What I want to say in this post can actually be said in very few words; It’s not enough to know you have pushed yourself too far beyond your limits, you need to back it up with action.
Recently, I decided to apply for sick leave. I’m still suffering from some long-term effects of corona – long covid as some call it. Before you ask, I did get vaccinated three times so far and I am so very grateful that I got vaccinated because I have never been so sick in my whole life and I feel certain the vaccine helped me get through it far better than had I not been vaccinated. I dare not think what might have happened if things things had been different.
The long-term effects are really annoying and frustrating though, especially because often I feel people do not acknowledge the reality of it – they disregard what I say and claim that covid-19 is merely like an influenza and nothing else. Those people make me feel like I am complaining and making a fuss about nothing.
Well, it might be true that some people don’t get as sick as others do – or maybe it’s more like some variants of covid-19 doesn’t make people as sick as other variants, but for me it was not like influenza.
I have never been so sick, nor have I ever struggled so much with long-term effects before. I got the delta variant back in early December and in late February of this year, I am still struggling with everyday life. I get a much higher dose of asthma medication and I now carry an emergency inhaler with me everywhere (something that was never necessary before) and even with all this, I still can’t walk as far as the bus stop without feeling like I’ve just run a marathon. Going shopping for groceries in a nearby shop has me so exhausted I can barely do anything the rest of the day.
Everyday I struggle to stay awake past 6 o’clock in the evening. It’s not just being tired all the time either, I’m clumsier and get hurt easily, my body and my muscles hurt, I have a runny nose and the headaches – it’s terrible. I have suffered from migraines since as far back as I can remember, but never have everyday headaches felt so terrible as they do now.
Then there’s the brain fog and the lack of ability to focus on anything. Words are more difficult for me, not just remembering, but somehow also just the ability to grasp the meaning of a word can be a challenge.
Reading and writing makes me nauseous and often gives me headaches. I have almost not written anything for this blog for a long time because I have been physically unable to.
Yeah, it sounds crazy, doesn’t it?
I ignored all this and forced myself to work and study as hard as ever and even when I could hardly follow along in class (I had just started a 10-week programming course), I just forced myself to work even harder. I cried a lot and within a short period of time I forgot why I was even working in the first place. Right now I can barely remember why I chose this path or what I loved about system development in the first place. I know for sure I did love it once, but lately I can’t remember why.
I know, I almost burned out. I didn’t though, I stopped myself in time because I realised something very, very important. That just knowing that we work too hard, just being aware that our boundaries have been crossed is not enough. It’s not enough to say it either. Other people are not responsible for respecting our boundaries.
We are.
Sometimes, we have to back it up with action. Sometimes, we have to say ‘stop’ even if we only say it to ourselves.
I don’t like being sick and honestly, I am still terrified my boss will fire my because I am sick, but even if he does, it’s okay. You know why I feel that way? It’s not that I don’t like where I work or what I do.
I love the place I work, you see, I really do and even if I am sick now, I can’t wait to go back and see my lovely colleagues and join them working on projects. I would be very, very sad if I got fired. The reason I say it’s okay is that I can’t do anything for anyone right now, I can barely function for myself, let alone work or study or anything like that.
I was crying everyday because I was tired and sick, and even as I was crying, I was sitting in front of my computer forcing myself to work. I was fighting to sit upright; I was too exhausted, and I couldn’t remember anything. I read the same sentences over and over again, because the moment I looked away from the text, I forgot. And yet, I forced myself to keep working.
I barely passed the first half of the course and then, as I sat myself down to work the day after my exam, I realised that my doctor was right. I needed a break. Nothing is worth forcing myself to this extend, nothing. I knew that if I chose to continue in the same way, I would end up quitting at some point, because I would have nothing left at all inside of me.
So, I sat there and wondered if I was ready to quit or if I wanted to continue, and I realised I didn’t want to quit yet. I am not saying that’ll never happen in the future, but that is not important at all. The only thing that matters is that right now, even at this very moment, in spite of everything – I want to continue. Problem is, I cannot continue in the same way and that’s when I realised, I had to apply for sick leave.
Applying for sick leave has always felt like a failure to me. I know, I know. To a lot of people this is as simple as picking the up the phone and calling in sick for the day. I was never good at that. I thought that if you can physically go to work, then you have to go to work.
I was wrong.
To me, forcing myself beyond my limits is relatively easy. Yes, I get hurt in the long run and yes, I do have horrible break downs and meltdowns because of it. Those things are not new to me, though, I can even get hurt by the sound of someone’s voice if they speak too loudly and then I might break down. Something, most people think is ridiculous, at least in my experience.
Life with autism is really a balance; how far can I go today before I break?
People don’t expect more from me than they do others, but that is part of the problem. I can’t do what others can and therefore it can be harmful to me when I try to adhere to the same boundaries as others do. I need to set my own and not care that other people might look down on me because they mine boundaries are different.
Don’t pretend they don’t. People expect, whether they are aware of it or not, other people to behave in a certain way and if we don’t behave the way they expect, then something has to be wrong with us. To some, being different doesn’t just mean different, it means being broken.
Broken is bad, but that doesn’t make sense either. Nothing was ever so broken that something new could not be created from its pieces. We decide what to do with the pieces. Why not make something even more beautiful than before? Why insist that something is either worthless or in need of fixing? Just like the Japanese art of repairing broken pottery called kintsugi – something even more beautiful is created from broken pieces.
Anyway, I always felt I had to live up to the general expectations people have.
Things like; faking eye contact, small talk, pretending to understand a joke that doesn’t make sense and laugh to be polite, forcing myself to shake hands or going to social gatherings I have no interest in.
The problem here is not that I am doing my best to be a part of something that I am not naturally a part of and will probably never feel like I am a part of, the problem is that I have no idea what people expect.
I understand things literally. If someone says to go to work if I can, then if I am capable of getting there, I will go. I might feel absolutely horrible, I might get even more sick when I get home or even hide in the bathroom at work and cry because I am so sick I can hardly sit up straight. I might go home and cry myself to sleep because I feel even worse and the thought of going back to work the next day like this makes me terrified. But if I can, then I’ll go.
Because no one ever said it’s okay to stay home if I get better because of it. People say “don’t go to work if you can’t”, but that isn’t something I understand. Or it wasn’t before, at least. I understand now that people don’t mean you have to go to work if you literally can, but rather they want you to not push past your limits to do so. Yeah, some days you have to give more than you can, but it can’t be like that every day. We need to respect our own boundaries and limits. We need to take care of our mind and body.
I am afraid of the consequences of calling in sick or asking for sick leave, because I was trying to be like normal people. People expect me to be like everyone else and if I pretend that I can live up to that, then I’m the one breaking in the end. I did break, more than once in my life. Every time I would try to pretend nothing was wrong and every time I struggled to be what normal people expect of other normal people. Oddly, I think in trying to be like normal people, I was doing the opposite. They call in sick if they are sick, but I didn’t.
This time, I’m going to do things differently. I am going to be me, be honest about my boundaries and honour them with action if others do not. I will create something beautiful from all the pieces around me and it’s okay even if I have no idea what it’ll look like in the future. I know that treating myself with the same love and compassion I would anyone else in my life will be a great start. Time will tell where we end up.
