Last night I wrote the following in my journal:
‘Sometimes I still hate my limitations. I hate giving in to my need for rest – for my need to slow down and do less. Sometimes it feels like I have a huge list of things I want to do, start, accomplish – but instead of those things I’m doing all the mundane things and getting exhausted by it and then having no energy to be truly alive, creative, engaged, connected.’
And I do lament this. What happens is that every day I have to take an hour to shut out the world. If I don’t do this, I can’t manage the evening responsibilities of my household. I become overwhelmed, easily frustrated, angry. I yell and frighten and upset my kids. And over time, it builds up into something much worse – debilitating anxiety and panic attacks.
And it’s not just taking that hour out. I have to be very mindful of how I spend my time each day. I have learned that there are certain activities that are going to require more recovery time – things like being in a crowded shopping centre, or having an appointment with a doctor. And really, it’s still trial and error. There are times when I only realise after the fact that I took on too much. I don’t always have a choice. I don’t always get it right, and when I don’t, I have to do things to mitigate the stress I’ve been under.
But boy would I love to be able to do all the things I think I should be able to do in a day. Especially since the first things to go are often the things I want to do for myself – and while I do feel like the hour break is self-care, I put it in the same category as anything I would do for health. It’s like taking medicine. It’s a necessity, not a luxury. And it’s taken a very long time to accept that. And clearly, much like the SNRI medication I take, I would prefer not to need it. But I do.
When I am going about my day, I am still very immersed in doing for others. Some of it I am obligated to do, like caring for my children – but I go above and beyond for them. I like to do things for my husband too. And I still seem to equate my worth with my ability to accomplish things, which is a work in progress. But also, I get so much satisfaction (dopamine?) out of crossing things off of my list. And my list is long. And never-ending. So I always feel the pressure of doing more. I’m learning how to be more realistic and also to include more things for myself. But again, it’s a work in progress.
Age, stage, or something else?
I’m not sure if it’s an age thing, a stage of life thing (raising a preteen and a teenager), or what, but I just can’t do as much as I used to be able to do. I didn’t think I would be experiencing that or admitting that at 45 years old. But here I am. And as much as I am know the importance of having compassion for myself sometimes I really hate the limitations that I experience. Limitations that I don’t think I would have if I was a neurotypical person.
It’s funny – I re-read the previous paragraph and recognise that yes, while there could be age / stage components to it – the truth is that the thing that has come with age and the stage is the wisdom to know that I need to do less. And the knowledge that when I didn’t know I was neurodivergent, I didn’t impose those limits on myself because I was trying so fucking hard just to do all of the things that I thought I should be able to do. So technically I didn’t have those limitations back then.
But that didn’t come without consequences. Eventually, the façade would crack. Okay, it would more than crack. It would blow the fuck up (hello, meltdown!) or it would disintegrate (hello, shutdown!).
And then the judgements would come along. ‘Why can’t you do it all?’ ‘Everyone else can do all of these things without having massive emotional problems.’ And then there was the worries about being like this forever: ‘When are you going to stop doing this shit?’ ‘When are you going to grow up?’ ‘You’re just a crazy person and you always will be.’
Usually, after I had a massive emotional outburst or shutdown, I would be able to get on with things. The people around me didn’t usually know how to help or what to do. But I would take on all of the blame for anything that happened, and apologise, and either burn a bridge with someone, causing the end of a relationship – or I would be forgiven for my bad behaviour and do all I could to be perfect again. But then things would build up all over again until I got to the point where I would have the next outburst or shutdown. And the cycle would repeat again.
Often I have wondered why, years ago, I used to be able to do so much in a day, and now I just can’t.
When I was a young adult, I was going to University full time, and working a retail job as well. I was at times living with my sister, so there was a commute to school, classes to attend, homework, housework, a job, and a boyfriend to juggle. At times I was also doing an unpaid internship in which I had a 90 minute drive each way.
I was excelling at school. But I am sure I was exhausted and I suppose that led to a lot of the volatility in my relationship with my then-boyfriend. And depression. Anxiety. Panic attacks. But I would have my breakdown, meltdown, and/or shutdown and then get back onto things. I was driven by perfection for sure. My identity was centred around being a great student, and accomplishing as much as I could. And really, I only had me to take care of.
I think that as a younger person, there is more access to energy. But I think I have also gotten very lost in comparing myself to other mothers. Bringing up kids in the peak of social media has certainly not helped. It didn’t exactly compute to me that what some people were showing on their social media life was limited to the best parts of their lives. The beautiful parts. The things that would make other people think ‘Wow, look at that supermom – everything comes so easily to her.’
I didn’t know how to colour my life with that kind of filter. Much like my writing here, I think often I have (over)shared ‘an unflinching look’ – the reality. And even if I kept quiet online, feeling like I didn’t want to complain too much – I was experiencing so much difficulty being a mother. I would wonder why it was so much harder for me to deal with the breastfeeding, the sleep deprivation, the constant needs of a baby. Yes, it’s a huge adjustment for every mother, but I now know that compounding the usual difficulties were my sensory challenges, as well as my history of anxiety and depression.
When I would participate in playgroups and I would express how challenging things were, I was often shrugged off. I think this was extra difficult for me due to cultural differences. In the Midwest in America, there is more of an attitude of empathy, or looking for ways to help. In Australia, it was more of that ‘she’ll be right’ attitude, often expressed as ‘Oh, yes, all kids do that’ which I think was their way to minimise my worry about things.
But I didn’t understand that at the time. So how I heard it was ‘All kids do that, and if you can’t handle it then there must be something wrong with you.’ I stopped talking about it, but didn’t stop searching for answers. Eventually I would learn that my family was not your (neuro)typical family so it wasn’t true that I was experiencing what all parents were going through. Yet while I did change some of those expectations I was still holding myself to NT standards.
In my estimation, I was failing. I couldn’t do all of the things that were seeming to come so naturally to other women. I couldn’t have a job, a child, run a household, be a good wife… And there certainly was no time for any self care.
When my daughter was three, my husband and I came to the conclusion that we needed to move to Melbourne. We had no family nearby, but part of what had driven the move was conflict with family, and by the time we moved I was already very depleted. Shortly before we moved, I had my first incident of Illness Anxiety Disorder, and I didn’t know what it was yet. In fact, it took a ridiculous number of visits to the doctor before someone flagged that what I was experiencing was anxiety and panic. My anxiety and panic had never looked like this before. I remembered how when I was younger, I would hear about women having ‘nervous breakdowns’ and I was pretty sure this is what they meant.
Suddenly I was in constant survival mode, and it was all I could do to take care of my toddler. I stopped working in the business I shared with my husband. I couldn’t do much. Eventually I got onto a naturopath that treated me for anxiety brought on from hormone imbalance. It’s a very long story, but in the end, I had to get a copper IUD removed before I had any significant recovery. So it was easy to come to the conclusion that it was all brought on by the IUD.
It took a long time to get to some semblance of feeling safe and capable. And during treatment, one thing that the naturopath helped me to do for the first time, was to see how important it was for me to take some ‘me time’. It was part of her prescription for me. And so I did this to a degree. And as soon as I was feeling better again, I was pregnant and started another cycle of overwhelm.
I’ve now been a mother for over fourteen years. And in that time, I feel like I’ve often either been holding things together by a thread, or I’ve been an absolute mess. And last year, I was still struggling which didn’t seem to make much sense to me because things were finally getting better. We had moved back to Australia, and after six months of living with my in-laws, we had gotten our own place. For the first time ever I would have both kids at school. My husband was doing a new kind of business that I didn’t need to help much with. We were not struggling financially like we were in America. I was finally going to be able to do more! I could think about what I wanted for myself.
And for a couple of months, I was really content. I got into a rhythm and a routine around the house. I began writing a book. And then I ‘hit a wall’ so to speak. I was not comfortable with feeling good. I was angry that I couldn’t just be okay with being okay. And entering into another cycle of anxiety eventually led to my autism and ADHD diagnoses.
A couple of months post-diagnosis, I had another massive anxiety and panic spiral – worse than ever before. I was stuck for a couple of weeks, and at times wanted to go to hospital but due to covid I wouldn’t go because I couldn’t be apart from my husband. So all I could do was wait for the SNRI to take effect.
When I started the medication, I was so sleepy. I didn’t have a choice but to fall asleep during the day. And I got in the habit of shutting out the world for a few hours every day. And when I acclimated to the medication, I continued to take an hour out of each day because I could see how beneficial it was.
And so here I am. Still wanting to do more. But taking the lesson on board that this is a medical necessity for me. And knowing that it benefits my whole family.
Yet that doesn’t mean that I like that this is the way it is. I still hold out hope that my capacity will increase as I work through my traumas and learn how to better mitigate my sensory overwhelm; or that my responsibilities will decrease as my children gain more independence.
I still struggle with the idea that I have creative and intellectual potential that is diminished by my ‘limitations’. But today, I put my writing near the top of the list. And that’s a win.