Fair warning, this is mostly a big ol’ whine.
Being a human is hard. There is a lot of stuff to keep up with. Keeping a body alive: fed, clothed, bathed, sheltered. Keeping said shelter in livable condition. Earning enough income to afford the shelter also hinges on maintaining all of those other basic human needs.
I struggle with it a lot. I try to do one thing, and it feels like all the other things fall to the wayside. If I have to go to work, I don’t have enough energy left to do anything else that day, and potentially a few days after if I’m in an illness flare. If I’m not at work, I don’t have enough structure or external accountability to keep me on task. I succumb to the dreaded inertia, full of intention but lacking in the go factor.
This summer, I’m giving myself a bit of a break between school semesters, so I’m only working two days a week. My health has been relatively stable-ish recently, but I took on a lot in the last semester and was starting to feel burnt out and like my health could start to crash if I didn’t give myself some time to recuperate. I’m in a privileged position right now where I will be returning to school and can access student loans to cover the cost of living. A wonderful position of not needing to be immediately concerned about finances while I put myself into further debt that can be a future me problem. At least in Canada the government helps out with interest if I’m still not earning enough after school to pay it back.
My plan was to use the summer to rest, try to get my life back in order, and start building some healthy habits to carry with me when I go back to school. I want to start cooking more and eating healthier, and I want to get back into my prescribed exercise routine (does it count as “back” if I only ever managed it for one month?). I also wanted to finally catch up on the chores I’ve been neglecting for months… cleaning my living room, bathroom, and bedroom, washing my sheets, vacuuming the house, mowing the lawn…
So far, it doesn’t feel like it’s going so well.
I’ve been discount hopping between a few meal kit delivery services, which have definitely been a big help (I am kind of thinking of giving these their own review posts if I ever get around to it), but I am still struggling to keep up with them. They almost always take me at least twice as long as the recipe suggests. A few of the meals have gone bad before I ever got around to cooking them, and I often don’t get to them all before the next box arrives.
My house is still a mess. I cleaned part of my bedroom in a panic one day, just enough to have an appropriate looking area for a Zoom call. I’ve cleaned areas of the living room, but they end up dirty again before I finish cleaning the whole thing and then I feel like I’m starting at square one again. I vacuumed half of the floor in there once too. I cleaned my bathtub at one point, cause it had gotten too gross to have a bath, and wiped down the sink. The rest of the bathroom is still an embarrassment, and frankly, feels so gross I don’t even like going in there.
The lawn… has gone to seed.
The exercise front is the one thing that has been going a little better, maybe, I think. I’ve given myself a goal of doing some form of exercise every day when my body can tolerate it. Usually that means taking my dog for a longer walk, or spending even just 5 minutes on my rowing machine. It’s hard to know when to push myself with it though. It’s hard to know if I’m feeling lethargic because of inertia, or if it’s actually fatigue and pushing my body might send me into a crash. I do something most days when I feel I have the energy, but I find myself skipping it a lot when I’m not so sure. On the one hand it’s important to listen to my body, but on the other hand I’m not sure when to trust my body. It’s frustrating because I want to build more stamina to feel better and be able to do more, but I’m not sure where the tipping point is to making things worse. I am at least thinking about it every day, and have built cues into my life to motivate myself to do it when I’m feeling up for it, so that is one thing that feels like a step in the right direction.
So here I am, 2/3 of the way through July, which means I’m almost exactly halfway through my summer break, and I don’t feel like I’ve got much to show for it. It’s frustrating. I feel like if I can’t even do these daily living tasks when I’ve hardly got anything else going on, how am I ever supposed to do them when I’m in school or working?
To me, it feels clear that I need support with many of these tasks. It takes up a lot of mental and physical energy for me to try and do them. There are strategies I can and do try: set a timer for 10 minutes and just start, “junebugging”, meal planning, online grocery shopping, chaining activities so one cues the next, and I’m sure plenty of others that I’ve either forgotten or never heard of. It’s still a struggle though, and uses up a lot of my energy that I feel could be better used elsewhere, especially if I’m working or in school. My energy is going to be more focused on attending class, and completing homework rather than washing my sheets or cleaning the toilet. A dirty toilet isn’t going to change my life in the grand scheme of things, but missed classes or late assignment definitely can.
The problem is that I don’t know where or how to get support for these daily living tasks. I’m disabled, but not enough for anyone to really care. As a “level 1” autistic with ADHD and a few chronic illnesses, it seems there aren’t really a lot of resources out there. If I’m not 100% disabled, 80% of the time, then the Government thinks I should be able to manage on my own. According to the DSM, ASD level 1 is “requiring support”, but in application, that seems to only be relevant until you hit age 18, at which point you are now expected to be a fully independent adult.
It’s difficult because I have my own interests, goals, and educational/career path. I want to be able to pursue these, and have success. I know I can do these things, but If I want to get support with daily living, the only place I know where to get that is from my parents. Living with my parents means I can’t live in the city I want to, or attend the school I need to study in my field. It also comes with the guilt of feeling like you are a burden, especially as they get older and start to need more support themselves. I can’t afford to hire someone to help with cooking and cleaning, and I also can’t afford to order food all the time. So instead, my life becomes a crapshoot of constantly having things fall to the wayside, and feeling constantly overwhelmed.
I recently participated in a survey from the Canadian Academy of Health Sciences “Assessment on Autism”. They asked a lot of good questions about living with autism, gaps in services, areas of need, etc. They had an engagement hub for sharing ideas, and I know I’m not alone in feeling like I am in a position where I am disabled enough to need help, but not disabled enough to receive it. There were lots of folks on there addressing similar concerns about how we cannot access any funding or support, yet we also struggle to maintain work and daily care and live in constant overwhelm and burnout. It’s near impossible to even get a diagnosis as an adult without paying thousands of dollars privately for an assessment with a psychologist, as there are only a few psychiatrists who will even see adults.
I’m hopeful that someday the feedback collected from that survey will lead to change in Canada. In the mean time, I continue to be frustrated, and stressed about how to manage on my own. Policy changes take a long time, and there is a long way to go. Maybe one day before then I will figure out how to get the support I need myself, or maybe I will finally reach that elusive, magical threshold the government thinks I was supposed to have crossed at 18 where my support needs no longer exist.