New definitions of Long COVID

https://www.medpagetoday.com/infectiousdisease/longcovid/110595

Ongoing discussion regarding new Long Covid Definitions.
This will not be simple (as much as I would love it to be…)
https://www.medpagetoday.com/opinion/second-opinions/110658

Yes, I read that and others too, @jrg200911 , and think not much will matter. MORE, a colleague - a travel writer -flew to London from the US and had, because they were fully vaccinated (incl the '65+ better get another' one), they didn't use or take masks. While there, they got sick. And then sicker. Never thinking it were COVID .. until exposing others and testing on arrival back in the US.

I'd like there to be still emphasis on protection of self and others. And I'd be happy if at least my symptoms were considered as my symptoms and nothing I'd had pre positive.

I've had Covid 3 times, the second one was returning home after vacationing with 25 other people and staying in the same house for 2 weeks.
Not one other person besides me came down with Covid.
3rd time was also vacationing with 8 people in the same place and I was sick the entire 2 weeks we were there. Again, no one else came down with Covid.
I'm not sure what the relevance is other than it has something to do with your immune system.

The broad symptoms are definitely a problem.

I have blurred vision and hearing loss with tinnitus and hyperacusis. It is extreme and debilitating. So often when people hear my symptoms they say “Oh yes, I have that too.” Yet, they are going about their lives, so what they have is NOT what I have. The inference is that I should also be able to continue with my life as before.
I find this insulting to me as my life can NOT continue as before. If you occasionally have tinnitus, or you sometimes get blurry vision from too much screen time, it it NOT the same.

I think long Covid symptoms should be determined by the extent of your life changes. Are you able to go to work? Are you able to continue your normal routine?
Are you completely disabled? Minor symptoms confuse the issue, and minimize the suffering of so many.
I know some people are able to push through, or work from home, and make accommodations for their symptoms. Then there are those of us who can barely make it through the day, and life is destroyed. There should also be degrees of those diagnosed with long Covid.
It is a complex problem that has not, and perhaps will not be addressed.

The tough part is like "on a scale of 1-10, how severe is your pain?" when each of us has different impact.

I work for myself and have for years. Now, I must work less and have to make adjustments to much of my life to, as you do, hear, or move about.

So as you note, is is degrees of long COVID - and still I'd be glad to just have it recognized v. dismissed.

Certainly it needs to be recognized.

The one to ten assessment is tough because I might rate something a one or two and another might consider the same disability a ten. I think better to ask how it has changed your ability to function.
Even then, some people might have more ability to “push through” symptoms.

Early on, I was able to continue my life even while being pretty seriously impaired. I can’t do it anymore. My symptoms are worse, but part of it is also exhaustion from dealing with my condition.
After two years for me, I just can’t deal with life anymore.

Oh @dloos, yes, discussions about changes in one's ability to function would be good. Would our words be heard? Understood?

Your last line is concerning. Like you, I find dealing with life way too hard and I've "only" done this for 14 months not two years as you have.

If I had magic words or connections or ideas, I'd offer them. With each note to a friend who is visiting where I live that as much as I would like to see them, I fear I'll do what I always do now: say yes, schedule a meal or coffee out and then cancel at the last minute because I just can't expend the energy.

My hope is that in your life, other than us in this group, there is at least someone who is 'there for you.'

jeindc
Thank you for your kind words.

Yes I have a few friends who email and text, and that helps me to feel somewhat connected to life. My sister and my husband have stood with me always. My husband has had to assume all the daily chores of our life. I would not still be here without him.
And last, my son and his family come for short visits regularly. I had previously been very active in my three grandchildren’s lives. I can no longer do that, but they come anyway, and stay as long as I am able to have company.
In this regard I am very, very lucky and I know that.
But, I mourn the life I had.

I do have friends who did not understand my inability to accept invitations. Some of them no longer keep in touch. It’s as if they took my illness personally, and don’t approve how I deal with it. I can’t be too worried about them. I hope they never have to experience what I am going through.

A hug click seems not enough. I empathize and know this is a journey that caught us by surprise. Those who chose to not be friends have lost a caring person in their lives. THIS outlet has helped me immensely - knowing my strange to me and my docs symptoms are in fact not totally odd.
Stay here for support. Mayo please allow us to continue here - it is a lifeline.