Show threadAverage Punk Rock LoserSep 12, 2025
The last time I tried to pursue a more official diagnosis was a year after it had taken me out of the workforce, and they wanted me OFF ALL MEDS for 6 months to prove how bad it was.

I would have suicided. I've barely survived the few weeks at a time I've had to be unmedicated for the chronic pain in the past (thankfully I am p. well medicated with NO opioids at all at this point)

I WOULD end up entirely bedridden and need assistance bathing and feeding myself.

I ... it's a thing I would turn to hard street drugs to avoid, tbh.

Just thinking about it has shaken me badly and ruined my excitement. Dammit.
Time to move my focus of the day away from this.

#disabledlives
#mecfs
Show threadAverage Punk Rock LoserSep 12, 2025
If you are unfamiliar with this and wish to know more, here's the wikipedia link. The CDC does have a more condensed description of it, but I am loathe to link to them given that their credibility is likely to continue to decrease.

https://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chronic_fatigue_syndrome

#disabledlives
#mecfs
Myalgic encephalomyelitis/chronic fatigue syndrome - Wikipedia

Show threadAverage Punk Rock LoserSep 12, 2025
This is, frankly fucking exciting!

Like p. much all my conditions, I somehow am among the best functioning/most healthy of my cohort, which bodes well for my personal life expectancy. I feel validated for all the times I spent stuck in bed and felt like a shitty loser about it, while also grateful that I largely remained able to care for myself about it, which is to say, I never got to the point where someone else had to bathe me.

My biggest barrier to recognition that I'm disabled has been that I haven't got a nice easy name brand diagnosis to slap on it. And the fact that understanding of me/cfs is getting more established and recognised is VERY ENCOURAGING.

#disabledlives
#mecfs
Average Punk Rock LoserSep 12, 2025
So today I have done my ever so often look into how ME/CFS research/treatment is going and it's apparently been A LONG TIME since the last time. I now understand things about my first major event from it that hadn't made sense before. And there's an aspect that now has a name! PEM! A thing that I've tried to explain to doctors so, so, so, many times, and half the time had it dismissed as probably mental wrt to the non physical exertion (emotional) causing it.

So, mentally for me, that's HUGE, that it has a name and is regognised now. That's ... validating.

I've already got an appointment coming up with my primary, so a main focus of that is trying to get it better documented/back in my medical records so as to assist with disability application. I've been diagnosed with it off and on since it was discovered, and since I've been on good medication treatments for some years now, I had paused the ongoing fight to keep it on my diagnoses list.

#disabledlives
#mecfs
Average Punk Rock LoserSep 8, 2025
I just climbed a ladder to replace bulbs in my ceiling fixture!

That is the first time I've successfully climbed more than one rung on a ladder in probably 25 years!

#disabledlives
#disabilitylife
Show threadMs. Que BanhAug 14, 2025

Voluntarily exposing yourself & your kids to covid or measles doesn't help build up immune systems. It actually makes them weaker & more susceptible to catching more viruses.

What blows my mind is the cognitive dissonance some parents have. I'm talking about parents who support aborting babies who they find out will be born with disabilities. They're the same ones who are OK exposing their non-disabled kids to preventable death/disabilities! It's a serious WTF.

*It's mostly Christo-Fascist types who are against abortion, unless it's aborting a disabled baby. They don't seem to have issues aborting babies who may be born with one or more disabilities.

#DisabledLives #DisabledKids #PeopleWithDisabilities