Disability Status (A post about some of my struggles)


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’?

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10 thoughts on “Disability Status (A post about some of my struggles)

  1. Pingback: A breath outwards: stress, and how I was married before my wedding | Anxiety & Oranges

    • Sometimes I find it’s very interesting to be disabled.
      I get to be part of such and interesting and varied community. (With people like you! <3)
      Our struggles as disabled people are sometimes overlapping, so that society sticks us in the same boat, but every disabled person I meet or come in contact with is so unique! 😀

  2. *hugs*
    *more hugs*
    I would describe myself as disabled at the moment, but I’d be pissed off if anyone else did 🙂 Just joking (sort of!). My depression and anxiety have meant I haven’t worked per se since about May/June last year, though I have been doing some writing/editing – it doesn’t pay much, but it gives me some sense of self-worth. I’m not eligible for benefit payments and am still trying to get what’s called a Health Care Card, which will help with reduced prescription costs and car registration costs. Right now, my battle is knowing I need to work a certain (small) number of hours for the dearly beloved and I to stay afloat financially, but not knowing whether I can do it or not. Also I am self-employed, so working in my case means going out and finding / winning contracts, which is of course difficult when you’re feeling so down on yourself.
    Some days my anxiety is so bad I can’t leave the house. Right now I’m in a numb state, and sometimes I get paralyzed (all part of my psychosomatic superpower). Not being able to move or communicate beyond nodding or shaking your head counts as a disability, in my books 🙂 Ah, you’ve got to laugh. Even if you grimace while doing it!
    I’ve thought about getting some shitty little job like stacking shelves at a supermarket, but given the high rate of unemployment around here at the moment, I don’t know how lucky I’d be, or even whether I’d be able to deal with that sort of work. Also I am very highly qualified and don’t know how getting that sort of job would play into the old self-loathing loop – I’m probably being a job snob, but there you have it. I’d hate for someone I know to see me doing that sort of work. It would obviously be a big deterrent to prospective business clients.
    *sigh* it’s all a bit of a mess, isn’t it?

    • *Hugs!* 😀
      It can be hard to get used to the word, reading pages and blogs of disability advocates (especially self-advocates) has been helpful to destigmatizing the term for me. And learning many things about various other peoples disabilities.

      Actually speaking of which, are you in contact with your local group of disability advocates?
      They may be fairly versed in applying for and seeking the benefits you’re trying to get and might be able to let you know exactly what the government is looking for in the paper work.
      Sometimes it can be about key phrases, I know it is out here.

      That’s a definitely a pickle. Need to go out to get clients, need to be well enough to go out.
      Extra pressure doesn’t always make the chore easier to get to, and I understand your hesitation.
      Self employed provides a lot of freedom, but it isn’t always easy.
      Having a ‘day job’ is something a lot of people end up doing. Hm, but definitely don’t force yourself into it if you think it’ll make you feel worse. Perhaps if you do end up needing something, pick something where you only have to worry about coworkers rather than potential clients. (data entry?)
      If you’d rather not, then maybe just focusing on getting more well. Perhaps you may discover you have the energy to get done, the things you need, after just a bit more healing? 🙂
      Ah, just a suggestion, but you might also want to set yourself a calendar date, to talk to your dearest about it, because being in the loop ahead of time may provide the opportunity to explore some extra options.

      Agreed with the grinning. Sometimes there is nothing you can do but laugh and smile.
      The worlds sense of humor (not that it’s got agency, but you know what I mean) is occasionally funny in the most grim and bitter of ways. But for whatever reason, that mixed up action–> emotion thing maybe, being able to laugh about it makes me feel better.

      A bit, but bright side: Messes are fixable.
      Life messes are alike, whether emotional, situational, or physical, they can be broken down into components that contribute to them.
      Like internalized communication barriers, and habits of thought or action that we engage in even though they lead to extra paralysis.
      If we sort through a mess then we can know what’s in ‘the pile’. As we find things we can put them away where the need to go, and make note of the stuff that isn’t helpful (which isn’t always easy to get rid of, especially the “heirlooms” which have been foisted upon you), keep reminding ourselves to junk it, and then sweep up the broken bits as best we can, maybe try to glue something back together if it’s important. Even if our ‘floor remains stained’.
      It can take a long time to do that, especially with emotional messes, but the steps are the same, and it can get sorted. 😉

      • Thanks for all this!
        This morning I feel a little more optimistic and have made a list of eight things I’m ready to tackle, the work issue being one of them. I’m going to follow tips from Ellie Dodge and Sharktoothsweater to help me work through them, “in the fullness of time” (one of my favourite phrases). We’ll get there.
        And in the meantime, you and I can continue smiling and laughing and ranting and perhaps occasionally crying together 🙂
        XX DB

  3. I love how you write. You write how I wish I could write. I’m actually currently writing a piece on my years living with epilepsy, which admittedly isn’t so bad but I just hate it.
    I am glad that you are writing, it is very helpful. And look at all the support you have here 🙂

    • Thank you Janey! 😀
      Writing styles are always a work in progress, I just cobble experiences together, sometimes it works, sometimes it’s too branching. Certainly if you work at it you’ll improve. (I already like you’re writing though, so it’ll just rank up and become more epic!)

      I’d love to read that.
      I’ve seen a scarce a few things written about living with epilepsy, and I found them not super in depth, but still sounds very harrowing to live with.
      I mean if you have it I’m sure you get used to it, but from the outside in it’s a really fascinating (but sometimes scary) experience to read about. I’ll look forward to when you post it! 😀

      True! Which is pretty awesome. 🙂 I’m really glad to have people who care.
      It’s odd to me sometimes, my memories of it are so very coloured by emotions I no longer experience often.
      However I think it is good to write about it honestly. I think having a really good look at what other people experience from the inside out is one of the best ways to build up our empathy. (since it is a skill 🙂 )

    • Thank you Aussa 🙂 I’m not sure it’s brave, but I appreciate the compliment.
      Yes, absolutely, it’s very valuable to not feel alone in this struggle. I know it has helped me to read what other people experience.
      I think it can also be useful for those people who are just wondering, and wanting to learn/understand/empathize with those who do have mental health struggles. Whether they know someone who does, or even if they are just curious.

      But of course I also write for myself, because it does actually feel better to admit these are my experiences, so that it doesn’t have to be a secret, or something I wall away.
      I think really wanting to share ones stories is a very natural and positive thing. :3

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