#chronic illness moms

[thoradvice]

you don't have to be glad that it's not worse. that goes for everything. disability, trauma, mental illness, grades, finances, whatever. you're /allowed/ to be upset that things are the way they are. you don't have to be grateful for your situation - bad is bad. somebody else's suffering doesn't make yours less painful. it's okay to be angry

[plague-parade]

if upon being told about someones illness/condition, your first thought is to say “have you tried X?” i want you to step back for a moment and think to yourself “if i thought of X after hearing about this condition for the very first time, the person who has this condition very likely has thought of this and possibly tried it already”

we are tired of constantly being told to try the same things by people who didnt know our condition existed five minutes ago.

you dont need to offer any solutions or try to fix us. i know it might seem like a polite thing to do or that it shows you care, there are other ways to show us you care.

[punisheddonjuan]

@strawberryswitchblader One of the problems surrounding Long Covid as a diagnosis is that it encompasses an overly broad variety of post-acute sequelae. You have people experiencing everything from scarring on the lungs, liver and kidney damage, to loss of smell. Then there are those who develop dysautonomic conditions like POTS or who are later diagnosed with ME/CFS and experience Post-Exertional Malaise. There is also a very large (perhaps even the majority) group of persons who will experience a prolonged but temporary period of post-viral fatigue; these are the people who recover gradually on their own, generally within a timeframe of six to eight months. It's not really exercise that leads to their recovery, they would have recovered on their own, and may even have recovered more quickly through a program of radical rest. My beautiful girlfriend is dealing with some post-viral fatigue right now after having gotten sick with mononucleosis this past summer. It's been a real struggle for her dealing with it, but she's also not experiencing PEM, so I'm confident she'll fully recover.

Many of the people who make claims about recovering from "chronic fatigue syndrome" through exercise therapy or some psychological treatment are in this post-viral fatigue category and mistaking correlation for causation and forgetting that the plural of anecdote is not data. The data overwhelmingly supports the notion that for patients experiencing PEM, graded exercise leads to a worsened disease state and a potentially permanently lowered baseline. Before I was diagnosed it's precisely how I inadvertently powerlifted, nightwalked and gradschooled myself into becoming housebound.

And having lived with ME at varying degrees of severity going on twenty-seven years now, I gotta say, it's very boring resting all the time. You get antsy fast. If all it took to get better was walking a bit more every day, I'd jump at the chance, but exercise doesn't really do much for chronic CD8+ T cell exhaustion, or hypofusion causing excess calcium and sodium buildup in skeletal muscles leading to mitochondrial damage. There was a paper that came out just a few months ago that published the results of analyzing blood samples from nearly 1500 ME/CFS patients and 130,000 healthy controls, and they discovered hundreds of biomarkers which indicated everything from insulin resistance to poor blood oxygenation, mitochondrial dysfunction, and systemic chronic inflammation. You can't fix any of that with exercise.

It's all a mess, there really needs to be stricter research diagnostic criteria, and better delineation between the various subtypes. It would clear up so much confusion, but that's also why there haven't been tighter criteria. Exercise and therapy makes for a very inexpensive treatment, one that insurance companies are far more willing to back than experimental anti-viral treatments or IVIg therapy, and in some countries the disability allowances for psychological conditions is less than for physical conditions. If you keep it ambiguous if Long Covid or ME/CFS or fibromyalgia or POTS are physical or psychological diseases, well you save austerity governments a few bucks there too.

[gorgeousgreymatter-x]

funny story my wart was not large but it was deep because it was there for about a decade because I also got diagnosed with Crohns a little over a decade ago and the feet were just not a priority friends

i actually scared the derm because he froze for like a straight minute and realized I hadn't moved or made a single sound and he was like oh wow you have a high pain tolerance

and I was like haha yeah I feel it I just tell myself it's not happening and do it anyway lol chronic pain ammirite

he did not laugh lmao

lol also yesterday I got the wart frozen on my heel for like the 5th time and now I can't walk because of the hole in my foot

my body is great ya'll it's just great out here

[thedisablednaturalist]

literally my boyfriend is my painkiller.

Whenever I'm with him my pain goes down so much I can ignore it. Yea sometimes there's days where nothing helps the pain but at least he's there to take care of me. Most times tho his presence has a drastic effect on my pain levels. Maybe it's cause when he's around I feel less stressed and more safe and secure? Or maybe it's cause he's basically a human-shaped heating pad

[chronic-counter-user000]

PRAISE THE FUCKING LORDS WE HAVE A CANE

CELEBRATION

MY FIRST MOBILITY AID

[lupusbaby]

Today my mom goes, “I went to bed so early last night! Have you ever been so exhausted that you feel achy and sick from it?” and me and my sister did The Look™ at each other and then I said “yes…constantly every day”

[ohgreat-moretapes]

Tim I noticed a lot of indigenous patches on your jacket, are you Native?

Idk what my dad was 'cause I never knew him, but yeah my mom is (or... Was.. I guess..) Muscogee, the tribe native to the part of Alabama I'm in.

If I remember correctly she came to Alabama from Oklahoma (where a lot of Natives were displaced to in the 1800s) to "get back to her roots."

But yknow, I was separated from her in childhood (which tbh is upsettingly common for Native families) and I was raised in a very white very Catholic asylum so I'm not as connected to the culture as I'd like to be.

-Tim

[sickiehugs]

When a character is feeling super sick and shitty but they don't have a fever, so they aren't taking it seriously or resting because to them, they aren't really sick unless there's visible proof. Maybe it comes from when they were growing up, and their family never took their illness seriously unless there was a fever. Maybe they would accuse them of lying to get out of things. So now, they worry if that really is the case. They work themselves to the bone and feel like they're going to collapse, but they aren't really sick unless they have a fever.

Bonus points if they have a partner who cares about their well-being, and as soon as they see them in the state they're in, they immediately make a fuss and insist that they rest. The character somehow feels good, even though they don't want their partner worrying, because someone is finally making it a big deal. It's finally real, it's finally serious.

[toadilyoptimistix]

The little things

One hard thing about being not just disabled but disabled as a mom is that so many things don't ever get done. There are always cheerios on the floor. The trash always needs to be taken out. And who the heck knows what kind of pain is waiting for me every day when I get out of bed.

Yesterday I had a bad episode of weakness and bolts of pain just parading around in my body and man that sucked. I could barely walk, had a minute where I couldn't sit up without help, and everything hurt. I couldn't do anything. I couldn't take care of my toddler and I needed help. But who can help when everyone is so busy with jobs and obligations? Nobody. So I had to just power through the day. But you know what? My toddler knew I was doing my best and that I was in a lot of pain.

I was feeling like a total failure as a mom and a human. And this tiny person who is my offspring chose to sit with me and refused to get up when the pain was at its worst. This kid who can't stand to be still was determined to make sure I wasn't alone. And he met me more than halfway with my attempts to meet his needs. What kind of one year old brings you a diaper so you don't have to get up and get it? The special kind. It seems like such a little thing for him to have sat with me for two hours but it was what got me through the day.

Do the little things for people. You never know the impact it can have. Especially for those who are disabled and struggling. That small act of kindness can truly make a bad day bearable. Open the door for the older folk. Pick up those keys for the pregnant woman. Tell your waiter that you appreciate them. You know the stuff.

[crippled-peeper]

I miss you mom

Happy 52nd heavenly birthday

I hope you’re proud of us kids

I’m sorry covid had to kill you

I won’t forget you. I won’t let anyone forget us

I love you

[tumble-tv]

I love waking up at 2 in the morning when my muscle relaxers wear off and lying in pain while any movement causes my legs to spasm. It's really the best part of my day. /sarcastic

[bizlybebo]

if you’re thinking of developing a chronic illness Don’t this gluten free shit has me eating like a rabbit

[thedisablednaturalist]

I hate how many of us physically disabled people have been harassed by street preachers because they see us as a way to prove their faith instead of actual human beings

[dinkbear]

what is it about using a mobility aid that makes people forget you’re human? 🤔

[th3wizardoz]

Y’all ever get the Head Heavies? You know, when you can really tell that your brain and skull weights like 10 pounds and you have to give your neck a break bc it so tired it hurts? No? Just me? Cool!