Byn's Weird Brain

Today I painted a friend's doggo. He's an elderly rescue, and this guy has so much character. I just had to paint him! #dog #dogs #dogsoftwitter #portrait #art #artist #GoodBoy

I finally had an entire day that I didn't have to wear my sunglasses indoors! However, I am struggling with breathing issues, & my inhaler is almost gone. Is there any less expensive way to get an inhaler refill if I can no longer afford the dr? #disability #DisabilityTwitter

@SaraAna66550269 @IsabelRamirezRD This describes my eye issues as well.

@IsabelRamirezRD Eye pain (like being punched in the eye), swollen eyes, sensitivity to light, blurry vision, not able to follow moving objects on a screen, eyes not dilating properly.

How many people with #MECFS and #LongCovid have eye and visual problems . If other please comment

@IsabelRamirezRD I just had such extreme light sensitivity that I had to black out windows, keep it l lights off l, keep dark sunglasses on AND still has to keep eyes closed most of the time. And my vision goes downhill so fast, my Rx is shit after a month...

@CryptidSprinkle Thank you 🥰 After being in damn near complete darkness since Wednesday, I was able to have my eyes open AND my sunglasses OFF for a couple of hours today (as long as I started in my dark room). So much improvement. I'm tentatively hopeful. 🤞 #pwME #PEM #disability

@BynThereDoneTht 😟 What can I do to help Byn? 🩷🩷🩷

I am not in a great spot anyway, but losing the ability to use my eyes for the majority of the time is terrifying. In early 2020 with my first crash I was stuck in my darkened room for almost 3 months. The thought of that now is too much. I could really use some help. #pwm

Unfortunately, I can't use social media for very long. I have to use voice to text idek what to do. I am at a loss. I can't afford drs right now. I am mainly just looking for ways to calm or occupy my brain when I can't use my eyes, bc it's anxiety inducing. #disability

I am not in a great spot anyway, but losing the ability to use my eyes for the majority of the time is terrifying. In early 2020 with my first crash I was stuck in my darkened room for almost 3 months. The thought of that now is too much. I could really use some help. #pwME

(2/2) Only discussing acute Covid infection is the equivalent of telling people HIV is mild so there's no need to even test for it or protect others from it, while completely ignoring the fact that it results in AIDS. A MILD ACUTE #COVID19 INFECTION DOES NOT MEAN IT'S HARMLESS.

@drlouisenewson What if progesterone makes you feel worse? Is that normal at first? Or is it just going to continue?

There are lots of symptoms women can experience during the perimenopause and menopause and I am often asked if there’s a test you can take to definitively find out if the menopause (or perimenopause) is the cause of a woman’s symptoms. Although we can do blood tests to check your hormone levels, we do not usually do them during the perimenopause as your hormones fluctuate so significantly, results cannot be relied on to make a diagnosis as they can be very high or very low or even normal. During the menopause, hormone blood tests will be low but having low levels does not always mean that low hormone levels are the cause of your symptoms. Often, if we think symptoms are related to changing or low hormone levels and we want to determine if your symptoms are due to your perimenopause or menopause then we try topping up your missing hormones or giving HRT in a dose to suppress you own fluctuations of hormones (by prescribing the right dose and type of HRT / testosterone for you) and determine what impact that has on your symptoms.

@Danomary411 @bollyweed @luckytran @froglet80 Obesity isn't contagious.

@bollyweed @luckytran @froglet80 Now look up how many died of obesity related conditions

Basically most governments are now saying they will do almost nothing policy-wise to slow COVID-19 spread until horrific numbers of people die. But they are releasing limp statements with weak recommendations now to cover themselves from accountability for when things get worse.

@roxy_mojo I actually feel better on days after I have alcohol. I have more energy, I get things done, I'm not crushed by fatigue & brain fog all day. I do have pain, but I'll take pain over fatigue. This is not advice.

Washington Post: "Everyone should know the dangers of long covid" 'I hope public health authorities read the article and work harder to inform and protect the public accordingly. Everyone should know about the serious health risks of covid.' washingtonpost.com/opinions/2023/…

🚨It’s getting to the end of the month and we’re running bare bones on food and supplies. We’ll have enough for rent after my partner’s upcoming pay but then have nothing until mid September Anything at all helps to get us by until then so we can have enough food and refill meds

There is a special place in hell for public health officials who continue to erase #LongCovid — the most common adverse outcome from infection. 20 million+ Americans & thousands more every week. Covid is not over until we have treatments for #LongCovid

I honestly thought I was dying before I found the longcovid and pwME on Twitter.

@CryptidSprinkle I did cut way back on social media. Especially Facebook. Interactions were exhausting me, even when they weren't negative. Thank you for all these suggestions. They all seem so simple, but I just didn't think of those as doing things? Idk 😅

@BynThereDoneTht It's hard to say. I will say for me I try to reduce or eliminate sources of stress wherever possible or give myself physical, emotional and digital space. I also do what gives any relief for my symptoms including resting in low lighting or no lighting and comfy clothes.

Is there a healthy way to mitigate an emotional response to stress that will help alleviate the PEM/crash? LongCovid pwME disability I'm worried about my cat who was just Dxed with a tumor & she has surgery Tue. I am already struggling not to crash, just w/daily needs.

@FatiguedStill I've been wondering that myself as I'm fighting of another big crash.

@julierehmeyer The only point I could make is that my cognitive dysfunction from LongCovid has made it impossible for me to communicate my needs in a way that drs and scientists take seriously.

A question for my complex chronic illness peeps: If you were talking about LC and complex chronic illness overall to a roomful of open-minded, thoughtful scientists with wide-ranging backgrounds and interests, what points would you make?