What Makes Me Disabled

Why the government gave me that capital-D designation. (And other stuff.)

Intro

Hello! Welcome to what I suppose could be called the first official entry in the TBQ Talks universe. Is that a thing we can call it? Sure, why not?

In this issue we shall cover:

• Schedule Updates

• Content Rules

• What Makes Me Disabled

• Other Noteworthy Stuff

• Thanks

Hopefully that all sounds good. Or at least not horrendous. I'm okay with low expectations here.

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Schedule Updates

Speaking of low expectations, much thanks to all of you for being patient as we figure things out around here. And by "we" I mostly mean "me" but you guys are included because your feedback does help.

As I mentioned in the intro letter, I'm trying to find a balance in terms of sending out content but not spamming people. What I've decided to do for now is to say that there will be no more than one email sent out per week. There could be more articles per week, but no more than one email. And by email I mean a newsletter like what you're reading at this very moment. Also for the sake of clarity from now on I'm going to be calling this a newsletter instead of "newsletter/blog/type thing" because 1) I'm trying to save on typing and 2) Substack calls them newsletters so may as well go with that flow when I'm picking something for consistency.

Anyway, the newsletter will, like this one, include content but will also include links to whatever got posted during the week. So that way if multiple things happen to make me go off on a rant you won't see my name filling up your inbox to the exclusion of everything else. I figure anybody who actually does want those up to the minute notifications from me is either already following me on Twitter or would perhaps like to start doing so.  To that end, I will post on Twitter whenever a new article of any kind goes live. But at the same time if all you want is the email updates you won't miss out being notified about everything that you haven't read yet because any relevant links will also be there.

Hopefully that makes sense? Let me know. Right now I'm mostly guessing what might be best for people so I'm all ears if I'm getting it wrong.

Also note: I'm choosing "no more than one" wording here very purposefully. Due to my disability (see below) I can't guarantee I can keep to a weekly schedule. That'll be something I figure out with time. So I can promise no more than one but I can't yet promise a minimum of one. We'll see how that goes.

I imagine things are going to be rather amorphous as we find out what works here, so I'll use this spot to keep you posted about any changes.

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Content Rules

One of the topics I will be discussing repeatedly here is health. Specifically my health, which includes both physical and mental illnesses. To that end I want to make it clear that I am speaking purely from my own experiences. I am not claiming to be an expert on anybody but myself. I am not offering medical advice nor am I asking for it.

Let me make that last one clearer: I AM NOT OFFERING MEDICAL ADVICE NOR AM I ASKING FOR IT.

The not offering is going to be pretty easy: I just won't do it. However the not asking is going to be harder because woo boy do people love to give it. To which I say it is not welcome here. I do not want it. I will not read it. If you give it, I will delete it. If you give it to somebody else in the comments of a post I will delete that too. There is no negotiating on this. Do not do it.

Also regarding content, I do know that topics related to health can be triggering so where appropriate I will put warnings before anything that touches on those topics. If I miss a warning please let me know. I can't edit emails once they've gone out but I can edit posts, so those are easy enough to fix. Thanks in advance for any help there.

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What Makes Me Disabled

Warning for discussion of depression, anxiety, panic attacks, self-injury, and thoughts of suicide.

I debated where to start the whole "content" part of this newsletter deal. History? News? Other? And I figured if you were being so kind as to strap in with me for however long this ride takes us I may as well start with something which is both about me and which is going to be a repeated topic of this newsletter, namely my disability.

Or disabilities. Or illnesses. Or … okay this is where the wording gets weird. So let me take a cue from my application for the US Government to consider me disabled (which it now, officially, does) and give you the overall lay of the landscape.

First we have the list of illnesses which were considered relevant to the discussion. Which are:

• Hashimoto's Thyroiditis

• Beta Thalassemia

• Migraines

• Major Depressive Disorder

• Generalized Anxiety Disorder

(Sidenote, what is with the picture on the Generalized Anxiety Disorder page??? No, just… no.)

Now to be clear there are other things wrong with me. For example my eyesight is horrible. But those things weren't relevant to the disability application so I'm leaving those out of the discussion for the time being.

Also to be clear, some of these are not as big an influence on my life than others. The Thalassemia, for instance, is on the Minor end of the scale (capital letter there because that's part of the name.) I don't need regular blood transfusions or anything like that. But I am anemic, complete with the symptoms of that. And the Thalassemia makes it so that I could eat an entire bar of pure iron and it wouldn't change a single thing because my body can't do anything with it.

(Let us now pause to imagine how painful it would be to go to the bathroom after doing that because if I have to have these images in my head, so do you. Don't leave me alone with this, please.)

When all is well and I'm on the right medications all of my illnesses basically hang tight and don't affect my life too much. My life may not be hugely exciting compared to most people's, but I could successfully (per my performance reviews) hold down a full time job and every so often go out to catch a movie with a friend. There's accommodations I have to make which people without these illnesses do not but again my life is livable.

When things start failing, however, that's when a domino effect happens and all the illnesses collapse on each other into a nasty spiral. This is what happened to me in 2015.

It started with my migraines getting worse. I went from an average of 3-4 migraines per year to at least one migraine a week. And when I say one I don't mean an hour or so of pain, taking meds, and moving on with my life. I mean once the migraine kicks off it stays with me for days afterwards, moving from one side of my head to the other, so that the majority of my week is spent flat on my back, in the dark, unable to do anything.

Then my depression and anxiety got worse, which I'll talk more about in a second. But the thing with mental health issues is that one of the ways you address them is with changes in medication. You know what medication also affects your brain? Migraine medication.

So at bare minimum my psychiatrist, neurologist, and I start a dance of figuring out medication adjustments to somehow get me out of pain without making my mental health even worse. This is hard enough on its own, but then we throw in the thyroid issues. A wonky thyroid gives you, among other things, depression. The ability to absorb thyroid medication is affected by lots of things including, drumroll please, the other medications you're taking. So now the thyroid medication needs to be adjusted. Which affects my energy levels, which affects my depression and anxiety and my vulnerability to migraine triggers, which means adjusting those medications, which means….

You get the idea. It's not a simple fix. You can't just up the antidepressant by 50, lower the thyroid hormone replacement by 25 and call it a day. There's no one formula. You have to try things out and see what works.

You also have to prioritize. Right now the mental health stuff gets top priority over the migraine. Reason being even though the migraines are so frequent and painful they make me wish I was dead, unchecked depression and anxiety have me start making actual plans to put myself in my own grave.

It's not fun.

I am working on this with all of my doctors, and it's not just medication by any means. There's therapy and other stuff thrown into the mix as well. But I use the medications as my example because they provide an easy, tangible thing to point to. Before they worked and thus so could I. They stopped working and so did I.

I'd love to work! I really would! I was good at it and I did things I enjoyed, like teaching and building complex reporting systems with databases and spreadsheets. But now I can't.

What are things like now? Well I still have migraines. Not as clockwork as they were a few years ago (I used to get them starting Thursday nights on the dot, which apparently is not uncommon among migraineurs) but I get multiple ones every month and they do still last for days.

On top of that we have the depression and anxiety. I get suicidal. I have panic attacks. I get easily overwhelmed and resort to self-injury.

The fear of migraine triggers and panic attacks added agoraphobia to the mix. I have a hard time leaving my home, even for something as simple as getting the mail which requires walking about five steps away from my front door. Laundry facilities are in another building so before I had my service dog I frequently went without clean clothes (yes, even underwear) because that was easier for me than dealing with the fear of going outside. Even going to my doctor appointments pre-Covid was hard. Going to the store to get groceries or my medications was even harder.

(After Covid my life was comparatively easy. Like I changed my twitter handle to say, I was agoraphobic before it was cool. Stay inside for months at a time and avoid human contact? Gosh darn, if you insist!)

I'm exhausted. Constantly. I sometimes have trouble sleeping due to anxious thoughts but the majority of the time my trouble is staying awake. There are certain times of day where I can't even stay awake if I wanted to, so I have to avoid scheduling anything for then.

My concentration is shot. I have difficulty remembering things. For example, part of the disability application process was being evaluated by a doctor who asked me to do that memory test you all mocked a former president for failing. I couldn't do it. My memory was even worse than I thought, and the realization that I couldn't recite back five random numbers was so upsetting I burst into tears at being asked to try. The stress of that evaluation was so much I started self-injuring during the middle of it.

I have problems with communicating. When I type it's like my brain is affected by autocorrect failures. Like I'll mean to type something like "phone" and instead will type "alphabet." In other words a word which is completely unrelated to the thought I was trying to complete. I'll also accidentally leave words out entirely. Anytime I write something like this newsletter, it takes me hours upon hours to get the words on the page and then review and review and review them to try to make sure I caught all the errors. I usually don't.

(I actually debated whether I should bring in an editor to help with the newsletters but 1) I can't afford to pay someone to do that and I don't feel comfortable having that labor be unpaid and 2) I figured it might actually be helpful for people to see the mistakes. See how even with multiple proofreads over the course of days I still miss stuff, so you get an idea of how my mind just can't catch these things when before I was the first person to notice if a comma was out of place.)

Because my brain does these autocorrect style fails on its own I have even more problems when texting on my phone which has actual autocorrect in the mix. I hate texting on my phone for that reason. If I don't notice my own errors I sure as heck don't notice the phone's before I hit send. Then I feel humiliated when I realize it and how stupid I made myself look.

The concentration and memory issues are verbal as well. Not all the time, but there are moments when my brain just freezes. Like I'll forget my own brother's name. Not even a "Oh it's on the tip of my tongue" kind of a thing. It'll feel like I never knew it at all. Again: not constant like with the writing, but frequent enough. I bet anybody who paid attention would notice how often I try to slip past using proper nouns because I can't get my brain to provide them.

I can't do things that I used to. I used to be able to cook, like properly cook and I loved it. Think multi-course holiday meals made for my family which included things like lasagna made entirely from scratch including the pasta and the sauce. Now cooking makes me scared. Following multiple steps is too much. Keeping watch over multiple things is too much. If it's a stovetop I can manage boiling some water for tea or pasta. Otherwise no, it's not happening.

I have had a tiny bit of improvement in this area. I went from totally being unable to make anything for myself to being able to cook some simple meals in my crock pot. Think things where you dump the ingredients into the pot and walk away for hours while it cooks. But it's still nowhere near where I used to be. Bowls of cereal are a frequent feature in what I can manage to eat.

(As I'm typing this I'm coming past 4pm which is one of the times my mind starts to slow down. I'm tempted to try to keep typing and not edit what I write just so you can get an idea. I probably would except the results would be too upsetting.)

I also have no energy or ability to do things like basic care. I have a washing machine in my apartment now, which helps with the laundry issue. But things like vacuuming, dusting, even cleaning myself are not easy to do. I keep track of when I manage these things on a calendar and suffice it to say the days I have migraines are more frequent.

(Aand it's now five minutes later than the previous parenthetical and I honestly can't keep going. My brain has hit a wall. I'm going to leave this note in for the record and come back and try to finish this up later.)

(Nearly 10pm now and I'm back.)

Hopefully you start to get the idea. It's hard to work when you're frequently in pain and it's difficult to leave the house. Working from home sounds ideal except again there's the pain issue plus on top of it all my concentration problems. Even writing out this letter has set off stress reactions and heightened anxiety.

Which is why even the government agrees that I'm not in a great place right now.

Thus yours truly is capital-D Disabled. Certified, bona fide, you name it. Uh, yay?

On the actual plus side I can now speak from experience on things like dealing with the disability application process, the way social services in this country are both good and bad, and more. So look for that in future updates.

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Other Noteworthy Stuff

• JK Terfling was in the news again this week, so if you missed out the first time I do have this essay on how if you want to boycott her you have to do it all the way.

• Also added to the archives was a tweet thread I did at the start of lockdown where I discussed the similarities between the initial reaction to COVID19 to the Great Plague of London. If you read the initial tweet thread see if you can spot the joke I wasn't too fond of the first time and thus edited out in this version ;)

• And of course I recognize that I can't mention a pet, even briefly, without paying the pet tax. So here is a picture of my service dog enjoying the snow.

Lookit that widdle face!

Thanks

I wanted to close things out with a big thank you to everybody who gave likes, RTs, and subscribed. I got more subscribers starting out than I thought I would and only one email address made me wonder if it was a bot! That's huge.

Also shout-out to the person who, noticing my name in a YouTube comment section the other day, told me that my writing about mental illness back in the LiveJournal days meant a lot to them. I'm leaving their name off in case they want their privacy but if you're reading this thank you. Your timing was impeccable because I was waffling about whether or not to try doing this newsletter when I couldn't guarantee that my illness would let me follow through. Someone out of the blue saying my stuff meant something to them seemed like a sign from the universe that I should do it, so thank you. =)

Outro

And that's all for now! If you enjoyed, please feel free to share. If you got this from a share and enjoyed please feel free to subscribe. Thanks for reading!