A little about my disability status…
In my other post I mention that I have ‘disability status’, I wanted to make a separate post to explain that quickly and talk a bit about just how ill I was when I got “disability status”.
It was a few years ago that I got my ‘disability status’.
What that means is that they (the government) give you a small stipend to live on, because you are accessed as not able to function, which basically in our society boils down to not able to work.
Needed for people who are unwell like me, because that’s what you are when you can’t function normally, disabled.
In the most basic of senses I couldn’t, and still can’t, “function normally”. If I had gotten any of the jobs I’d applied for, I probably wouldn’t have held them. Realistically I think at most I would be able to work part time.
I am still not well, but at that time I was even less well.
Here’s a texty window into at least part of what I was struggling through back then…
*Trigger warning* This is a post which talks about mental health struggles, be advised
I’ve had insomnia and sleep issues since childhood, but sometimes it’s exacerbated by something else, like my OCD.
At the time I had applied for disability my OCD was back to being out of control, and I had the inexplicable need to clean the same pot over and over and over, all night long.
My aunt had just died and so on top of my own illnesses I was grieving deeply.
Thinking about death all the time, not because I was suicidal and wanted to die, but because I was terrified, utterly paralyzed by the reality of my own eventual death. (I still can be)
When I did sleep I would wake suddenly and in a panic, with no understanding of why. Literally jumping out of bed in fear; often jumping would lead straight to running; I’d run while throwing on my robe, rushing down the hall.
To where? I had no idea, I just felt the need to escape.
During the day, if panic overwhelmed me, I would still have the urge to run. If I was out and about I would often make a b-line for home. If I was home I might run down my street, or even up to the track just a few blocks away.
At night a few times I made that same dash outside, and up the block in my pajamas. Once with sopping wet hair in a house robe because I’d panicked whilst in the shower.
There was no telling when the panic would set in, and sometimes it was just a thought, about my ‘inevitable death’, I hate that word inevitable.
But often as not there weren’t even any thoughts associated with it, just panic, no discernible source, and no accompanying cyclical thoughts. I didn’t know how to cope with it, it was like no anxiety I’d ever had to push against.
Mean while, despite my strong urges to run, there is no escaping from your own brain.
At first I found that hard to remember while panicking. Now I can remind myself that running won’t make it better, it will just get me places I may not want to be at 3am.
…Sometimes though, I still wake up that way.
Just last night I was trying to claw my way over the baseboard before I could remind myself that I can’t run away from my brain.
Sleep had an added foe, I used to wake up having been scratching myself in my sleep. I’d rake my arms and chest. A few years before I’d had the same problem, and to try to curb it I’d started wearing sweatshirts to bed, but I had nearly gotten heat-stroke that way in the summer. And had been relieved when it stopped being an issue… for a while.
So I tried to find a new solution, I decided on cultivating a habit of shoving my hands in my pillow. Pillows can handle it.
This didn’t always work, but eventually it was back to not being an issue again. I mention it, as I said at the outset, just to give you and idea of how unwell I was when I applied for disability, and at that time I had yet to figure out the pillow trick.
I also had no energy when I was calm. Only when I was anxious could I seem to move around, but that wasn’t free movement, that was anxious energy, which only seemed able to be spent on things that didn’t get me anywhere, or things I disliked.
For a while I tired to force myself to clean things while anxious, but this lead to more panic attacks because I was extra uncomfortable, and also some carelessness leading to injury.
This was also a point where my panic would go on for so long that I had been self harming in an attempt to distract myself and calm down. It’s an awful reason to self harm, but most reasons are. In that stream of anxiety and paralysis alternating, I felt I had few choices readily available to me.
Sensory overloads became very common, where I couldn’t enjoy anything or calm down because the ability to understand language was mysteriously absent. That was extra frightening, because before this they had usually lasted on average between just a few minutes and half an hour, many a few hours for a really bad one, but these new ones could last the entire day sometimes.
I managed to apply for it, feeling utterly incapable and crazy, but while I still felt like I could get some things done, and like I needed to get this done because I clearly wasn’t getting a job, and the realization that if I got one it wouldn’t last was sinking in.
It was good timing because that was just before things got even worse.
The agoraphobia set in, for all sorts of reasons. The threshold of my door started being crossed only when I was in a blind panic, trying to run. Or when I knew I was with someone safe… and then it started to be a struggle to even go out when it was with someone else.
And my feed back loops of panic, while waiting to know if I’d get money or not, became even more intense.
I tried to go see my doctor, went on several medications. Most made the anxiety worse, and the only one which didn’t (ativan) gave me intense asthma attacks that lasted all night. That’s what’s known as an allergy. When they warn you on the packaging “don’t take if you have difficulties breathing” that’s what they’re talking about. I was so used to asthma that I didn’t connect the dots til later, when my psychiatrist pointed out that’s what it was.
I just felt it was very uncomfortable.
Also, I was so desperate for something, so I tried to lessened the dose, I wanted to find a way to use it so that the asthma attack it gave me was minimal enough to stand. (this ended up being less than a quarter of a single pill, and the pill was the smallest dose the pharmacists carried, and I would still wheeze all night.)
It barely did anything, so I gave up on it.
And it was at this point, feeling utterly defeated, that I was awarded disability status.
Having even the tiniest bit of stability made me feel a bit more healthy.
I still had panic attacks every day for quite a long while, but some of the positive effects happened within a month or two.
For instance, I started being able to sleep for at least 4 hours at a time again. (a vast improvement believe me. — I’m glad that I can now usually average about 7 hours of restful sleep. but at that point 4 was bliss)
I managed to have things I could enjoy again, like being able to read consistently.
Chores still took most of my energy when I did them, but I could do the dishes without being stuck in an endless loop. That was great!
Despite the amount of time I still haven’t recovered from how bad that breaking point was.
My agoraphobia is still with me. That had been the first time I’d experienced it.
The sensory overloads stopped being as frequent, and most of the time were shorter again, back to averaging 15 minutes to a half hour, and usually just a few hours at most. (no less frightening when they do happen, I am terrified of one happening in public, where I can’t get someplace quiet, and where I might get lost if I can’t understand people or signs– but still that’s less likely the less anxious I am.)
There are bad days, but even my worst days aren’t like the “okay days” at my low point.
I am disabled. Even if I’d like to not be, I am.
At least I live somewhere that there’s is stipend for me to live on at all.
I need it, my crazy doesn’t have a hope in hell of fitting into the work a day world.
How about you folks, are you ‘disabled’?