kashiichan’s Reviews > All Tangled Up in Autism and Chronic Illness: A guide to navigating multiple conditions > Status Update
kashiichan
is on page 130 of 272
"…activity I can do doesn't remain consistent every day. There's always so much that needs doing, and my urge to Do Things when I have energy and am in less pain gets amplified by my guilt about being unable to do much most of the time, whether to contribute to the household or socialise with others. I still have a lot to work on in terms of learning to pace myself better, especially regarding listening to my body…"
— Jan 24, 2026 08:33AM
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kashiichan’s Previous Updates
kashiichan
is on page 130 of 272
"…and voicing and asserting my boundaries both to others and myself. / From many, many experiences, I have learnt that relentlessly pushing on my better days to make up for the worse ones will, without question, lead to another PEM crash, and many more worse days. It is much more sustainable—no, is ONLY sustainable to pace myself." — Dan
— Jan 24, 2026 08:33AM
kashiichan
is on page 130 of 272
"I experience post-exertional malaise, known as PEM. If don't pace myself, my body WILL protest by crashing hard, so I suppose you could say pacing is effective—in the sense that if I don't do it, I can't continue and am forced to press pause for several days! I've found it inevitable that my physical and cognitive condition will crash and burn when I overdo it. It's hard not to overdo it because the amount of…"
— Jan 24, 2026 08:32AM
kashiichan
is on page 129 of 272
"…with four meetings in it, I'll have a very slow morning. Or if I have a doctor's appointment in the morning, and teaching in the evening, then I'll plan to just read my book in between." — Emily
— Jan 24, 2026 08:28AM
kashiichan
is on page 129 of 272
"I don't consciously use pacing, or call it that, but I have a dry erase board in my house that has all the things for the day on it, so I can see ahead of time what kind of day I'm about to have, and I'll make sure I take breaks accordingly. Like—if it's a day…"
— Jan 24, 2026 08:28AM
kashiichan
is on page 89 of 272
"Sometimes I feel like I am my own caretaker. Like — my body has all these needs and my brain is the one making sure it's safe and healthy and happy. I'm really good at designing systems and optimising things, and I put that talent towards taking care of my body. It helps me to think this way because I can be gentler with myself." — Emily
— Jan 24, 2026 08:14AM
kashiichan
is on page 87 of 272
"My walking stick, as well as providing me with more stability when walking, also helps with my proprioception; having something outside of my body that I can hold, marking where I am in an environment is really useful." — Amber
— Jan 24, 2026 08:10AM
kashiichan
is on page 52 of 272
"…and was designed for patients with neurological disorders such as dementia, so if you can, adapt it or make your own version! Pick questions it uses that work for you; add questions that would help you if you were unable to verbally communicate your needs — because that is what so much of healthcare relies on." — Chey
— Jan 02, 2026 12:31AM
kashiichan
is on page 52 of 272
"Most professionals are very good at their allocated ‘thing’ [speciality] and then know a little about everything else in order to provisionally test and refer. I have seen poor understanding of a condition, such as autism, lead to fractious communication and poor outcomes for both staff and patient. / My advice: have a ‘This Is Me’ document, or similar, prepared to take with you. The document is free to download…"
— Jan 02, 2026 12:31AM
kashiichan
is on page 37 of 272
"…medications before you find the one that works. This is not an unusual process as everyone is different. / For chronic pain, you may find that there are few medications that completely get rid of the pain. It is more likely that it will get rid of some level of your everyday pain or dull it down, with you still experiencing ‘breakthrough’ pain."
— Jan 02, 2026 12:27AM
kashiichan
is on page 37 of 272
"…you only need to focus on the actions instead of worrying what you need to do next. / You should lie down or get comfortable before checking in or each part of your body from head to toes. When thinking about each part of you, you should try and notice if there is any pain, discomfort or ache. You might not know why, or exactly what it feels like, but noticing it is a good first step. It might take a few…"
— Jan 02, 2026 12:26AM
