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.

He was probably the biggest supporter of my blogging and photography and other hobbies. It’s not that I wrote for him, or took photos for him, but with him gone, there also goes one of the few people who really cared about what I did. Sometimes to the level of emailing me a photoshopped version of my photo because it was too dark (rather than, you know, just telling me it was dark so I could edit it when I got home from work). I miss being frequently annoyed at him. I have so much free time now.

Dealing with grief has been really strange, since this was the first big one for me, though I have had good friends die too. I’ve been observing myself go through it as I go through it, wondering why I can’t get over things in a linear fashion even though I’m well aware that’s not how it works. I saw a therapist, months ago, who told me to stop being so hard on myself. Since my mother, stepmother and a number of others were telling me the same thing, I didn’t see the point in paying to hear it again. I should instead find someone who will say “yeah, go beat yourself up about this, you’ll feel better after; will that be Visa or Mastercard?”

Holidays are hard. Anniversaries are hard; every time the 24th rolls around I think, “it’s been x months since Dad died”. Father’s Day fucking sucked. I wanted to scream at all the commercials, though it was so soon after. There is some comfort in the fact that Dad was never that into Christmas, so I won’t miss him in particular then, any more than usual. That’s the hope, anyways. I almost always spent Christmas with Mom, though last year I tried to make Murphy’s Law work in my favour by being at his place (so that it wouldn’t be the last Christmas with him and I would have spent it with him for nothing, as it were; I don’t know, it made sense to me a year ago). I’m hoping for a good Christmas this year. I think I deserve it.

My stepmom gave me his slides and negatives from his life-before-her, so I was scanning things and putting them up on Flickr, though I need to get back to it and be more methodical. Dad never really talked about his childhood (other than to comment how he was learning Latin when he was my age, what are schools teaching kids now, it’s all gone downhill, etc.) so it’s been interesting to finally see pictures from it. I think it’s good I have a project, though it is hard in its way too. I’m looking at pictures I’ve never seen before, of a time he rarely mentioned, and I’m realizing how little I knew him, really.

I created a tumblr of pictures he took of my mom frowning, because I thought it was odd to keep seeing these single photos of her standing by herself, in front of something, and not smiling. It makes me wonder how their marriage lasted 10 years. But unfortunately at least half of his slides are of bloody plants. All the rhododendrons you’d ever want to see plus ten times more. Bit silly since I’m sure you can find identical ones now, while I will never be this cute again.

So that’s the sort of thing I’ve been up to, when I’m by myself and have some time. I don’t think I’ve been overly sad or having trouble coping; it’s just that when I ruminate, it’s often about him. After a while, grief is what happens when you’re not busy.

If you are a friend of the bereaved

I heard from several people that they “didn’t know what to say” to me when my dad died. Maybe you will disagree, but I think the worst thing you can do is say nothing. Well, unless you’re a real asshole and come up with something horrible about the deceased, but at least you’re paying attention. I had some friends disappear when I told them my dad had cancer last year. Haven’t heard from them since. I guess they assumed I wasn’t going to be any fun anymore and they moved on. They can go fuck themselves, frankly.

But my heart was warmed by the care that everyone else showed me. Just a note on Facebook, a text message, a phone call, a card; it doesn’t take much effort, really. I got some really nice messages from the spouses of friends of mine, who I didn’t really know that well. That was unexpected and special.

So, don’t disappear, tell the person you’re sorry for their loss, that you’re thinking of them, whatever is sincere. Believe me, it will help.

If you want to do more than that, bring them food. Flowers are good too, though less edible. Offer to help in some way. Just be there for them. You don’t need to know what to say or do; just be a friend.

I suppose there was one annoying thing that was said to me by well-intentioned guy friends when I informed them of Dad’s cancer: “Take this opportunity to spend as much time with your father as you can, and cherish these last months together” or some such nonsense. No, really? I have to wonder what they thought I was going to do. But seriously, that’s the worst I got, and they did mean well.

If you are a friend of the deceased

Regarding the period of time when the dying is still alive, but on their deathbed: if invited, come and say your goodbyes, and then leave. Don’t come back the next day to say goodbye again unless for some weird reason you’re invited. This is such an intimate and overwhelming time for the family, and your showing up multiple times is disrespectful to them. I think I tweeted something about it not being a buffet, back in March.

If you are there in the hospital room, and the family asks you to leave, and the person in the bed can no longer express an opinion on the matter, leave. Your grief, though extreme, is not the same as theirs, and suggesting that your loss is on equal terms with theirs is selfish, even if you think it is.

After the death, don’t tell the family in detail how much you’re suffering while not asking them how they are doing; you’ll sound like an ass. Your pain is not their burden, and they are trying hard enough to keep themselves afloat. And yes, this means that you should remember them and their feelings in what you do in the following days. Don’t make yourself feel better at their expense.

If you are the bereaved

Don’t let anyone tell you how you’re supposed to grieve. I was told, the week of, that I was doing it wrong, that if I was grieving properly I’d be crying with wild abandon instead of suffering stomach cramps and insomnia. Well, the stomach cramps disappeared a half hour after the memorial, and the crying finally came last week, nearly two months later. Everything short of throwing a burlap sack of puppies off the overpass of a highway is probably an okay way to deal with loss. And who would do that to puppies?

I did really, really, really appreciate that I was able to take a week off work to be with Dad at the hospital, and the week after that to do some minor preparations for the memorial (in truth, I didn’t do much, but I wrote an obituary and biography for the booklet) and mostly zone out. Given previous jobs where I was denied vacation and always had to carry around a blackberry, I don’t think I would’ve been able to drop work like that had I not been where I am now. My coworkers were awesome, taking over my work to the point that I had no backlog when I came back. They deserve many hugs.

I did also get to visit my mom over the weekend, which helped so much too. My comment in the last post about my being most like my dad is quite apparent when I see Mom, because we aren’t much alike at all. Our voices are similar, but in looks and persona we differ to the point that people have shown surprise at hearing I’m her daughter. Though I think I have her ankles.

Due to my stepmother’s generosity I now own Dad’s car, and have paid off the remainder of my student loans. These sorts of things normally deserve a celebration but I would rather have Dad and debt and no car, to be honest. It feels as wrong to be happy about them as it does not to. But I named the car “The Pillock” because Heather and Kimli named their cars so I figured I’d have to, plus I grew up listening to Dad yelling at all the “bloody pillocks” on the road (I think I was a teenager before I learned that the word didn’t mean “bad driver”). And I guess this will mean less time spent with smelly, drunk and insane people on the Skytrain (I always picked the best times to travel).

But as I said, there is shit to do. My work won’t do itself (I’ve tested this in the past by ignoring it; nope), my cat won’t feed herself (though she stole my muffin this morning) and the condo won’t pay its mortgage. Life is dragging me forward, and I’m trying my best to let it.

Well, no, that’s not the reason, and I wasn’t offended, since I don’t remember it. The reason instead is everything that led up to Dad’s memorial service: the cancer diagnosis, Dad’s illness, and his request that I not tell anyone (which I took to mean, not blog about it; so I didn’t). Since sometime last summer I realized that I could hardly think of anything else, and attempts at blog posts would become streams of consciousness that would naturally head in the direction of Dad and my despair. So I posted little, except in the subject of my own health problems which were a nice selfish break from everything.

My father died on Friday, March 23, at age 68, of lung cancer. He was diagnosed with it, stage 4 even, in August or September, I don’t remember anymore. We knew sometime in the summer that things were really bad but it took doctors months to figure out the problem. I fretted for weeks before we got the definite news; friends and family told me to stop worrying, what’s the point of worrying when you have no control over the outcome, think positive, blah blah blah. And in the end it was worse than even I imagined, but “I told you so” or my preference of “fuck you” weren’t all that gratifying given what truth I’d won. The oncologist gave Dad a year and a half (with treatment) and instead he got a third of that (with treatment).

I feel I need to point out that he didn’t smoke, since the assumption with lung cancer is that it’s partially the person’s fault. Cancer doesn’t even run in the family, either. Dad just had to be a trailblazer.

Grief is a horrible thing. On Friday the 23rd I felt elation and relief that his suffering was over, and thought maybe I’d be fine from then on. That was quite stupid of me. Either I wake up feeling okay, but then the realization hits me; or I’m having a dream about Dad, where I know he’s gone, and when I wake up he’s still gone. I might see something funny and think, I should show this to Dad, and then I remember I can’t. I spend my days having the wind knocked out of me at random intervals.

I know I’ll get better eventually. But at this moment, the person I was most like in the world, and who loved me more than most, is gone, and I feel so very alone.

Today I discovered that there’s a connection between hypothyroidism and left-handedness. Between that and the fact I’m likely to die younger than non-southpaws, I really don’t see the point in being a lefty. It only seems to help your chances if you want to become the US president, but I really don’t, what with my being Canadian. But note this whole paragraph is an aside because being a lefty is not a symptom of hypothyroidism but an odd correlation that’s creeping me out.

Does my preference for cats mean I have a brain parasite? Most likely.

You can find lists of hypothyroid symptoms online. What possibly tipped me off that something was really wrong was that my hair was falling out. I have a lot of follicles, so it really didn’t make a difference, but it was bad enough that I cut half my hair length off just so it wouldn’t clog my shower drain and vacuum as much.

Another thing was the sense that I was suffering from Seasonal Affective Disorder in the summertime. Which, granted, was achievable last summer in Vancouver, which only technically could be called a summer because of the date. But I was feeling generally tired and sad and wanted to sleep lots, despite the fact that it was summer (sort of) and I’d bought my dream condo downtown above a Tim Hortons and surely this meant my life was complete.

I also had a bit of weight gain but I think that could be attributed partly to living above a Tim Hortons and also to other meds my doc had me on. Once I went off them the weight came off, but I went off those and went on synthroid at the same time so it’s hard to say for sure.

That’s most of it. There was also some muscle weakness which went along with being tired. And the fact that I could get a full night’s sleep but when waking up in the morning I’d feel like ass and want to sleep in indefinitely. And that I can feel unnecessarily cold, though that wasn’t as noticeable in the unnecessarily mild summer months.

Of course, none of this couldn’t be written off as symptoms of stress, or getting older, or of being a lazy git. Which is probably why my doctor seemed to be humouring me when she let me take the blood test. But I was right, ha ha, I am hypothyroid, I’ve won.

It’s only since starting the synthroid treatment, and feeling much better for a while and then feeling worse again, that I’ve realized that I’ve probably been hypothyroid for longer than half a year, and it probably is Hashimoto’s, because I recognize the swing of a particular symptom coming and going: brain fog.

I hate you, brain fog. You are the shittiest symptom for someone in tech support. When I was a DBA I could usually kick a database until it started working properly without anyone noticing that I was guessing. But as a tech support engineer I have to understand another DBA’s database problems from only their answers, files and output and explain to them how to fix it all. And some of them want to know why the problem happened, or why they should do as I’ve suggested (“because I said so” hasn’t worked so far). And this sort of work requires a clear head, which I haven’t always had.

The last few weeks were the worst, though I also had a bad cold and then a bit of stomach flu for good measure. It would be past 2 pm and I thought it was 11, and wondered where the hours had gone and not because I’d been busy working. I would discover a customer issue I’d started answering 30 minutes before but had completely forgotten about in the meantime. And I would get confused about stuff I normally knew how to answer, sometimes needing to pass the work to a coworker with a functional mind. For someone like me, where work is so much of my life (there’s that and the cat, basically), it’s been horribly frustrating to be so dumb and confused yet at the same time entirely sober.

I’m starting to feel better since the weekend, so I guess the higher synthroid dosage is working. I worry that this yo-yoing of mental competency is going to continue for much longer until the right drugs and dosage are determined. It’s bad enough what it does to me, but if I’m not working at my best, my coworkers have to pick up the slack, and that’s hardly fair as they’re all in other countries and I can’t buy them beer in thanks. And they already think so poorly of Canadians, since their best example is a slow-witted chick who likes cats, donuts and hockey.

The reason I’m middle aged is the whole hypothyroidism thing. When I’d web-diagnosed myself in November the blood test showed I was only kinda sorta hypothyroid (TSH level of 5.9, where “normal” was somewhere under 5 or 5.5). My doctor even said we could forgo the synthroid drug since it was only slightly off, but I had been feeling somewhat shitty since the spring and wanted to try it out. I did end up with an abundance of energy for a while, my apartment got cleaned and I finally had a housewarming party and was more productive at work. Then that kind of waned but you can’t be on speed forever.

So I wasn’t completely surprised but still pissed off that my 6 week checkup had my TSH level now at a 9, which is the wrong way it’s supposed to go (TSH = thyroid stimulating hormone produced by the pituitary gland, higher values means it’s trying harder to get the thyroid to work, and taking synthroid should make TSH levels drop). The treatment is a higher dosage of synthroid, but my doctor now thinks I have Hashimoto’s Thyroiditis which is an autoimmune disease where your body is attacking the thyroid.

Everything I’ve read on the internet says that Hashimoto’s and hypothyroidism are most common in middle aged women. So there it is. Next stop, menopause!

I get another blood test in 6 weeks that should indicate the Hashimoto’s or not, though it doesn’t really matter, treatment is the same. But besides the sadness over the loss of my few remaining shreds of youth, I am also upset to have acquired an actual disease. I’ve had plenty of injuries and I’m far from sane, yet I had avoided “disease” up until now and I thought I still had some time to limp about in the pastures of moderately good health.

Having older parents (I mean, older than average) means that in recent years I’ve watched them get diseases like they’re buy 4, get the 5th one free. Diabetes, parkinsons, rheumatoid arthritis, several kinds of cancer, collect the whole set (note I’m including stepparents here). I have absolutely no desire to get past 60 as they make it look like retirement is just what you’re doing when you’re not at the doctor’s. And here I am, starting early.

7 years ago (holy shit) I had blogged about an interactive Christmas stocking Mom had made. I brought it out yesterday and put it up on my wall, and as you can see from this video the digital music box still works:

I believe this is what Christmas in hell sounds like. I played it for Mom over the phone and she was like, “what is that whining in the background?”

Speaking of Christmas, I’m going to be flying up to Kelowna that day to visit Mumsy. It turns out it’s pretty cheap to fly on Christmas Day itself, and all-in-all my flight is about half the price it was last year. Spending *all* of Christmas Day with Mom seems pointless as I’ve been a bad girl and Santa’s not going to be giving me much. Or the other explanation could be that the Maui vacation I didn’t pay for in October was my Christmas present.

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So I’ve been on a bit of a health kick lately, to the point of even buying kale today despite having no idea what one does with kale but it’s green and leafy so I get a gold star for participation. I’m seeing a personal trainer and a physiotherapist, who both have told me my body is completely fucked up so go do all these ridiculous looking exercises on your own time. I’ve been doing them in the gym downstairs because if I’m going to look like a moron in public, I might as well limit my exposure by keeping it to the gay Fitness World where nobody notices me anyways.

They tell me I have malfunctioning buttocks. This sounds like a personal failure on the level of failing Grade 1, and requiring the same lack of effort. So most of these exercises involve squeezing my ass even though I don’t really need to in order to do a rep of whatever it is.

I’m also getting intramuscular stimulation from my physio, which has her sticking acupuncture needles in me and then poking around with them for maximum torture before pulling them out. The point is to break down chronic scar tissue, or it’s just an outlet for her sadistic tendencies. Either/or. It’s not too bad, actually, but people had me so nervous about it on Facebook that I took a valium before my first session and then she couldn’t do any points near my armpit because I kept giggling from the tickles. It was better this week, I behaved myself. I’m not sure if it’s doing any good yet, but I haven’t had any muscle spasms in my shoulder since she started, which is a good sign. Yeah, I have several parts wrong with me.

December seems like a bad month to be attempting healthy lifestyle changes. Tim Hortons just brought out their candy cane donuts this week, and working from home means I’m only ever 3 floors away from one of those things. Perhaps I should just give up and start over in January.

I went to Maui last month. It was good and I want to live there and eat pineapples and ahi poke all day and snorkel with turtles and never wear a sweater again. I came back after two weeks and took a whole week to stop feeling cold in the wet October weather of Vancouver.

That was my first vacation in 5 years. It turns out, surprisingly, that vacations are incredibly relaxing and a good way to mentally recharge your brain, because I found myself being much more efficient (though perhaps just as clueless) at my job after the trip, despite the extreme chill. The thing is, I didn’t actually know that vacations were good for that, since I had so rarely been allowed to take one by various former employers. I now recognize that I’ve really been deprived, though I should also blame myself for not standing up for my rights and/or threatening them with DROP DATABASE.

I have yet to go through my vacation photos, as things have been busy since I got back. I do have my snorkelling photos up (via one of those cheap disposable cameras you can use underwater), including this hentai-esque shot of an octopus on my thigh:

The lamest part of my trip was probably the sunrise at the Haleakala volcano, because it was full of tourists who were taking pictures of the sunrise WITH FLASH. Seriously, wtf people, learn to use your cameras already. Did they think they were going to make the sun come out faster by tempting it with light pellets?

In more recent news, I web-diagnosed myself with hypothyroidism and I turned out to be right. I find that hilarious, given I’ve web-diagnosed myself with pretty much everything but testicular cancer at one point or another. Plus people I’d spoken to about my recent weight gain (7 lbs or so in the last half year) were hinting that I was getting older and my metabolism was slowing down and I should just give up and start wearing mom jeans. I’d go up to them and say “nya nya” but I am too old for that sort of thing. Note it’s my 34th birthday in 29 days.

It snowed tonight. Does this mean I can start listening to Christmas music now?