The undamped pendulum mentioned in Uncomfortable continues to swing. My life continues to feel like it has some way to go before it settles into whatever my new “normal” becomes.
I don’t imagine, for one moment, that I shall ever achieve the stability that many people seem to in their lives – I’m just not built that way, and I know that monitoring my mood and my functioning abilities and so on will probably always be a part of my life. I know that my abilities and skills are very uneven and that they fluctuate significantly from day to day – yesterday it took me 3 hours to make a cup of tea, but this morning it was less than an hour. And, when I look back through my life, these things have always been the case.
But I do believe that things will eventually settle into something a little less crazy. I’m still only 9 months out from the very first suggestions that I might be autistic and only 11 weeks out from my diagnosis. These are early days, and things I have read by others suggest that life will calm down somewhat over the next year or so.
As I start to recover a little from burnout I’m also pushing myself out into the world a bit more. Strictly speaking I don’t NEED to push myself quite as much as I do (people say to me that I should take time, rest, and so on), but I am keen to get back to things and to do as much as I can (simply because I’m generally interested in stuff I think). The result of the pushing when out is that I’m regressing slightly at home – returning to the simpler comfort food more often, spending more time stimming, losing verbal functionality a bit more often, and so on. I’m starting to work on observing the patterns and looking at ways of monitoring them.
And so, each time I increase my activity, or push myself, or whatever, the oscillations get bigger, and then I need to stop and allow things to settle a bit. I find myself switching, every few days between two basic states – one in which I’m really negative and struggling and finding life tough, and the other in which I’m actually quite positive and optimistic and keen to make plans for the future.
So, during the negative times I end up with these sorts of feelings:
1. I want to hide under the duvet, away from the world, safe underneath a blanket, and just stay indoors in the dark for ever.
2. I do not want to eat, drink, or, sometimes even move. I am anxious and distracted and every tiny thing feels like a huge huge effort.
3. I am hypersensitive to things that I read, and I worry that I’m getting things wrong socially, even online. I constantly find that people don’t react to things the way I expect them to and I feel like my judgement is off somehow.
4. I struggle even to post on this blog or on my facebook wall and don’t feel that I have the right to be around or to even breathe the air. I’m frightened of the whole thing, nervous to post blog links up in case people hate them and don’t want to read them, fearful that I’ve upset people when the number of page likes goes down, and so on.
5. I feel like an alien everywhere and like a total beginner, even within autistic communities such as on social media and the blogging world. It’s like everyone else is somehow a “grown-up” and I’m standing in the corner at the party trying to work out what to do.
6. I feel huge fatigue at the whole “autism thing”. I look at the pile of books and scroll through my feed and I wonder what happened (I’d hardly even heard of any of this a year ago). I feel worn out by the last 9 months, the constant research, the incessant discovery, and I just want to do something different.
7. I sometimes feel totally freaked out by the whole thing. Everything has happened so fast. Suddenly my life was upended and I’m autistic and what on Earth happened there and I don’t know who I am any more, and I just want life to go back to normal and stop throwing weird shit at me.
8. I feel as if it will never get better and that if life is going to be like this for ever I can see very little point continuing with it. I feel useless and believe that I will never be able to contribute anything of real value to society.
And during the positive times I end up with THESE sorts of feelings:
1. I want to be out in the world again, back in my running shoes, back playing in orchestras, going for coffee, seeing people, and so on.
2. I’m even starting to fancy particular foods again on the better days and I can manage to eat a little more and a little more sensibly. I can do laundry and a bit of admin work.
3. I’m better able to respond with humour and more capable of brushing off the difficult stuff using brainpower. I put a more positive interpretation on things that are said and am learning to weed out the “advice” that I now know is not helpful for me. I cope better when the response is not what I was expecting because I know that’s part of my social imagination difficulties and I can rationalise it.
4. I will happily chat away on social media, share blog posts, and even write more posts with a certain level of confidence. If fewer people like the page then it’s no big deal, and if people don’t like me posting links to blog posts then I’m not really worried – folk have a right to choose what they look at or otherwise.
5. I feel that I do have some experience and knowledge about being autistic that I can contribute to the discussions, and when I feel like an outsider I’m perfectly comfortable with that – I’ve never needed a “tribe” before and I don’t really need one now. I can just be me, whatever that turns out to be.
6. I still feel that there is so much to learn about autism and being autistic. There are more books to read, more things to learn, and I have a huge list of things to research and blog about and discover. I’m even diagnosed now and can do this at my pace, and I might even find an area that interests me enough to form part of my future.
7. I feel so much more “at peace” with myself than I’ve ever felt. Discovering that I’m autistic might be new and unfamiliar and a bit crazy, but I know it’s right and it explains so much and I feel so much happier already and am treating myself more gently and appropriately and there’s no way I could go back to the old life, ever, because this new one is so much more ME and I find myself thinking how wonderful it is to have discovered it at last and I want to go and shout it from the rooftops!
8. I feel like there is hope for a much better future. I make plans for things I’d like to do in the next five years and I start to think about what I might like to do with the rest of my life. I feel like I might even be able to do something useful at some point and think about what that might be.
And so, these two states describe my life currently. I oscillate between them approximately every 2-3 days. On the good days I catch up with admin, write blog posts, try to do a little work, maybe play my viola, get some exercise, and sort the house out a little. On the bad days I just try to get through, to survive, and to still be alive at bedtime.
There’s some connection between the amount I push myself and make myself do things and go out into the world and the two states above – sometimes I deliberately maintain a positive “act” of sorts (maybe I am still masking somewhat) in order to do something I want to do or have planned and don’t want to cancel, and the result can be a tumble into the negative state. I’ve also noticed that the negative states often end with me becoming nonverbal, as though they’re caused by my head needing some sort of “reboot” and also that meltdowns are more likely in that state, particularly when I’ve pushed myself out and maintained the “act” described above.
And so the cycle continues, and I expect it will for some time to come as my brain continues to process things and I continue to work out how to deal with such wildly fluctuating moods and energy levels.
I guess it keeps life interesting…