#neuroimmune

[the-normaler]

shout-out to people with MS, we are like this fr 🤝 as someone with ME, every time I see something about MS its like. i don't understand how two incredibly complex conditions can be so similar yet different conditions. even the bullshit we've dealt with from the medical system historically. like, if im looking up a symptom to see what's causing it and something says it can be caused by MS I'm like oh ok so it's my ME

[only-knives]

OH. pacing is when you DONT keep acting as if you're in baseline after doing something you've realized triggers PEM.

reading this podcast : "So if you have a 72-hour lag between what you just did or what you did, and how you’re going to feel, you have 72 hours to really do a lot more." <- About how post-exertional symptom exacerbation (PEM) is often delayed.

[newhologram]

Thing about being disabled in youth is they say it’s not so bad, could be worse, will get better. I’m getting older + sicker in new ways with every year. Empty masturbatory words of empathy shut-off. Their support however? Could have spared me the anguish of spoonie isolation.

[just-4-thought]

photos created by and shared at the request of millionsmissing.org

I don’t do much these days with chronic illness despite being surrounded by it, but I wanted to participate and add to the virtual metrics of this highly underfunded/under-researched and under-treated systemic neuro-immune disorder that leaves 75% of people unable to work and 25% of people bedbound. Check out the website for ways to spread awareness and help.

[newhologram]

Sometimes chronic pain patients use rescue meds on days that aren't even that dire, bc we're fucking sick of the constant background noise of pain and need a goddamn break every once in a while. When it never stops, it makes me feel like I'm on thin ice. I'm so scared of falling.

[newhologram]

A really important thread by @mixtape_majesty

"There’s ~7 viruses circling globally that could change your life forever. A lot of people are comfortable gambling with other people’s lives when it comes to that. So here’s an appeal to self-preservation since community-preservation seems to have been resoundingly dismissed:

If you catch a virus that disables you: -will your employer allow time off for days when you are incapacitated? when you have doctors appointments? when you have procedures? -can you afford grocery delivery? -do you know people who can help you with physical tasks and labor? If you catch a virus that disables you: -do you have health insurance that will cover multiple doctor visits per year? -will your employer allow time off to recover from initial infection? will they tolerate multiple sick days per month? -can you pay rent when you miss work? If you catch a virus that disables you: -is there anyone to take you to doctors appointments if you can’t drive? -is there anyone to help you with child care? pet care? -do you know anyone who will continue to see you when you start declining indoor bars, parties, conferences? If you catch a virus that disables you: -is there someone to cook/prepare meals for you? if not, can you afford delivery? -do you have a bed that is comfortable enough to spend many of your days in? -do you have central heating and air for days when your body can’t regulate? If you catch a virus that disables you: -can you afford ongoing medicine costs? -do you live within driving distance of a pharmacy? if not, does your health insurance offer mail order? -do you have activities that will bring you joy when you’re too sick to leave the house? If you catch a virus that disables you: -do you have ways to keep in touch with your friends and family if you’re too sick to visit them, or vice versa? -do you have some hobbies/interests that don’t require high energy expenditure? -is your current home safe and comfortable? -Do you hate thinking about this? Disabled & immune compromised people have to think about these questions. This includes people newly disabled from COVID; incl those who protected themselves as best as they could, but were victims of govt negligence and lack of community care. Wear a mask to protect others. If you don’t care about others, wear a mask to protect yourself. If you don’t care about yourself OR others, then prepare for what’s coming."