October

October has been a tricky month. My blogging abilities finally ran out. My spoon rations finally fell below the numbers required to maintain this blog. I was forced to take a break and to deal with life and there was no energy left for blogging.

I am still recovering from what has been a tough few months. My head is still only sporadically clear enough to achieve very much of anything. Depression is threatening. I am trying to seek help, which is proving exhausting, triggering, and difficult. I have finally reached the point where my head needs a pause to assimilate all that I have learnt about autism in the last year and a bit. Processing time. A reboot.

I feel I’m failing here and should be able to hold it together better – this is probably a hang up from decades of being told I can do anything and I’m strong and capable. The truth is that I am not, and I currently don’t have the energy to do more than crawl out of bed some days. I look at the blank days on the blog calendar but I am mostly powerless to fill them, or even to advertise old posts. It feels like negative achievement, like going backwards. My energy levels are very variable though. I need to focus on self care and getting through the days.

There is a great chaos in my mind of things that I want to discuss, things that I want to blog about, but I currently can’t. There have been successes (playing music and returning to running half marathon distance (slowly)), but these things use vast amounts of energy for me and I have not had adequate recovery time. I’ve also been in touch with family members, seen my mother, communicated with my father who is in the midst of chemotherapy, been out and about for coffee and shopping a bit more, and been trying sometimes to take pressure off my husband who is still working seven days a week. This all takes energy.

Going back to the mental health services to ask for help has proved triggering and difficult and I still don’t know where it will lead. I’m certain that in addition to being autistic I also have ADHD, but the process of obtaining a diagnosis is not going smoothly thus far. I still have no access to appropriate counselling or medication – the process of trying to get either is draining in itself.

Social media has not felt as safe and supportive as it sometimes does – I sent out a call for help on facebook and received some hurtful and gaslighting comments from people I counted as friends. One is now blocked, several I have filtered, some might remain so, some will not but will need explanation I’m not currently able to give. Over two weeks after a huge meltdown I am only just returning gently. The bruises I inflicted on myself that night are almost healed. I will sort things when I have the energy, but that is not now. I’m finding twitter almost impossible, the back and forth nature of it too much like “conversation”, which I find much harder than simply typing a paragraph. The short nature of tweets breaks up my thoughts and I can’t focus on threads and so on. I have, however, taken to Instagram – the visual nature of photographs is working better for me at the moment.

I am conscious that I still need to respond to comments here, some of them wonderful, thank you. There are many things to which I want to respond, but simply can’t yet. I will as soon as I’m able, I promise. I’m missing discussion on Chris Packham’s TV programme on autism because my brain won’t process what I want to say. I have so many thoughts, but I can’t currently form them into anything I can publish. I also had many and various thoughts about the “me too” hashtag on social media, thoughts and feelings that kept me from participating in the whole thing. And I’ve had times of serious gender dysphoria in the last couple of months that I’ve had to find ways of dealing with. There are so many complex issues swirling around in my head and I’m trying to sort them out as best I can.

I feel like I am missing the Zeitgeist somewhat. There are lots of posts going round about autistic hyperempaths, to which I can’t relate because empathy doesn’t come naturally to me and I spend a lot of my life working really hard to try to understand feelings (both my own and other people’s). I want to explore the ways in which I fit autistic stereotypes and the ways in which I don’t. But my brain won’t currently cooperate. There are so many things to write about, so many. So much to explain that I want to explain as fully as I can. And so much of it is triggering and difficult, and I fear conflict, which makes it even harder.

I need time. I need space. I need to organise my thoughts. I also need to organise my life – I have now landed us with a summons for non-payment of council tax, not even because I didn’t have the money to pay the month’s instalment, but because my executive functioning was so poor that I couldn’t make my head work to do the job. My spouse has also had to type e-mail responses for me to copy and paste and has had to complete student loan deferrals and so on because I have simply been mentally paralysed by such tasks.

There is much still to discuss. There are many things I want to blog about. I’m trying to make notes when I can. I’m trying to think of ways of explaining things to people. I’m trying to work out where things go from here.

But I’m also trying to hold some semblance of life together. Things are difficult right now and I don’t know when this difficulty will ease.

I will return when I can.

Accumulation

There are usually two reasons why I might not update this blog for several days. One is that I’m too busy, doing too much out in the world and am therefore spending all my energy interacting with people out in the world and all my time simply doing whatever it is and therefore don’t have enough energy or time left over to write a blog post. The other is that I am simply unable to write at all because I cannot translate the thoughts in my head into sufficiently coherent words because I have run out of energy completely and it is all I can do simply to survive and get through the day.

Both of those situations have been the case this past week, which is why I’ve been absent. After a couple of really busy music events the previous week (and yes, I did leave two clear days between each for recovery), I then went out to lunch on Saturday, went running on Sunday, out to lunch again on Monday, and then had to drive over to the vet on Tuesday to collect a rat who’d had a operation.

It turned out that, when added to the musical activities of the previous week with bare minimum recovery time and no “well days” in between for me to gain energy, four consecutive days out of the house was too much for me (in fairness, I didn’t plan four days, because I’d forgotten about collecting the rat, and even when I did remember, just a drive to the surgery didn’t seem like it would be too much – but it was).

And then, on top of all this activity out in the world with noise, and interaction, and so on, there were other things going on. Several incoming messages to deal with, things I wanted to say and comment on, friends who needed support in various ways, a bit of family stuff (father starting chemo), a birthday, anticipation of the upcoming weekend (which is now happening as I type), and my spoon rations were stretched to their absolute limit. And last thing on Tuesday evening the very last spoon of my spoon overdraft was used and I went from “coping” to “not coping”.

With hindsight, the signs were there. Saturday lunch was the last “proper meal” I managed to eat, and my food intake got increasingly erratic over the next few days. I started to feel exhausted again. I gave up commenting on facebook posts I’d wanted to because I couldn’t find the words. Sunday I got wiped out by going for a run and lost speech again. And once I got to Tuesday night I managed about one hour of sleep in total.

I haven’t felt up to writing a blog post, not even a “poem style” one since then. I’ve tried on several occasions. I’ve lain in bed with the phone, sat on the sofa with the iPad, and at one point turned on the computer and managed to type a title before feeling so awful I had to go and lie down again. But that has been it. Today is the first day I’ve really felt anything other than absolutely dreadful.

And I finally figured out, yesterday, I think, WHY that is. Even if I had been wrecked on Tuesday evening I should have been OK by Friday if I’m thinking of the “two days for recovery” rule, which I’ve been applying and which has, on the whole, been reasonably successful.

But what I hadn’t figured on was the cumulative effect of stacking up many events on top of each other. I hadn’t figured that the two days are just what’s needed for recovery from doing something, but that they’re not enough for proper recuperation. If doing something takes me into spoon overdraft, then two days can usually get me back to a balance of zero, but if I don’t take MORE time alone with minimum sensory input then I never get chance to accrue any savings. I’m living on credit the whole time.

And now I’m paying the price. I was supposed to be going to the Air Tattoo yesterday with my friend. I was not well enough to go, not by a very long way. I wasn’t even well enough to e-mail him to tell him I wasn’t well enough to go, so my husband had to do it for me. It was left that there might be a possibility of going to park and view nearby tomorrow, but, as I type this, I don’t think I’m going to be well enough for that either. I’m still struggling to eat. My sleep is still really disturbed. And my mood is not, shall we say, at the top of its game.

And my husband isn’t here to do the communicating for me either because he’s out for the next two days running the 100K ultramarathon that I am missing terribly and want to be doing too, but am not well enough. I’ve been dreading this weekend for a few weeks now, knowing what sort of weekend I wanted it to be, what I wanted to be doing, and what I wouldn’t be doing, because of stupid burnout and being not well enough to have done enough training or anything.

And it’s turned out that I’m not even well enough to go and watch aeroplanes either. I’ve run through, in my head, the potential scenarios for tomorrow, and I can’t imagine how I’ll cope. There will be people, there will be noise, there will be nowhere to hide, nowhere dark to go. It will be a long day that will use spoons fast. Even in past years, before I knew I was autistic and before this particular burnout, it’s taken me several days to feel well again after going to an airshow – I now understand why. My husband has made sandwiches and has left them in case I go and need them, but my head just can’t make it work right now. I’ve been trying to get out of the flat for the last day and a half in order to do a few jobs – I need to go to the bank, my phone has run out of credit, and so on, but even that feels too much for another few days. I need more time, more space, more recovery.

All this makes me sad. Things that I want to do, things that I love doing, I just can’t. It also makes me afraid, afraid that people will stop asking, that they’ll think it might be “too much” for me and that decisions about what I do will get taken out of my hands because people will think they’re protecting me by not inviting me to play music or have lunch or go running or go to airshows or whatever. And I’ll miss out on opportunities that I COULD have taken (my functioning abilities are so variable that I can often do something one day that I have not a hope of doing the next, and vice versa) and on things I enjoy. I also worry that they’ll stop being genuine with me, thinking that I won’t be able to cope with difficult stuff, and I’ll end up with a confused “half-reality” which I absolutely don’t want, even if I can’t always help with that particular thing at that particular time.

I have to learn this stuff for myself, and I have to discover just what abilities I’ve been left with following the burnout of the last year, just how far I can push before I break, and what I can do to mitigate against the effects of going out into the world and doing things. I have to learn how the cumulative use of energy stacks up and what I can do about it. Even realising, this week, the difference that “accumulation” of spoon debt makes to me, it has become obvious why I’ve struggled so badly to hold down even part-time jobs. Even if I can get through the first week, the damage to my energy levels stacks up so I’m incapable of doing the same in the second week, and I eventually fall apart. Looking back now, it’s easy to see the patterns. And in a strange way, being able to see those patterns and understand why I lost the jobs is at least satisfying and persuades me, just a little more, to stop blaming myself (as I have done for years) for my many failures in the workplace.

Before my husband headed off to go running around the countryside we were able to discuss some of this. He reminded me that it’s still less than a year since the huge discovery that I was autistic (which is possibly the most life-changing thing that will ever happen to me), and it’s still less than 5 months since my diagnosis, and that I’ve actually come a very very long way from where I was back in December. I’ve recently done things that I could hardly have dreamed of back then, so it really is progress overall.

However, progress takes work and energy and costs spoons. Even if the general direction is upwards, sometimes things will go downwards. While I continue to be the sort of person who wants to go out into the world and do things and to push myself to my limits (or, let’s be honest, to test the outer reaches of those limits and to keep pushing until I break, which is probably going to continue to happen quite a lot because living a “quiet life” is so counter to my personality that in its own way it’s even harder than doing the pushing because pulling back also takes a lot of effort), I will, inevitably, break from time to time.

Today, however, just doing what I really need to do will test my limits. I need to pay the council tax, I need to contact my friend about watching aeroplanes, and I need to eat. All of those feel like really really big tasks right now, but they’re what I’m aiming for. Anything else will be a bonus.