I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an #advocate? I need help.
I’ve tried every level of government and they simply won’t help. Ask people in real life if they have somewhere for me to go. Is anybody an advocate? I need help.
"The Sick Times, the nonprofit newsroom focused on Long Covid and the ongoing Covid-19 pandemic, is excited to announce it has received an award of $250,000 from the biotech giving fund Kanro. This grant will fund the organization’s general operations over the next 18 months, enabling its expansion to a larger newsroom."
"… we invite you to witness the profound narrative of Sean Henneberry, a brave soul who has been navigating the turbulent waters of ME/CFS and Postural Orthostatic Tachycardia Syndrome (POTS) since his early teens."
I got COVID-19 back in mid-February for the first time. I'm feeling a lot better, but I have strange lingering symptoms. It's April 7th. Tired and loss of focus by 2pm, and ever since I got infected, I've been smelling weird odors and having similar aftertastes. Not consistent at all. Has anyone else experienced these symptoms? #COVID#COVID19#LongCOVID@longcovid
Lots of good responses here but I'll add this - folks with #LongCovid or #MEcfs might want to check for orthostatic intolerance.
Diagnosis is by tilt table test (gold standard) or NASA lean test (easier / cheaper but may not detect some types)
Meds might help, but even if they don't work it's helpful to know that standing, or even sitting upright for long periods, can make symptoms worse. Reclining with feet elevated, or lying down, is better
For example, the shower seat. I've had to use one of those since age 29 (helps decrease symptoms and reduces risk of fainting). I'm in my 60s now so that's more than 30 years.
I do feel lucky that I was able to find good doctors. I had to go through a lot of bad doctors to find them, though.
And I'm always happy to hear more about #DecodeME ❤️
Do these cooler type things work at all? I have to survive another upcoming #heatwave and can’t regulate my body temperature (#dysautonomia) so am risking #heatstroke again. I’m still recovering from last week so do not want.
Just humidity machines? (Humidity makes thinks even worse).
https://
sotrends.com/frigus-pro-sale/
(Sorry if this dodgy link braining not good.)
Have no air conditioning & abuser will not allow me to have one.
Any ideas? A fan doesn’t cut it. A fan with ice pack doesn’t work. Think I‘ve tried everything but welcome to ideas.
Yes I still need somewhere else to to live but in meantime trying to survive.
Do these cooler type things work at all? I have to survive another upcoming heatwave and can’t regulate my body temperature (#dysautonomia) so am risking heatstroke again.
Just humidity machines? (Humidity makes thinks even worse).
After over 18 months of suffering from various medical conditions due to #LongCovid, I finally got a referral to one of the best heart doctors in Canada to help treat and manage my #POTS.
The wait is about a year… but it’s something. I’ll take any positive news/hope.