The Status Quo

Most things have stayed the same in the 12+ months since I last wrote about my life. I’m still “plodding along“, as I always say. It’s the best way of describing my approach to life—taking one day at a time and not considering anything beyond that.

I continue to cycle between states fairly regularly without an obvious trigger or pattern. There’ll be a few weeks where I can’t get out of bed, causing myself harm in various ways, basically self-destructing. That’s followed by a few weeks where I can do minor household tasks, go for a walk, text a friend, etc. Then, it repeats again. There’s no mania, just a fast and unpredictable rotation between bad and worse.

I’m currently experiencing a “bad” state—which means I’m not in the “worse” state, so I can open up about it. I think I’ve been in this mode for a few weeks now, with just a few instances where I’ve run out of spoons and crashed in bed, slurring like a drunk because I don’t have the physical energy to string a sentence together. Today, I’ve managed to vacuum a room in the house, walk to the postbox and put a wash on—all whilst thinking about my death, how my parents might feel at my funeral, what Craig and the dogs would do after I’m gone, and whether they’d be better off for it. A peculiar sense of anguish hides behind my fake smile as I go about my day, like a psychological oxymoron. It’s the only subject always on my mind, and it’s surreal when my behaviours contradict my thoughts entirely.

I’ve been making some positive changes while feeling motivated to do so. Things like pushing my shoulders back and standing more confidently when walking. It’s a constant battle when my default stance since childhood has been holding my body to obscure my oversized rib cage, which has negatively affected my posture. I’ve also decided to cut out as much sugar as I reasonably can, which is tough when sweets and chocolate are the only reliable source of pleasure in my life. Craig accidentally encouraged my efforts with this by taking a photo of the dogs, where my side profile was visible in the background. I obviously never get to see my side profile in the mirror. I don’t allow people to take my photo either, so this image shocked me and made me feel repulsive. I wanted to cause serious harm to myself just by seeing my photograph. Even the shape of my head makes me want to hide away from the public. There’s only so much I can do about it, but if I can succeed with these two positive changes, it might take the edge off my self-loathing.

There have been a few social events recently where I’ve felt well enough to tag along with Craig. I love the people in my life—they’re all fantastic—but I feel mentally and physically drained after these events. Spoon theory is the best way to explain it; I need to sleep and not be disturbed until I’ve replenished enough spoons, but I rarely get the freedom and opportunity to do so correctly. I also have to deal with rumination caused by incidents at these events, which you can guarantee will plague me for weeks afterwards. It’s usually over something I’ve said that has sounded differently to the recipient than it did as a well-intentioned thought in my head. I really beat myself up about these incidents because I hate upsetting people, or worse, thinking I’ve upset them and not being able to seek closure for it. 

I still have no plan or hope for the future. I have wholly accepted that I’m not here for me anymore. I’m here so my parents’ retirement isn’t dominated by grief for their dead child. I’m here as the only person in the world who understands Craig’s brain and the only person who can nudge him in the right direction regarding his health and happiness. I feel like I’ve exhausted every avenue in trying to get better. The NHS has completely abandoned me.

Despite preferring being alone more often than not, in my darkest moments, I crave somebody to help with my pain. It’s an overwhelming sense of loneliness, confused by the fact I am often surrounded by loved ones at the time. I can’t carry the guilt of hurting my partner, parents, or friends by saying things that may break them, too. And by reclusing over the years, I haven’t earned the social credits to demand people’s time. So it’s just me and the overwhelming feeling of drowning in the darkness.

I feel intense guilt over the things expected of me that I know I’m not well enough to do and probably never will be. One example is that my grandparents want me to visit them overseas. I’d love to be able to do that for them, but I know my limits better than anyone—pushing beyond my limits would be disastrous. If they were twenty minutes down the road, many of the barriers would be removed, but here, I would have no way to replenish my spoons, and as much as I love them, the whole trip would quickly take its toll. I can’t explain this to them, mainly because we’ve never been close due to the distance, but they wouldn’t understand. They must think I don’t care about them, which hurts so much, especially when the clock is sadly ticking and tomorrow isn’t guaranteed. I don’t know how to explain these very private and complicated things to them because, in my experience, the basic explanation often leads to misunderstandings and judgements like “But you seem fine!”.

These days, I’m less comfortable with telling people that I am diagnosed as autistic. I feel like autism awareness may have gone too far in the wrong direction, coupled with the rise of self-diagnosis (which I fully understand the reasons behind). It makes your average Joe think that autism spectrum disorder is a diagnosis handed out like sweets. I think people are too quick to judge because of this, often assuming you are over-medicalising completely natural traits or are following an online trend where people appear to make autism their entire personality and identity, where it can excuse any bad behaviour. I don’t want people to think that of me, even though I know that’s not the case and can fight back against those unfair arguments. So, my diagnosis is now just a private medical thing—it helps me understand why my whole life is the way it is and helps me understand my difficulties—but a random person I pass in the street doesn’t need to know about it.

I haven’t been enjoying any of my hobbies recently. Usually, I am up for rewatching a comfort film or TV show, working on a tedious database, or drawing a floor plan. Now, however, I can only devote up to ten minutes of my attention to anything I used to love. It’s distressing when you struggle to find joy in life, and your mechanisms to boost yourself don’t have any impact.

I still feel like there’s something else wrong with my physical health. I can never tell whether it’s related to everything else. Sometimes, I have to do the test to rule it out as anxiety. If I don’t feel the physical symptom when I forget to think about it, it’s probably a physical symptom of anxiety. That said, I’m still constantly tired, feel weakness and pain all over, and keep falling asleep all the time. I guess that’s all linked to my fibromyalgia diagnosis. It’s also coming up to summer when the unbearable heat puts me in a bad mood every day and gives me a permanent headache. Oh, joy.

Eh, yeah, so there’s not much else to talk about. Same old shit, different day. Till next time! If there is one.