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Finite spoons

Someone found my blog while googling “hentai weight gain”. I assume they were disappointed.

So, long time non-blogger, first time writing for 2013, mostly because the stream of consciousness being typed out always eventually ended up mentioning my father and I didn’t want to seem overly morose or, even worse, dull to people. It’s not like Dad and his death were all I talked about to friends. I still have friends. I can give you references.

It did occur to me over the weekend, though, that I should write about my experience having an autoimmune disease, in hopes that it might explain to some of these friends that I’m not using “I’m tired” as an excuse to get out of seeing them, but that I’m 3 am tired at 9:30. Also, from the questions I’m asked, people don’t know what it’s like, and I find myself justifying myself and my behaviour to people who ask, “well, isn’t there medication for that?” So, here I go, explaining.

I heard the term “spoonie” mentioned a few times on Twitter and Facebook, and it comes from a blog post called The Spoon Theory. The idea is that a person with a chronic condition has a finite amount of energy, a unit of energy being a spoon in this analogy. And each activity they need to do during their day takes up one or more spoons, so eventually they run out of spoons. They can use more spoons by borrowing from the next day, but then they have fewer spoons that day. A person who lives like this is a spoonie. Crowdthink comes up with weird names for things.

Now, my condition’s not horrible so I don’t want to make it seem like I’m suffering in pain and unable to walk and chew gum simultaneously. Hypothyroidism is treatable. However, my problem is that my thyroid hormone levels fluctuate a lot, meaning that sometimes I’m hyperthyroid (and anxious and sweaty), sometimes I’m okay, but most of the time I seem to be hypothyroid, requiring a dosage increase every few months. So most of the time I have finite spoons.

Being hyperthyroid isn’t the worst, especially in winter (who needs a coat?), except that the anxiety, when it happens, can be debilitating. I made myself sick worrying over a conference talk last year and had to cancel last minute because my heart wouldn’t stop racing (after three hours of tachycardia I took a sleeping pill in the middle of the day and admitted defeat). I’m not sure everyone really believed me that the anxiety was as extreme as that but I had to give up trying to explain it to people for my own sanity.

Being fine is GREAT. Being fine is so rare that when it happens I suddenly feel like I’m someone capable of Doing Things. I can think, I can solve problems, I’m on the ball at work. I can clean my apartment and buy groceries and cook. I can be generally more or less nice to people sometimes, and I hate people. I think, now I can do what I’ve been putting off! And then in two weeks I don’t feel as good anymore.

Being hypothyroid is the worst. My hair falls out (that’s fun), I have no energy, I have trouble getting up in the morning, I retain water, I feel depressed. Insomnia is a new one I’ve had since December. Lately I’m taking 20 minutes to pull myself out of bed because it feels like just opening my eyes is too much work. I almost wish I were hungover since at least that would suggest I had fun the night before.

I do my job from home (thankfully), and sometimes it’s hard to stay awake all day. Maybe at 4 or 5 pm I’ll call it quits and go nap because my eyes have been half-closed for the past hour anyways. I want to cook dinner for myself, but there’s nothing in the fridge, so I drag myself downstairs for some Nando’s or Tim Hortons or sushi, then come back and lie on the couch until it’s time for bed. In the meantime I’m perpetually berating myself for being lazy, and telling myself that I’d probably feel better if I ate more vegetables. It is so fun being me.

Friends invite me to hang out last minute, and I don’t have the energy because I’ve already worked a full day and did something else tiring and now I’m done. I can’t do last minute these days.

Honestly, all these symptoms would be more or less tolerable if it weren’t for my brain taking a long vacation outside of cell range. I’ve learned from speaking with my endocrinologist and forum users that I suffer the “brain fog” worse than most. I’ve said it’s because my job requires me to constantly analyze and problem solve and think, so if I can’t do that I can’t do my job. But I’d also like to believe it’s because I’m normally super-intelligent, of course that’s not true, I just work hard.

Here are a few examples of what happens on a work day when I’m hypothyroid:

1. I take a new tech support issue. Then time passes. Then I look at my list of support issues and see a new one there, and suddenly remember I’d taken an issue but hadn’t responded yet. Then more time passes. Then I see the support issue on my screen, still unanswered. Eventually I answer it. I don’t know what happens during the “time passes”, so I assume it’s a mix of Facebook and Satan.

2. I have a support issue where the customer is having a performance/crashing/error problem and has sent me logs and status output and configuration files to analyze. I open the files and get lost. I’ve seen these types of files hundreds of times before, but I can’t remember what to look for, or even what some of it means. I don’t remember how to do my job, so I ask a coworker to take the issue from me.

3. I make a mistake in writing instructions to a customer, and they respond with error messages saying something went wrong. I decide I can’t trust my own abilities anymore and ask a coworker to help the customer out so I don’t break anything else. The coworker then tells me how to do my job because they now assume I’m an idiot.

#1 happens a lot, including today. #2 and #3 are rarer, and more often I just have to ask a coworker questions rather than hand over all my work, but still, it hurts to be this dumb. I also find that I have limited mental resources for the day, so I can burn out from a regular day’s work. I’ve been asked why I don’t write a technical blog, or work on outside projects or contract work in my off hours. Yeah, this is why.

I’m supposed to get (mostly) better, when the thyroid dies off and I can stay at the same medication dosage, but for the moment I’ve learned not to count on anything. I’ve made plans but postponed more, because I can’t give 100% when I’m only 60%. I only have so many spoons.

2 Comments

  1. Chris T says:

    AI disease sucks. There are things you can try that may help you. I have had Graves disease (hyperthyroid) and now I have a hypothyroid. I also have ulcerative colitis which causes a great deal of brain fog.

    I have done a lot of research as I have been living with this disease for 7 years. I have very active AI disease in that my colitis is bad, I have roving joint pain, asthma, and weird rashes. I am even on immune suppressant drugs. A lot of what I have been reading is that they now think that 90% of our immune systems live in our gut and that if we do not have the right balance of gut flora we are sick.

    So, introducing probiotics will help immensely. But not probiotics from a pill. The thing I have found that works the best for me is Kefir – it is fermented milk. I started taking it in my morning smoothie last June. By mid-August, I was off daily narcotics for the pain from my colitis for the first time in 3 years. Sometime around then the fog lifted. It was so amazing I can’t even begin to explain it. All was fine until early December, I got a cold and I went off dairy and kefir. I progressively went downhill, pain, fog etc. Finally, I started it again in late January and last Thursday the fog lifted, I can think again! I would say I am about 80% healthwise. I still can’t do everything I want to do, but at least I can work and mostly live. I am back to sleeping 9 hours instead of 12.

    On the hyper thyroid front – have your docs offered you a beta blocker for those really bad times when it is hyper? Or ativan to help you deal with the anxiety?

  2. bc says:

    Hey Gillian,

    That sounds dreadful. Especially the mental stuff; I’m in IT as well, and my biggest paranoia is that I’m getting dumber/slower as I age, rather than smarter. I occasionally suffer from brain fog as well, but unfortunately I don’t have a medical condition that I can blame it on. Well, as far as I know. More paranoia. I hope.

    I wanted to post though, and tell you a technique I use at work (or even working on various projects at home) that has really helped me…which you may or may not already do, but you don’t mention it so here you go.

    Basically, I stole this idea from an old sysadmin I had years & years ago; what she would do is write down everything she did during the day in a notebook. When people came to her with problems, she could check her notebook for clues if she’d already worked on something similar, or find a path she wrote down to a document someone needed, or justify to the boss why some task took her 3 days to complete.

    I’ve long since abandoned the notebook for an online log; I keep a file open on one screen and jot things down as I do them, find them, figure them out, etc. I’ve got a whole system now, where I denote tasks with a ‘[]‘, then add a ‘[*]‘ when it’s done, or ‘[~]‘ if I made some headway but there’s more to do; each month gets a new file, each day starts w/ the date, etc.

    This log serves me in two important ways. First, I can grep through years and years worth of my work history and look up exactly what libraries I had to install to get this thing to compile, or that thing to run, etc. But second, and more importantly: it gives me focus. Keeps me from that whole ‘time passes’ thing, because when I find myself staring into space wondering what the hell I was working on, a quick glance at my log gets me right back on track.

    Anyway – simple technique, maybe old news to you, but if it helps – great. Obviously no use in getting you more spoons or anything, but perhaps it’ll help you get the most out of your daily allotment.

    Stay sane.

    bc

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