My problems with anxiety started when I was working in Home Group, sometimes around summer 2016. It always felt the same: something happened at work but I didn’t understand the seriousness of the event till a good few hours later, sometimes even the next day, and when I realised what happened it felt like someone kicked me in the stomach and I had to immediately lay down. But I didn’t feel scared, I just felt extremely tired and it would take me two or three days to recover from it. That was when I was already on antidepressants.

The proper panic attacks came later, after my first psychotic episode. By ‘proper’ I mean that was when I actually felt scared, of everything. Employment Tribunal judges, Employment Tribunal emails, the fact that I may be unable to go back to my flat, the fact that I may never recover and that nobody will ever believe what happened to me.

Both of those experiences, although different, were really disabling. I spent hours lying on a sofa, almost unable to move.

When a doctor in psychiatric hospital in Poland finally put me on strong anti anxiety meds, pregabalin, things started getting better. Unfortunately the meds, both pregabalin and olanzapine were making me tired and switched off so I went of them gradually after around a year, but I wasn’t getting any less tired.

I visited GP several times and had a couple of blood tests but nothing was ever found. My main symptoms were tiredness and waking up with my heart racing, like if I was running, but I didn’t feel anxious, it seemed like a totally physical thing.

And what we often do nowadays when we’re tired? We’re go on Facebook, it doesn’t require us to do any thinking but it’s so good for passing time, isn’t it? And it leaves us with an impression that at least we’re doing something because doing nothing is seen as a sign of a real laziness.

The feeling of a racing heart on walking up finally went away, but I still used to feel tired a lot, although it was on and off. My energy was actually quite good when I went to Poland last year, even though I was actually anxious a lot due our family situation but as weather was nice and I was staying in a hostel by a river, I used to spend a lot of time outside.

The very confusing problem with my tiredness is that I can ‘snap out’ of it if I have to – I can go to work for 12h shift and I’m perfectly fine even though while being at home it feels to me that I’m too tired to even make myself a cup of tea.

Recently I started thinking again about why I am so tired. The thing is, it’s been a year since I am pretty much not working, I should be a bit better, you know? Why my kitchen is almost always in a mess if I like it clean? I don’t quite understand. I mean, yes, I had my share of drama during the last year, but still I spend vast majority of my time in the comfort of my own home and it feels to me like things should be better.

As you may know I tried to spend more time on social media recently, trying to work out what is happening in autistic community. I didn’t experience any drama (except of that Facebook group where neurotypical parents ask autistic people for their opinions about what is happening with their autistic children; the group believes that autistic people shouldn’t modify their behaviour in any way, and yet, when I was being my natural self, I was being called rude and told I’m arguing, go figure), and in fact most Facebook groups are run really well. I was however getting upset about the things happening on Instagram, that I described in more details here: https://autisticandme.com/2022/05/11/instagram-is-for-sharing-images/

And the thing is, after around two weeks of doing all those stuff on social media I started waking up with a racing heart again. I didn’t feel anxious, but it made me think. Finally I decided to unfollow all Instagram autism advocates and do my own thing how I see fit. Later on I also cleared my Facebook account by unfollowing and unliking as many things as I could. I didn’t want to close my account, I thought that getting the grip on my feeds is going to be enough, and initially it felt like that indeed.

Yesterday I was doing really well, I went to the radio in the morning, stayed there for a few hours, then had some errands to do in town and finally grocery shopping. I was out for around 7h and yet, I didn’t feel the need to lay down immediately after getting home. I even contemplated going to the gym for a few minutes (I haven’t been for over a month again). I did check my Facebook a couple of times during the day and every time I had the same feeds, including only two new ones that appeared in the morning. I found that strangely comforting.

And then, around 7pm, two new feeds appeared and I felt quite distressed. It did seem to me that I associate new feeds from organisations with ‘people being at work’ so I prefer them in the morning. Having feeds in the afternoon would feel to me like there are people out there who are not managing their workload efficiently, and having them in the evening means there’s a disaster happening.

And yes, I am fully aware logically that’s not how it works, organisations that I have feeds from may be based on another continent or feeds have been scheduled in advance to appear when majority of people come home, but this explanation doesn’t calm me down at all.

As I realised I was getting quite distressed, I went to Facebook settings to see what else I can do about that and I found this:

I already had a similar experience with Instagram:

Instagram is being sarcastic with me

Instagram is owned by Facebook. Oh, and I do believe your Facebook settings don’t tell you to shake your phone – it’s a really long story, behind the scope of this post, but I discussed it somewhere else on my blog.

So anyway, when I saw that ‘shaking your phone’ advice the first time, I thought it’s all about sarcasm. But when I saw it on Facebook as well it meant they don’t give a f**k. And they probably don’t, because why would they?

As going through settings I also realised that some of the businesses I unliked are still on my liked list. Please tell me anyone, how did that happen? But the worse was still to come.

Can you see ‘1’ on the notification bell? Well, it suddenly changed to 7 within a few minutes and I didn’t know what was happening, I unfollowed pretty much everything, I shouldn’t have that many notifications out of nowhere. That was already quite upsetting, but when I checked what’s there, I could only see one new notification, so that was already like a double error. I tapped on that notification so the number should have gone down to 6, but it didn’t. I then started going through old notifications and randomly tapping on those that weren’t already checked but the ‘7’ still didn’t change – that was already triple error then. I could not take it no more, I felt exactly the same way like when I worked for Home Group and something happened to me – I felt that long forgotten kick in the stomach and the immediate effect of being depleted of any energy.

That finally made things clear to me.

And do not tell me to think in a different way, because this is how I think: I am fairly flexible, you know? I can work around a single error, I can somehow tolerate a double one when I’m well, but the triple one is what I cannot cope with. And I presume I’m not the only one as I’m not the only autistic in the world.

Neurotypicals say that some people can’t cope with social media because of the drama, or jealousy – it’s possible that’s how they see us. They think that’s what’s difficult for them, so for us it must be even worse. But maybe it’s not even about that at all? Maybe it’s all about our inability to control what’s appearing in our feeds and when, and all the triple errors that sometimes happen there.

I had no other choice but to deactivate my account. I didn’t want to delete it as I have some memories there. I really hope that will do for now. I feel really tired today again but I’m hoping things will get better.