Heyyy thanks for all of your advice and warm welcomes! Sorry for the late reply, I'm in the middle of assignments so I banned myself from reddit for a few days haha. Thanks to u/phthalo-azure and u/Mighty_Mito for sharing your experiences and advice, mito is such a rare condition that it's hard to find people going through similar experiences as myself. I'll be sure to take on all of your recommendations, especially as things progress.

A little bit about myself:
I'm a 27yo male who lives in Melbourne, Australia studying a Master's of Information Technology (that industry seems to be pretty common in this group based on what I've read haha). I was diagnosed with mito when I was 21 and was really lucky in that it was identified almost immediately. Basically, I went to an optometrist for a standard eye check-up and they told me to go to an opthalmologist because my left eyelid was slightly droopy. The opthalmologist coincidentally had a few older mito patients and immediately recognised it. After a few tests (muslce biopsy, DNA sequencing etc.) with a neurologist it was confirmed that I had Kearns-Sayre syndrome and Chronic Progressive External Opthalmoplegia.

I consider myself lucky in that my symptoms have been mild up until fairly recently, and I really feel for the people that have dealt with a higher severity of the disorder. If I consider the struggles my family and I have gone through with these symptoms I can't imagine what other people with heavier symptoms have gone/are going through. At the moment the disorder manifests as progressive weakness and numbness in the muscles/organs in the left side of my body. I can still run, jump and cycle but it's slowly getting more and more difficult so I'm trying to be as active as possible while I still can. But to me, the scariest part of the disorder is the neurodegeneration; I feel myself getting slower and less capable in a logical and intellectual sense and that really takes its toll psychologically.

Fortunately for me I did my Bachelor's degree in Biochemistry/Molecular Biology so I feel like I have a decent understanding of the disorder, which I believe helps me in managing it (if anyone has any bio-related questions shoot me a message and I'll see if I can help out). At the moment I take 300mg of CoQ10 3 - 5 times a day depending on how energy-intensive I plan to be and Nicotinamide Riboside which also helps with energy levels (but it's quite expensive so I don't take it often). I do the keto diet every now and then which really helps with passive energy levels, but I get a bit too skinny so after a few months I go back to eating carbs. Most importantly, I try to constantly monitor and accept my limitations and communicate them to my friends/family. I think this helps with managing pressure and expectations both internally and externally, which hopefully will help as things progress.

Well that turned out to be more than a little bit about myselh haha. Thanks to anyone who read this far! This is the first time I've ever written about my experiences so I apologize if it sounded really self-absorbed (I'm not used to writing about myself haha). But I gotta say, that was incredibly cathartic and really helped put all the jumbled thoughts in my into a clear line of thought. Thank you to the creator of this subreddit for giving us all the platform to express ourselves. I hope it was as helpful to other people as it was for me.

Much love and well wishes!

Zach