Asperger's,Autism Spectrum Disorder

Ashes

Letting go, not just of who I am but also the idea of who I might be, is scary. It’s terrifying. When I wrote my last post, I was certain I was about to break yet again – I could see no other way out. So, I accepted my fate. It was not easy, but I knew that if I didn’t it was only a matter of time before I would break anyway, so I decided to face it head-on.

Of course, facing something head-on implies that I did something magnificent… like a big gesture or something. Like when you walk up to someone because you know they are angry with you and then ask them why, even though you realise you might have done something very wrong and you need to work hard to make up for it.

I did nothing of the kind.

I would have, but I didn’t have the energy or the opportunity. What I did do was walk slowly to the office, number 15, at my local employment office and sat down quickly – my legs would have buckled under me had I waited just a few minutes more. My hands were shaking, and my mind was blank. I knew, right at that moment, that they would not help me just like always and that they would yet again try to convince me that they knew what was best for me.

My eyes could barely stay focused and I felt like I was dying on the inside. Then, suddenly, this wave of calm came over me. I can’t explain it, but I just felt calm. If this was my fate, then I had told myself I would accept – I had even started to accept, but I didn’t feel it in my heart.

Sometimes, I know things in my head that my heart simply won’t agree with. Sometimes, my heart is the smarter of the two. This time my mind and heart became one and I felt I could finally open up and explain myself better.

I wrote an e-mail after my last post. That e-mail was a conclusion, one might say, of the many feelings I had worked through while writing that last post. I think it was a pretty good e-mail, but it had been difficult to write.

All my life I have struggled to survive on my own, always stubbornly insisting I can do everything on my own. Not because I was able to do everything on my own, but because I wanted to do it on my own.

No one helped me in school. I had bullies, never friends. People who abused me, never people who cherished me and you know what? I wanted to be cherished. I still do. I refused to accept it in my heart in spite of what my mind told me.

Because I was like this as a child, I became colder as I grew up. Distanced. I could share most of my pain, but not that I was incapable of handling it. It was fine to admit my failures, my inexperience, my stupidity, my naivety, my inabilities and all other things I felt I was lacking. All except the things I considered too embarrassing to share. Things like the fact that vacuuming is almost impossible to me and I need help doing it because the sound is so horrible to me that I can have meltdowns and end up crying in a ball on the floor. I don’t tell people that. I am too embarrassed that those little things others complain about because they are boring are things that I can hardly handle on my own.

I have been feeling down for a while. When I say that, in all honesty, I feels like a lie. It’s not, but it feels like one. Saying I have been falling apart and that I don’t know how to get better feels like a lie too – even though it’s closer to the truth.

I don’t know how to express what’s happening inside of me. I feel so tired, but I am not afraid of breaking now. I just still feel exhausted. I feel like I had to let go of myself completely, and yet I still feel calm in a good way. I feel like the words of Lao Tzu makes sense to me like they never did before, he said: “When I let go of what I am, I become what I might be.”

Just because things are changing for the better, though, it doesn’t mean I feel better right away. I feel calm and without fear, which some may say is feeling better, but I am still exhausted to the point that I am not sure I will wake up when I go to bed in the evening. A part of me can’t help but think that I am so exhausted that as I close my eyes, they might never open again – but I’m too tired to be afraid.

Okay, dramatic, I know. I don’t want to die. I am just too tired to live sometimes.

It gets better, though. In time. I am already feeling a bit better. Like the fog in my head is lifting slowly, but steadily.

I never understood why others expect me to feel better right away when something has changed. It’s like they think they solved the problem, so why won’t I just get over it?

My body doesn’t work like that, that’s why. When I’ve struggled and struggled, I won’t feel better just because someone tells me things will be different now. That is the moment I can start to feel better, but it takes a while for me to get back to my old self again. I need to rest, to eat properly and drink water and sleep a lot. I need to be alone and not talk to anyone too. That’s how I start to feel better.

I don’t really feel thirst or hunger unless I’ve forgotten to eat and drink regularly for quite a while. I can go a week and barely drink or eat, not because I don’t want to or because it’s difficult to cook, simply because I forget.

I monitor my water intake now, which does help, because I can check if I forget to drink water every day.

This forgetting about food and drink is not really about being depressed or anything like that – although my dark periods definitely make it a lot more of a challenge to do all these everyday things.

It’s because I can’t feel my body. I don’t know how to explain or express this in any other way, but I’ll still attempt it in a few words now.

I am aware of many different things when it comes to my body – like the tiniest string or clothes label out of place and I feel it and suddenly it’s all I can focus on. The wrong fabric and I feel like if I wear it, I’ll go crazy. I notice things, like the texture of food or drinks, I smell many different smells and hear all the strange sounds around me. They can all overpower me and drown out everything else so that all I can hear is a pair of heels on the floor instead of whatever that person is trying to tell me. Things like that happen all the time.

It’s like everything outside of my body is easily noticed and very distracting.

What happens inside of my body, not that different – and yes, I am aware it can sound really weird, but hear me out.

When I have a task to do, like if I lost something and I have to find it, then I can walk for hours in rain and could systematically searching for that item until I find it and at no point do I really realise that I am tired, hurt or hungry or thirsty. My body has a function to do and it will do it. Then, the moment I stop, it all hits me at once. If I was hurt, then suddenly the pain is there, and I might not be able to move at all from it – even though 5 minutes before I was walking around like I was perfectly fine.

I can’t feel it. When I have my physiotherapy, the physiotherapist will tell me to do something and I’ll do it without being able to feel if it’s beyond my limit or not. Then, when I get home, I might have to be in bed the rest of the day because the pain in my shoulder becomes unbearable. I had no idea it was too much; I just did what I was told.

Some believe that my threshold for pain is pathetically low because I notice all these things and because they don’t see me until the pain is too much to bear, but I think it’s not really whether it’s low or not. The point is that I don’t feel it until it’s so painful that anyone would collapse from it. When I complain of a headache, it’s a pretty bad one.

I used to think I was weak as well. It was strange when I realised that I simply skip the steps between a little pain and a lot.

Complaining about pain was not something I felt I could do, because if I did, people would see how silly and pathetic I was. Now, I wish people would understand that I complain when I am able to complain – when it’s almost too much for me to handle.

Saying no is still very hard for me, because I feel like I am not allowed to. I think I might have to ponder that in a different blog post though, because what I really wanted to say in this one is that just like with physical pain, mental strain is the same – I only feel it when it’s too late.

So, when I’m tired like this, when I am broken and strained, I am already far beyond what I’m capable of. It takes a long time for me to get better.

I can’t just get better because things change. Like with a sprained ankle, it doesn’t just get better when I stop walking on it. It takes time to heal – especially because I didn’t realise, I got hurt because it was so bad it had become unbearable.

I am finally going to be able to get some of the help I need, and I am very grateful for that. I hope I’ll get better quickly, but I also need to respect myself enough to give myself the time I need to heal. We all do.

Kai

Life with Autism Spectrum Disorder is not always easy, but it doesn't have to be impossible. Since I was diagnosed myself, I have been trying to raise autism awareness and share my own experiences and thoughts about life as well as my search for a happy and fulfilling life.

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