It’s one thing to like having things done a certain way… it’s another when you’re almost completely reliant on someone else, or other people, to ensure that they still happen that way.
Having an illness that strips away your ability to physically do things yourself after being always (physically) independent is incredibly… awful. Being unable to dress yourself, get your own coffee, make food, shower, walk, move – at least without a lot of help and/or extreme pain – is heartbreaking, upsetting, frustrating. The pain sears my brain, and I’m left asking for help. I don’t like asking for help and I prefer to do as much of everything that I can myself. Left like this is a living nightmare… especially the part on being reliant on someone else other than myself for things. I’m a firm believer in if you want something done, do it yourself. Now I have no choice but to get someone else to do it instead.
The worst part of that is that I like things done in very certain ways – rules, preferences, ideals. I used to just be OK managing them myself, and therefore no one else really needed to care because I did them all myself. No one else needed to know, understand or care about it too much when I could do it myself. But that was then; this is now. Now I can’t do them. Other people have to. I’m always now reliant on another person, someone else, someone not me, doing them. It’s disheartening, disempowering, frustrating, annoying… awful.
Now they have to care, and I have to try to get them to understand that it’s important that things get done in the same way I did them, that I need to have things done “right”. The thing is, there’s also something else: when things don’t happen or get done in my specific way, in the same way, in the right way [for me], in the way I like them done, I react badly. It’s like my whole world crashes down on me. I become scared, confused, lost. Those routines are the building blocks of my existence. They keep me happy (or my version of happy), keep me grounded, keep me “OK”. (this is the bit where you don’t judge me…). I am not “a slave” to them; they are my way of making life work for me, to deal with my existence in this world – in your world… to make the “every day” stuff everyone else seems to be fine with make sense to me… otherwise I am lost and scared. I panic. My brain shuts down and it disintegrates. Then bad things happen.
But I am not crazy. Nor am I stupid, mad, demanding, manipulative, or anything else everyone has always called me in regards to this. It’s just me, and I can’t do anything about it. I’m scared… What do you do when you’re very, very scared? I didn’t say it was rational; it’s just real. My truth. My brain. My fear.
My panic. My Hell.
It’s apparently because I have this thing called Asperger. I wasn’t too happy to learn that. Ironically, even the thought of it stressed me out so much it made it worse. On the other hand, it was pretty clear when I read all about it that was what the “problem” was, though. My parents read about it and just went “… ohhhhhhh“. The lightbulb moment was clear with them. The general reaction apparently was: “Well, that explains a lot“… For me, though, it was just one more label to stick on the back of my collar, and I didn’t like that. I didn’t need a new label; I just wanted to be able to do my own thing again, my way. I had it, whether I had the label on my records or not. What I wanted was someone to give a label to whatever the hell was wrong with my body, then fix it. But that isn’t what I got. And it’s not fixed.
I have a diagnosis, but it’s not the one I wanted. I’m still stuck with being unable to do most things on my own. Thing is, just like pretty much most other people with ASD, a big part of being “OK” is that everything is the same. Take that away and it feels like your world is falling apart. When I could do everything myself, it was not so much of an issue. But when I’m almost entirely reliant on someone else to do it, then I have a problem. Good intentions unfortunately don’t make it right if it’s done wrong… and even though to everyone else it’s the thought that counts, I’m afraid I can’t deal with it if it isn’t right. I honestly can’t help it, change it, or “fix” it. It’s just how it is. I know… I’ve tried everything I can imagine to make it go away, and it just won’t. This is just how my brain is. It’s not like everyone else’s. It simply doesn’t really work properly.
If only I could accept it…
After more than 30 years, someone has finally told me why my brain doesn’t work properly. However, this is a diagnosis that doesn’t make everything all better and go away. You don’t pop a pill or have some surgery and get all better. There is no “getting better”. In a sense, there’s nothing to fix… it’s just a thing that makes you different. We don’t all have brown eyes, we’re not all one gender, we don’t all like the same things, some people are puppy-people and others are not… We are all different. OK, mine might be a bit stranger, but it’s just mine. My brain reacts differently to things, and that’s all there is to it. I have Asperger that you don’t understand, but maybe you have a strong affinity towards Gansta Rap music and a penchant for pink that I’ll never understand. That doesn’t mean either one of us is wrong. (Although pink of any kinda really is…)
And if only I really saw it all that way… If only everyone saw it all that way. (Not the pink-thing, the other thing.)
At the end of the day, it’s just a name for what’s wrong. It doesn’t change the fact it’s there, or ease my suffering – and yes, I suffer. It’s not at all pleasant being left lost, scared, and confused because something wasn’t done “right”. It’s not my choice, I don’t like it, I don’t want it, but it’s there and I can’t change it. I can only control what goes on to ensure feeling that way doesn’t happen – or happens as little as possible. It’s not worth the consequence if it does.
What really needs to change is the pain. Having the chronic pain has taken away my ability to do what I need to do to be OK. I am lucky that about 90% of the time the people who help me go out of their way to ensure things are done “right” for me, out of kindness and understanding. The other 10% of the time unfortunately leads to extreme breakdowns, or “meltdowns”, as my brain is unable to somehow distinguish that despite it not being right it’s not something to panic about. The result is a terrifying mental breakdown and blackout created by an extreme panic attack that execrates into a “meltdown”. During it I am not really aware of what’s going on, I just want the panic to stop. It’s exhausting and traumatic, and I’m quite willing to do what it takes to ensure they don’t happen. Most kids get diagnosed young and spend their lives learning how to deal with what’s going. I grew up in the back-end of north Wales and the best my mother got for my strange behaviour was, “she’ll grow out of it”, followed by mixed psychiatric diagnoses. The one that stuck was Depression. So I got treatment for depression… and, strangely enough – who’d have thought – that didn’t work. Nothing worked. Now I know that doing the little things I’ve always done to keep my mind tranquil and “happy” is what is required, and I do them. When they’re done, I manage. When they’re not… well, things don’t go so well and I end up back in that hell I hate so much.
What this ridiculous amount of pain has done is taken away my ability to cope. I spent my whole life learning techniques on how to deal with things that fall out of these strict parameters I built for myself. The pain sears every cell in my brain and takes away my ability to think, my ability to remember how I’m supposed to manage things if they go wrong. The pain causes stress and suffering, flaring (for want of a better term) the other thing that I have, and rendering me in that state of lost confusion, terror and panic. I need to do things myself, in my own way, to manage – taking that ability away is a living nightmare.
The Pregabalin has brought some of the pain under a little control, but the other side is the side effects screw with my head anyway. I’m walking a tightrope I keep falling off. I’m walking it alone. I had (stupidly) assume I would have some kind of professional help, but I don’t. Certainly not on the pain-side. There, I’m left to my own devices, having had nine whole months to deal with all this until my next (second) pain clinic appointment, the pain continuously getting worse. As much as the Pregabalin masks, it doesn’t mask the fact it’s getting worse and I can do less and less.
I apparently actually have two crappy conditions that contraindicate each other. Both are crappy and both are rubbing each other the wrong way. One just aggravates the other, and the meds just gets in there and makes everything even worse when it’s not actually doing its job and helping.
There should be help, but there isn’t. The NHS pain clinic here is overburdened, and ergo useless. To have almost an entire year between appointment one and appointment two is mind-boggling, especially when ordering an MRI right away, eight months before you’re even going to see the person about it… and by then it’s no longer relevant. In the meantime, I continue to get worse. Also, in an ironic twist, I now have that pain everywhere except in one of my fingers – which is now actually going almost completely numb. It’s the only place I can’t really feel pain… or much of anything, really. Actually, it just feels weird. That’s the last thing I expected to experience with all this.