You could see where at least 2 other airline logos had been on it and the wings had dings and dents.

Inside was not much better. About 15-20 rows from front to back. 2 seats on each side so I’d guess maybe 60-80 seats if that. The carpet was torn and stained and I swear when you looked down at where the seats were bolted to the floor you could see outside (no joke!). I sat down beside a guy that looked like he was out of an Indiana Jones movie and buckled up.

Shortly after I sat down and while they were still loading a plan a girl (woman) walked on the plane. She was about 19 or 20 if I had to guess. She was dressed in black shiny leggings, a pretty sequined top, and 6-7 inch heels, a shiny leather looking surely designer carry on the bag. Indiana Jones looks at me and says “I hope to god she’s getting on the wrong plane” and goes back to his book.

We take off and the inside of the plane shakes so much I swear I see bolts coming loose. Indiana Jones smiles at me and says “hold on!”. Oh, believe me… I am.

It’s an hour-long flight and I am listening to music on my little iPod nano mini and about 40-45 minutes into it I hear a loud whistling sound through the music. I look to my left out the window. I was in the outside seat on the right side of the plane if you’re heading down the aisle from the front. Indian Jones says “that’s a rocket (missile), they are trying to hit the plane, don’t worry we are too high up. It’s the landing you need to be worried about”. I put my music back in my ears. 10 more minutes (which seemed like hours), Indian Jones touches my hand to get my attention.

He says “Buckle up Hun, put all your gadgets away, tuck your bag under the seat and hold on”. I shuffle to do this and hold onto the seats with white knuckles. My dad told me about the types of landings the planes need to do in order to avoid the missiles and stuff. Nothing prepares you though. We make a spiraling descent out of the movies and land with a thud and squeal on the tarmac. I grab my stuff and get ready to go. I get as far as the door of the plane and on the boarding ramp (stairs) and halfway down when the sirens go off. Indiana Jones who is still with me grabs my arm and steers me under the body of the plane and as far from the wings as possible as the first missile hits a ways away. The ground shakes. And so am I.

We walk double-file across the tarmac after the all-clear siren goes (you learn the difference between the two sirens as well as any others pretty quickly) and head for a little gated area off the side of the building where we wait for about 40-45 minutes while they slowly trickle us through. Finally, I am through the gates. Welcome to Afghanistan! I am finally here.

After getting through the gates, we went on a bumpy and slightly smelly bus ride across the base to pick up our PPE (Personal Protective Equipment), which consists of a duffle bag filled with a protective vest (Kevlar possibly, I don’t remember) and helmet, a gas mask and a flashlight. This was to be stored under our beds and donned if you are close enough to it when the sirens go off, which happened again while picking up our PPE and trying it on. After 2 minutes face down on the ground with my arms over my head. I head to a concrete bunker and hang out till the all-clear siren.

Next, we go get our IDs and travel around the outskirts of the base, safely just inside the walls to get a view of everything, including the “Shit pond”, which is a small lake that was filled with human waste, cooking oil and grease. The smell gets whipped around the base with the desert winds. It can get quite ripe. But like anything you get used to it. Till you get home to Canada (or where ever) anyways and can not get the smell out of your hair, skin, clothing, and baggage, no matter how much you scrub, wash and rinse. Eventually, it fades on skin and hair, for most, in time to go back to KAF after vacation.

Luckily it’s close enough to our tent line that you get used it fast. As well as the sounds of jets, planes and other vehicles, night and day which we were also lucky enough to be right beside. Oh and the constant blasting and testing of missiles and other ammo at the ammunition depot and fields. You really do get used to it though. Makes for a rough first week, coupled with homesickness.

“Home” is an 8ft by 6ft space in an 8 person tent that you share with up to 7 other people of the same sex. Mine was quite cozy with a real dresser, a single bed, a locked storage box, a night table, and one of those 3 tier plastic containers you can store stuff in. I learned quickly to put shoes in there and not leave them on the floor or all kinds of creepy-crawly would crawl out when you picked them up.

Prior to the plane trip to KAF, I had a week’s stay outside Ottawa on an old base or training range. Where we learned CPR and First Aid, fire fighting skills, training on how to recognize land mines, booby traps and any number of natural hazards, including but not limited to: Snakes, scorpions, and spiders. We learned to don our gas masks in the dark inside a hut filled with pepper spray gas. I was one of the lucky ones that had been shown how to use it before, minus the pepper spay, when I was on base in Baden-Söellingen, Germany. We also got medicals, immunizations, etc. They weren’t really worried about us getting to know each other. There was plenty of time for that in KAF.

Lunch and supper were usually spent at one of the 4 Dfac’s (no idea what that stands for), which were basically cafeterias, each with slightly different themes. Aptly named: Niagara, Cambridge, Luxemburg, and Far East. They basically served the same items with different spices, garnishes, etc to make them more, North American, British, European, and Asian foods. There was also a “fancy” restaurant whose name I have forgotten and a European bakery that served the best black pepper beef pot pies, which was below a European PX (“post exchange” – a fancy way of saying store). At the time I was there, along the boardwalk there was a Tim Hortons, a Subway, a Pizza hut, an ice cream stand, and some other concessions. Pizza hut quickly became a favorite. Along with Tim’s. Can’t be a proper Canadian without a Tim’s close by.

The next weeks blended together with learning my work, getting acquainted with the lifestyle and people of KAF, and missing home, but enjoying myself for the most part. Life at KAF was interesting and the money was good. I bought a cell phone and got internet. They along with food from the boardwalk or things bought in one of the PX’s or souvenirs from the market or boardwalk were the only things you paid for. Everything else was included, plus a hefty pay. Bottled water was everywhere you looked at the end of every tent row, outside every building, around every corner. Tap water was not potable at KAF and could give you very nasty bugs, parasites, etc.

In the evenings we would sit outside on our decks made of pallets and plywood in camp chairs around wooden cable drums that served as tables and played cards, talked and played board games or we would go to the gym or grab a late supper at one of the Dfac’s or spent half the evening in a concrete shelter in the dark with maybe 20-30 other people or more trying to get as close to the concrete bunker as possible should a stray rocket get too close for comfort. Though most were duds and half the time they could not hit something no matter how hard they tried.

Once or twice a month there would be a barbecue hosted by the company and we would get 2 beer and have hamburgers, steak, ribs, and/or hot dogs. Real stuff sent from the US or Canada. Other than that drinking and drugs of any kind were strictly forbidden. So  was fornication of any kind. The “No booze, no sex” rule that also applied to both the Canadian and American troops stationed there. Other nations were not as strict with the no sex rule but the no booze rule was enforced by the base commander and anyone civilians caught doing either were sent home. Not sure what happened to the troops.

On one such occasion (barbecue, not sex), after drinking our beer a guy friend and I decided to go looking for another friend of mine and found her on her deck in front of her tent with another tent mate and a tent mate of my guy friend. We sat down and started talking. About an hour or two later when the barbecue was starting to wind down and people were starting to migrate back to their decks in front of their tents, I felt something crawling on my face. I swatted at it and it bit me. Being used to black flies and other things biting me I only mildly paid attention. My friend looked over and said, “hold still, you have a spider on you, I can’t see what it is”. It fell on my leg and bit me again, fell, and scurried off.

My friend tried to kill it but couldn’t it moved too quickly. He thought it was a brown recluse though and told me I needed to get to Role 3 (the Nato Role 3 hospital) fast. I was starting to feel sick to my stomach (from the spider bite or from nerves? I don’t know) and feeling lightheaded. They got a vehicle and in the middle of another rocket attack took me to the hospital. Once I got there I was taken in, put on a saline IV, and asked a bunch of questions about what bit me. I couldn’t answer. Someone else said spider but we did not know the kind. I had seen it briefly and they started showing me pictures to try and identify, I passed out.

When I woke up they told me they had given me the stuff to stop the spread of the poison. They said even if it was not the spider I thought it was there were plenty other poisonous spiders and other things that could have bitten me and since I was not able to kill it and bring it with me they would need to keep an eye on me. I was put on a hospital bed in a ward of about 10 beds. There were other people there including a child I believe. I don’t remember much about the next 2-3 days. After more than 24 hours I was sent back to my tent and told to rest. I slept a lot or just laid on my bed.

After another day or two, I was able to get up for 12-20 minutes at a time and a few days later I decided to go back to work, the first day was a bit of a blur. The second day I was feeling better and decided to go to the boardwalk for my lunch and grab a pizza from Pizza Hut. I ordered and then went to lean against the rail at the other side and wait. A few minutes later I apparently fainted and fell. Unfortunately, there was a bench beside me that a few people were sitting on and I smashed my face into the cement post on the back of it.

I woke up when a worker from Pizza Hut poured cold water from a bottle over my head. Not sure how good an idea that was considering my face and shirt were covered in blood. When I saw the blood I passed out again. I am not one to faint at the sight of blood, even my own. But that was a lot of blood. My shirt was saturated in it. And my face stung like a bitch. I still wasn’t sure what was going on.

Three British girls came rushing to my side, all were medics in the British army. One told me I would need stitches, she lifted me up in her arms and carried me to their vehicle and drove me back to Role 3. The same doctor again: “Boy you must really want to go home”. No… I did not. The girls disappeared. I never got to say thanks. Not that I could, my whole mouth and face were numb. I didn’t hurt yet. He sat me in a wheelchair and disappeared and when it felt like I was going to pass out with pain which did not take long to start or loss of blood, or both he showed up again and said in a lovely accent I did not realize he had, said “It’s busy tonight” and disappeared again. After god knows how long he came back a 3rd time and pushed my wheelchair into an x-ray room.

An American girl about my age or maybe a few years younger took x-rays of my head and wheeled me back to the other area I was in. Then I was brought to the dental part of the hospital and more x-rays, this time dental type ones were taken. They confirmed I had a broken jaw and my front teeth were cracked, but not broken. I also had bitten off about 1/3 of my bottom lip. That concerned me the most. I was scared of scaring. There is some but now it is hardly noticeable. About 20 stitches later in my lip and inside my mouth, I was back in one piece. They said my jaw would heal on its own (it did not, I had to have it broken and wired about 6 months later).

I went back to my tent and slept most of the next 2-3 days in a haze of pain. My tent mates and other friends I had made, bought me soup and Gatorade and snuck soups and soft foods into the tent (not supposed to have food in the tents). Until I was well enough to .go to the Dfac again. I ate soft foods for the rest of the time I was there. After about 2 weeks I was told I either have to try and get back to work or they were sending me home. My job consisted of talking on the phone a lot. 2 hours into the first shift I gave up and tearfully told me, supervisor, I wanted to go home.

I went back to my tent and a flight to Dubai was arranged for 3 days from then. On the day I left it was a blistering 42°C. The warmest so far. I got back on the plane from hell and we lifted off. I arrived in Dubai roughly an hour later. I left with a friend of mine and a friend of his who was going on their vacation. They decided to go to Egypt. I landed in Halifax to 25°C and was freezing. I was home. :love: