I have a fairly busy week coming up. There are things in my diary that I’ve agreed to do that involve other people and are therefore “fixed” and would cause stress to me and others to cancel or change. There are also jobs that I really do need to do this week because not doing them would cause consequences (paying bills, dealing with various messages, making decisions about what to commit to over the next few months so other folk can plan, and that sort of thing). So I’m a bit stressed, and a bit anxious about how I’m going to cope with it all.
Part of what has happened over the last few weeks is that my state of “wellness” has shifted slightly. I’m far from “well” or able to live anything approaching what might be thought of as a “normal” life, but I’m no longer so ill that it’s obvious my life can only consist of getting out of bed, staring at the telly for a few hours, and then going back to bed again, which was how it was a few months ago. I can now manage to leave the flat on my own from time to time, even though it exhausts me, and, consequently, I’m doing rather more than I have been for many months.
But this increase in activity comes at a price. Each time I increase what I’m doing, a bit of functionality drops off somewhere else or I end up, on the days I’m not out in the world, back to being so ill that I can barely get out of bed. I managed to get to the conference the other week, and then to write it up as fully as I could, but the result was that I then spent two full days barely able to do anything and retreated back under my blanket on the sofa, stimming almost constantly, and not really managing to eat properly. You might have noticed that, as I’ve been doing more I’ve been blogging less. I only have so much energy and cannot use it everywhere at once.
And so I need to budget my energy. If I’m going to have enough energy to do the things I want to do in life (or, at least, as many of them as possible – I’d really have liked a full-time job and a family and to have been able to have a hobby or so on top of that, but I’m realistic to know that, for me, those things simply aren’t possible), then I’m going to have to save my energy rather carefully and work out what things drain my energy and what things give me energy, and how I can balance the two.
Which is, of course, why, stupidly, I’m up and out of bed before 10 in the morning this morning, too much in my head to go back to sleep, and now sitting at the computer writing a blog post about it!!!
The irony is not lost on me that I’ve woken up this morning feeling not too bad and am struggling to rest in the way that I know I should be doing if I’m to get through the rest of the week without falling apart. I’m just hoping that I can get the important jobs like bill paying done today so that at least I can allow myself to crash out later in the week if I need to, and I can spend all available energy dealing with the inevitable anxiety that seeing people (some of them new) and going to places (at least one of them unfamiliar) later in the week will inevitably cause.
It’s also particularly difficult to budget my energy at the moment because I don’t actually know how much energy I have to start with. In terms of spoon theory, I’m currently being given a number of spoons at the start of each day but I don’t know how many there are (I’m sure others with variable conditions will relate strongly to this feeling). In terms of monetary budgeting, it’s like working with a bank account without a balance available – I might have enough in there to go on a spending spree and buy whatever I like today, or I might go out and try to buy essential food and not have enough to pay for it. I simply don’t know, so it all feels like a bit of a guessing game right now and all I can do is keep trying to find out where my limits are.
What I do now know is that the only way to manage these energy levels is to let them settle as I stabilise after burnout, to work out just how much functionality I have in what areas, and then to start to look at how I can optimise life in general to be as good as it can be. I’m still accepting that it’s never going to be the sort of life I anticipated it would be when I was in my late teens and early twenties, nor the life that many other people expected me to have at that time. I’m still trying to figure out what I can do and get to a point where there is some sort of stability in my life. Currently, it all feels rather unknown and rather challenging and rather uncertain.
I could, of course, decline the offers to meet people, to play music, and to go out to dinner. I could give up the idea of ever running in big races. I could abandon plans to continue studying and learning. And I could decide to spend the rest of my life watching daytime TV, scrolling through social media, and playing with the animals. It became evident years ago that I can’t hold down a life-sustaining job for any length of time and I am not able to live independently. It also became apparent some years ago that having a family wasn’t going to be in my list of options either.
However, I’m interested enough in things that I don’t want to abandon all my goals and I do want to get back out into the world as much as I can. But, unlike in the past, I now have knowledge that makes me experience almost everything in life very very differently. I feel like I almost went into hibernation back in September 2016, and I’ve spent months, mainly hidden away in the flat, exploring my real identity, finding autistic communities online, learning the language of the autistic world, discovering things about my past, learning to listen to my body, having hundreds of “lightbulb moments” where I suddenly realise that there’s something ELSE I have always done because I’m autistic, and also allowing myself time and space to come to terms with what has happened and to recover from the huge burnout that had been building for some time.
But getting back out into the world uses energy. It uses energy in unexpected ways. Every time somebody asks me the question “What do you do?” it saps my energy levels massively because I have no simple answer and have not yet developed a reliable script. Every time people expect me to have “normal” social skills, or to chat in a group, or to be able to process the sheer amount of speech in the world, I get exhausted. Every time I have to explain because I’m meeting people who don’t know me online and don’t read my blog, it’s knackering. Every time I hear someone using person first language or functioning labels and so on I want to scream at them, I want to make them understand, but that all uses energy – things that are taken for granted in autistic communities online are totally foreign to most people in the outside world and, as is so often the case, the only way to deal with it is self-advocacy (ironically, I have a communication disability but in order to get my needs met in the outside world I have to be able to communicate effectively in a way that is exhausting and difficult to me)!!!
None of this surprises me, of course. Some of it I’ve known for years, and some of it is very easy to deduce when I think back to a year ago when I’d never heard of “burnout”, “stimming”, “inertia” and so on (I promise I’ll write proper blog posts explaining terminology at some point – it’s something I really want to do, but I can only process all these things at a certain pace and I can’t do everything at once). I know that there’s no reason why most people would have the faintest clue of what it’s like to experience the world as I do (and, of course, it turns out that I don’t know what it’s like to experience the world as they do either) and I’m now having to work out the interface between me, now unmasked, totally public and “out” and determined to be as authentically autistic as possible, and the world outside that won’t always totally understand me.
And it all uses energy. Lots of energy. And I don’t know whether I even have that much energy much of the time. But, ten months after discovering it was very likely I was autistic, six months after the low point of the aftermath of the first assessment going so badly wrong, and nearly four months after diagnosis, I’m starting to gather just enough energy together to do a few “normal” things out in the world. And since I’m no longer masking, or pretending, I’m hoping that I’ll gain quite a lot of energy from that – enough to compensate for the energy I’ll use doing all the necessary explaining.
So energy budgeting is very much something I’m thinking about at the moment. I’m starting to gather resources, starting to think about how I could make a system that will work for me (much like my old “mood diary” did so effectively in managing my bipolar disorder) in monitoring things, and what some of my goals for the future are going to be. Since I now know I have quite substantial limitations on what I can do because my neurodivergent brain needs so much energy to process “ordinary” things, I’m going to have to choose my goals and activities quite carefully!
This still feels like very very early days. There is still a long way to go. But it’s a start!