Trial and error

Over the last few years, my ongoing goal has been to try to figure out what a sustainable, meaningful life would look like for me, and how and where I might fit in the world. When I say “fit in the world”, what I mean is more along the lines of finding the places and roles which are right for me, rather than changing myself to fit whichever place and role I’m in at the time. Learning about autism has helped with this immensely, as has spending three years working on various projects at my current uni, as the department I’m part of is pretty inclusive and accommodating.

So, what have I come up with? Currently, my only concrete answer is that there are no concrete answers. I’m constantly thinking, trying new ideas out, gathering data (literally – I have a tracker app to record my mood, anxiety levels, urges to self harm, energy levels, and so on, and it produces some lovely statistics), and refining. I’ve altered my schedule several times. My two very full days with early starts are Mondays and Wednesdays; I work from home on Tuesdays and Fridays to break up runs of days otherwise spent endlessly interacting with other people; and I only work evenings twice per week. This is a big difference to the early days of my self employment, when I had no real choice but to work to clients’ availability if I wanted my business to survive. I still feel a little guilty that I can’t accommodate the peculiarities of every potential client’s schedule, but equally, I wouldn’t be able to help any of them if I ended up too exhausted to work. Playing with my working patterns has helped me to realise that my current job is manageable, and even enjoyable, when I am not on the verge of burn out. Being autistic brings benefits and challenges to what I do, just as it does to every other area of my life – but that’s probably true of anyone’s neurotype/personality traits. So counselling currently remains in my long term plans, although I suspect I will try to move more towards training and consultancy than one-to-one work in the very long term.

On top of work are things I do out of choice. I am trying to upgrade my driving license to include manual cars, so I have driving lessons most Tuesdays, which I hate, but which will have useful long term benefits. I have started lifting some fairly-heavy-for-a-small-person weights once a week, because it’s fun and good for my bone density. I would go twice a week if I could, but I can’t, so I don’t. I’m leading a voluntary project with my Masters research supervisor, but I’m delegating most of the face-to-face work, like participant recruitment, to other volunteers. I’ve been applying for PhDs, and am 95% certain I will be starting one of them in September, if all the paperwork goes through okay. The problem is that any particular configuration of work and quality of life tasks might work beautifully one week, then be way too much the next. Usually it’s these optional tasks which tip me over the edge – but on the other hand, while they are not financially necessary, they are all important to my long term career, health, and general enjoyment of life. So when my mental health red flags start appearing, I often feel like I have to choose between scaling back on paid work, which I can’t really afford to do, or going back to basics and only doing paid work, which is a little soul destroying. Most weeks I strike a tentative balance between the two.

And then sometimes it all goes wrong, like it has done over the past two weeks while I’ve been ill. It was only a virus, and I escaped taking too much time off because the day I was most unwell was the day of All The Snow, so no one else could get into town either, clients included. That was a Wednesday, and I thought by the time things got back to normal on the Monday I would have had the weekend to recover. But no – I started Monday with the panicky inner monologue of “I can’t, I can’t, I can’t”, and it’s not calmed back down again yet, eleven days later. This has really messed up my lovely tracker graphs, because everything had been going in the right direction since about November, when I started my new medication, and now they’re all heading downhill again, damn it. I am not impressed.

The medication thing is complicated too. After I was diagnosed with endometriosis I started taking a small dose of amitriptyline for chronic pain caused by scar tissue on nerves, and it coincidentally helped a number of other things: my sensory sensitivities became manageable, I became less anxious and meltdown-prone, my IBS almost disappeared, and I started sleeping well. But amitriptyline is renown for causing brain fog, and on top of my general executive dysfunction this created some serious problems. So I took a previous psychiatrist’s recommendation up (they do occasionally have useful ideas 😉 ) and started taking reboxetine, an antidepressant which only seems to work for a weird minority as it acts on noradrenaline rather than serotonin. As anything serotonin-y seems to make me worse, this turned out to be a good call: reboxetine improved my mood, which was rubbish at the time, and my concentration, as it is also used for ADHD. But as it turns out, these two meds don’t get on with each other, and I got cardiac side effects, so I reduced my amitriptyline. Now, my concentration is much better, and I’m still sleeping okay, but my sensory sensitivities are out of control, I’m much more anxious, I’m having more meltdowns and my digestive system has returned to its previous disreputable state. This was a worthwhile trade-off to begin with, because my mood was better, but now my mood has crashed again as well – delicate flower I am, I am still only taking half the normal starting dose of reboxetine, which is clearly not enough to contend with the general state of me right now. I don’t want to take strings of medications, each designed the counteract the side effects of the other, I just want my brain, my heart, my digestive system, and my nervous system to all get along with each other. Is that really too much to ask?

Really, this continual process of trial and error, burn out and rebuild, has been going on since I was about 14, which is the first time I can remember deliberately trying to figure myself out in order to make life easier. Why did I always feel so bad? Why did I keep trying to restrict what I ate? What the hell was the self harm about? My first ever answer to those questions was that maybe “bad foods” like chocolate made me eat too much, which made me hate myself and want to restrict/self harm, and so the answer must be to not eat chocolate. As well as being a very eating disordered interpretation of events, this seems endearingly naive – but I was doing the best I could with the resources I had at the time, which consisted solely of my brain, because I didn’t have any help. I can forgive a scared 14 year old for that. Almost 20 years later, many things have changed, both internally and externally. I have had multiple therapists offer their interpretations and suggestions, I have accumulated a vast amount of knowledge about mental health, I know I’m autistic and understand what that means for me, and I am surrounded by people who ‘get it’ and support me. But sometimes, I still feel very alone.

I wish there were services designed to support the mental health and quality of life of autistic people in the UK – where I could see a doctor who knew which medications would help my sensory issues without making my heart act like it belonged to a hummingbird, have someone like an occupational therapist work with me on trying to optimise my schedule and responsibilities, get earlier warnings from support workers who knew me and could pick up on mood-related red flags before I’d noticed. But I don’t think those services exist for people who have straightforward mental health problems (if such things even exist), let alone anyone with an ounce of complexity. Maybe it comes down to this: I wish there was a safety net. Sometimes I feel like I’ve climbed far too high, and am hanging by my fingertips hyperventilating in terror. Sometimes I only look down to marvel at the view and the distance travelled. And it’s so hard to predict which of these will be my experience on any given day.


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