beesbuzz.biz
Fatigue and support thereof
Over the past year or so my fatigue has been getting significantly worse. It’s almost always brought about by post-exertional malaise, which is one of the keystone symptoms of ME/CFS, which has no known treatment, just mitigations _at best_. And the core mitigation is to not overexert oneself.
This presents a problem, as there are so many things I’d like to be doing, and even taking care of my basic day-to-day needs already puts me right up at my limit most of the time, and often pushes me over.
It has me thinking quite a lot about what I need to go on.
### Things that are helpful
I need to know that the things I’ve done have been worthwhile, and that there’s a reason to keep on doing the things I’m doing.
Things that would make a huge impact along those lines:
* Knowing that people are listening to my music, and sharing it with others
* Feeling appreciated for the things that I’ve done, and anticipation (but not demand) for what’s coming next
Having fatigue makes it difficult for me to do a lot of things, and I’m severely isolated.
Having friends who are willing to come over and spend time with me, and help me with household chores (cleaning especially), without judgement, would help substantially.
I also have so many projects that I’d like to be working on, and where having me be the sole person doing it would not be sustainable or successful. People who I can collaborate with, especially on software, would be great.
At some point I’d particularly like to get back into making comics, but drawing physically hurts me to do anymore. Having someone I can work with to at least finish Lewi (and, ideally, Unity) would be amazing.
But really, anything that tells me that what I’ve done has made an impact on them (especially positive impacts) would be amazing. Fanart and covers of my songs and such would be so incredibly precious to me.
And, of course, learning something _I can actually do_ that would help me with my fatigue and chronic pain. Not palliative care (I can already smoke weed all day and wallow in oblivion), but like, something that would actually make a measurable positive impact on my health and ability and which I can actually access without going into bankruptcy.
### Things that are less helpful
I’m not seeking financial support _per se_. I made plenty of money as a software engineer, and while my savings won’t last forever, I have enough to get by for a while. My reason for seeking disability is to gain access to helpful services that are gated by a disability determination (and where public funding drives the cost down).
Having people show appreciation by buying my music and games and such would be _nice_ but it doesn’t do nearly as much for me as contributions in other ways (especially things that help things to keep going, like code contributions and help with word-of-mouth sharing and so on).
Whenever I’m in a depression hole about how I’m not doing well and not able to do the things I’d like, the last thing I need is aphorisms about how okay it is that I’m not able to do things. That just makes me feel worse; at best it makes my works feel like they weren’t meaningful or worthwhile to begin with, or that the things that I’ve lost aren’t worth mourning.
And being told what I can or should do in any sort of minimizing language? Remember that the word “just” can do some _heavy_ lifting. When I’m already barely treading water, burdening me with another hundred pounds is not helpful.
### Some talk about finances
My overall cost of living is, at present, $4200/month. About 65% of that is housing expenses (mortgage, property taxes, insurance, utilities, etc.). Most of what remains is medical expenses (expensive medications, insurance, copays for medical appointments, and so on).
At my current burn rate, I have enough savings to last quite a while, _but_ if I were to start paying out-of-pocket for the help I need, my savings would disappear pretty quickly, and they are only half-measures anyway. For example, cleaning services generally don’t do any of the hard parts, and around these parts would cost me another $1000/month for the amount of help I need. And while I can (and often do) outsource my travel to Lyft, that adds up _real_ fast, and anyway having a way to get places doesn’t help when I’m feeling too tired to even go anywhere to begin with.
_Theoretically_ I could reduce my expenses significantly if I were to move somewhere cheaper and completely upend my life and lose what little social life I have already, but as I wrote about previously, a place that actually fits my access needs while also being affordable doesn’t seem to exist.
I also recognize that I am in an incredibly privileged position. I don’t currently have to rely on anyone to financially support me, and I’m not at risk of losing my home. If I were in this same health situation but _didn’t_ have the good fortune I’ve experienced throughout my life, I’d be in a much more desperate position. So many of my friends _are_ in that much more desperate position, and it hurts me that I can’t help them out.
I want this kind of support to exist for _everyone_. Everyone either needs help and support, or will someday.
### Some summarizing
I think that at the core, my biggest issue is just the _social_ isolation. I hate that I’m experiencing life through a straw and watching it pass me by on a timeline, and that any attempt at fixing this only puts me in a worse state.
I need my privacy and my own space but I also need connections with others.
Some sort of cohousing situation would probably be great. Like, I’d love to be part of a village with a common creative space, and where people look out for each other and make sure they’re doing okay. And where there’s mutual support for getting places. Maybe I need to look into local cohousing groups; there’s a lot of promising-looking ones happening, although most of them seem to be either established (with no openings) or are in a “we need people to do the hard physical labor of building this thing that may or may not exist in a few years” phase.
So at least in the interim, having more in-person social connections would be great, especially if it doesn’t involve me being the one to have to travel to make it happen, because that is very much off the table for me right now.
(And getting help with cleaning and grocery shopping would be nice.)
