Some really grim statistics on Long Covid

[Corraleno]

Study indicates that 2 million people in the UK, 3% of the population, have Long Covid. If US numbers are comparable, that would be 10 million Americans. And numbers are especially high among women, and people in social care, healthcare, and education — professions that are already hemorrhaging workers.

Excerpt from an article in The Guardian:

Figures from the Office for National Statistics (ONS) reveal that as of 1 May this year, 2 million people living in private households in the UK – or 3.1% of the population – reported they were still experiencing Covid symptoms more than four weeks after their first suspected coronavirus infection.

About two in five of those with long Covid, or 826,000 people, noted that infection was at least a year ago while one in five, or 376,000 people, said it was at least two years ago. In addition, 71% of those with long Covid said their symptoms had a negative impact on their day-to-day activities, with 20% saying their ability to undertake such activities had been “limited a lot”.
......

“As a proportion of the UK population, the prevalence of self-reported long Covid was greatest in people aged 35 to 69 years, females, people living in more deprived areas, those working in social care, teaching and education or health care, and those with another activity-limiting health condition or disability,” the ONS added.

Prof Danny Altmann, an immunologist and expert on long Covid at Imperial College London, described the latest figures as alarming. “They put to rest any vestige of hope that long Covid would somehow be just a thing of the early waves, would diminish in times of vaccination or ‘milder’ variants, or would just trail off,” he said.

“We’ve now created a far larger cohort of the chronically unwell and disabled than we previously had, say, within the entire national burden of rheumatoid arthritis, its healthcare costs, associated loss to quality of life and to the workplace. This couldn’t be further from ‘living with Covid’. It does necessitate some policy discussions, nationally and internationally.”

 

Edited June 1, 2022 by Corraleno
fix link

[happi duck]

I will never understand the willingness of people to gamble in light of long covid.  (By gamble I mean just being "over covid" and not even trying to not catch it or not spread it.)

 

[prairiewindmomma]

That number gut checks with about what I am seeing playing out IRL. While that does merit opening policy discussions, I don’t see change coming out of them. Here in the US, at least, we have chosen to largely ignore societally the burdens of poverty, access to healthcare, access to safe education, and so on. The greatest benefit likely to come from shedding light on the issue is that individuals can be educated as to why continuing to mask and take precautions is wise.

[Grace Hopper]

What I feel day to day is the understaffing everywhere, from restaurants to grocery stores to customer service lines for not only my personal needs, but those that are vital to maintaining software usage for the company I work for. Everything seems to take forever and it’s an real eye opener to how spoiled we’ve become. But one thing that truly frightened me was that last week a family member had to go in to the ER for a flare up of a chronic condition, and it was obvious that the familiar hospital was both cutting costs and short of staff. 

[Laura Corin]

5 minutes ago, Grace Hopper said:

What I feel day to day is the understaffing everywhere, from restaurants to grocery stores to customer service lines for not only my personal needs, but those that are vital to maintaining software usage for the company I work for. Everything seems to take forever and it’s an real eye opener to how spoiled we’ve become. But one thing that truly frightened me was that last week a family member had to go in to the ER for a flare up of a chronic condition, and it was obvious that the familiar hospital was both cutting costs and short of staff. 

My son is home for the summer. It seems like 30 percent of local retail and hospitality is looking for staff. He's having no problem finding jobs.

[Grace Hopper]

27 minutes ago, Grace Hopper said:

What I feel day to day is the understaffing everywhere, from restaurants to grocery stores to customer service lines for not only my personal needs, but those that are vital to maintaining software usage for the company I work for. Everything seems to take forever and it’s an real eye opener to how spoiled we’ve become. But one thing that truly frightened me was that last week a family member had to go in to the ER for a flare up of a chronic condition, and it was obvious that the familiar hospital was both cutting costs and short of staff. 

Quoting myself to clarify - my observation here may be misconstrued as a “we need to get back to normal” thought. It’s not. It’s a “one million people died and many are still sick so we can’t cease to be vigilant” thought. 

[Insertcreativenamehere]

1 hour ago, Grace Hopper said:

But one thing that truly frightened me was that last week a family member had to go in to the ER for a flare up of a chronic condition, and it was obvious that the familiar hospital was both cutting costs and short of staff. 

My son became acutely sick with pneumonia and low oxygen saturations over the weekend. My mom, a retired nurse, told me that he'd surely be admitted. The doctor at the urgent care wanted him to go by ambulance to the ER and assured me he'd be admitted. We went to our familiar children's hospital and it was crazy crowded -- they got him in right away, but we sat in an ER room for hours, planning to be admitted. It soon became clear that we would be in the ER overnight because there were no rooms available on the floor (or more likely, not enough nurses staffing beds.) After receiving IV fluids and medication, his condition improved to the point where they agreed to discharge him only because we have oxygen at home as well as monitoring equipment and familiarity caring for his complex medical needs. Any other time, he would have been admitted. He's on the mend now so it turned out OK for us but I wonder how many people who really need hospital-level care are getting turned away because of staffing shortages. 

Edited June 1, 2022 by Insertcreativenamehere

[Grace Hopper]

3 minutes ago, Insertcreativenamehere said:

My son became acutely sick with pneumonia and low oxygen saturations over the weekend. My mom, a retired nurse, told me that he'd surely be admitted. The doctor at the urgent care wanted him to go by ambulance to the ER and assured me he'd be admitted. We went to our familiar children's hospital and it was crazy crowded -- they got him in right away, but we sat in an ER room for hours, planning to be admitted. It soon became clear that we would be in the ER overnight because there were no rooms available on the floor (or more likely, not enough nurses staffing beds.) His condition improved to the point where they agreed to discharge him only because we have oxygen at home as well as monitoring equipment and familiarity caring for his complex medical needs. Any other time, he would have been admitted. He's on the mend now so it turned out OK for us but I wonder how many people who really need hospital-level care are getting turned away because of staffing shortages. 

How frightening! 
 

We had a long wait time in a NOT crowded ER due to patients waiting to be cleared from the ER area to beds upstairs. Which I feel sure were unavailable due to not having nurses. Our ER was not crowded and yet the wait time took forever and all the staffers mentioned how busy they personally had been - likely because each present had a higher than average patient load. 

[prairiewindmomma]

The hospital we normally go to currently has a nurse’s strike because the hospital is staffing at unsafe ratios, isn’t staffing for lunch breaks (is currently using the buddy system) and isn’t raising pay appropriately. They will pay crazy amounts of money for contract staff but won’t give reasonable bumps to FT workers. 

Edited June 1, 2022 by prairiewindmomma
strike not stroke....

[Happy2BaMom]

 @Corraleno Any reliable recent stats on the effect (or lack thereof) of boosters w/ regard to risk of long Covid? (that was a bad sentence, but hopefully you get what I mean)

@Grace & Prairie (& others). I'm not a HCW but have several (including hospital-based ones), all in different states, in my contacts. Nearly all describe hospital-based care as largely being in a state of near-collapse.....lights are on, bodies are still going through the motions, from a surface level procedures seem to be being followed, but....it is a *very* broken system, and the quality of care is really in the toilet. So many people have left that decades of experience, institutional knowledge, and communication skill are just.....gone. Teamwork has also been really broken, as many coworkers barely know each other, and every place is massively short staffed. It sounds really awful. I have no doubt that people are dying because of it...they're just hidden.

[Laura Corin]

50 minutes ago, Happy2BaMom said:

 @Corraleno Any reliable recent stats on the effect (or lack thereof) of boosters w/ regard to risk of long Covid? (that was a bad sentence, but hopefully you get what I mean)

I don't think the latest data have been analysed for that relationship yet. These data must be for Delta and don't include boosters. 

https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/articles/coronaviruscovid19vaccinationandselfreportedlongcovidintheuk/25october2021#self-reported-long-covid-before-and-after-vaccination

[TCB]

I have changed my motivation for continuing to mask, despite being 1 of about 10 in my whole county who do, from being mostly to protect others to mostly to protect myself. I have so far escaped Covid and I would like the long term effects to be a whole lot clearer before I can relax. It’s hard to have that conversation though, because so many have already had it, and don’t seem to want to think about that aspect, and I can certainly understand feeling like that! I came across someone last week, in their 40s, whose heart function is extremely poor now and previous Covid is the prime suspect. These are hard times to live in.

[Laura Corin]

2 minutes ago, TCB said:

I have changed my motivation for continuing to mask, despite being 1 of about 10 in my whole county who do, from being mostly to protect others to mostly to protect myself. I have so far escaped Covid and I would like the long term effects to be a whole lot clearer before I can relax. It’s hard to have that conversation though, because so many have already had it, and don’t seem to want to think about that aspect, and I can certainly understand feeling like that! I came across someone last week, in their 40s, whose heart function is extremely poor now and previous Covid is the prime suspect. These are hard times to live in.

I do meet friends to eat unmasked. I mask in all public situations when not eating or drinking.  Not knowing how long this will last, I am masking whenever I  can but not forgoing important events. Risk reduction, but acknowledging the risks I'm prepared to take.

My brother has long-term liver damage from Covid. 

[TCB]

3 minutes ago, Laura Corin said:

I do meet friends to eat unmasked. I mask in all public situations when not eating or drinking.  Not knowing how long this will last, I am masking whenever I  can but not forgoing important events. Risk reduction, but acknowledging the risks I'm prepared to take.

My brother has long-term liver damage from Covid. 

I still go places and do what I have to do, I’m not avoiding all risk. For me that’s impossible because of work etc. But I wear a mask inside public places, and I do everything possible outside. I took my biggest risk at my dd’s wedding a few weeks ago. We were super careful the 2 weeks before, but did not wear a mask for the wedding. I wanted to reduce my risk to others as much as possible by taking extreme care in those days before. We are almost 2 weeks out now and so far have not heard of any transmission from the day and I am so thankful for that! It is hard to keep up precautions when almost everyone has abandoned them.

[MercyA]

Also, from a new CDC study:

"Overall, 38.2 percent of COVID-19 survivors developed a post-COVID condition, compared with 16 percent of uninfected controls. In the 18 to 64 age group, 35.4 percent of survivors developed a post-COVID condition, compared with 14.6 percent of controls. In the 65 and up group, 45.4 percent of survivors developed a post-COVID condition, compared with 18.5 percent of controls.

The absolute risk difference between the percentage of COVID survivors and controls who developed a post-COVID condition was 20.8 percentage points for those between 18 and 64, and 26.9 percentage points for those 65 and up. Based on those calculations, the CDC estimates that one in five adults from 18 to 64 and one in four adults aged 65 and up developed at least one post-COVID condition."

Super scary.

https://arstechnica.com/science/2022/05/more-than-1-in-5-covid-survivors-may-develop-long-covid-cdc-study-suggests/?comments=1

[Pam in CT]

My household managed to avoid it for 26 months but we were smitten over the weekend, sigh, the home-from-college kid first and then me. Husband currently chilling in the MIL apartment hoping to escape it, in large measure due to concerns about long COVID.  Sigh.

[We're not having any scary symptoms, mercifully. But I feel like I'm moving through pea soup. I do NOT want this fog to persist for 2 years!!]

 

[dsmith]

13 minutes ago, MercyA said:

Also, from a new CDC study:

"Overall, 38.2 percent of COVID-19 survivors developed a post-COVID condition, compared with 16 percent of uninfected controls. In the 18 to 64 age group, 35.4 percent of survivors developed a post-COVID condition, compared with 14.6 percent of controls. In the 65 and up group, 45.4 percent of survivors developed a post-COVID condition, compared with 18.5 percent of controls.

The absolute risk difference between the percentage of COVID survivors and controls who developed a post-COVID condition was 20.8 percentage points for those between 18 and 64, and 26.9 percentage points for those 65 and up. Based on those calculations, the CDC estimates that one in five adults from 18 to 64 and one in four adults aged 65 and up developed at least one post-COVID condition."

Super scary.

https://arstechnica.com/science/2022/05/more-than-1-in-5-covid-survivors-may-develop-long-covid-cdc-study-suggests/?comments=1

Those numbers are really scary, especially going through covid now. I have this desire to live super healthy when I'm back to normal (I eat probably 70 - 80% WFPB now) just to counteract any lingering covid issues, which I hopefully won't have. I am wondering if autoimmune diseases will be/are on the rise from covid. I've heard mention of new autoimmune disease post-covid but haven't looked for any studies or articles. Having 2, possibly 3 autoimmune diseases, I'm worried this may cause a new one to appear or cause an MS flare.

[ieta_cassiopeia]

Everyone in my household is still strictly masking whenever out of the house unless eating/drinking at least 2 metres away from people not in my household, and avoiding crowds. I have to accept people getting 1 metre of me at work because the proximity rules got changed a few weeks ago, but I'm still not using the right given out at that time to de-mask at my desk. I am planning to go to a couple of concerts, but do not yet feel ready to go to the town centre when it is busy. Especially with many other people now having sloppier masking technique (or indeed dropping masking altogether)

I've definitely got some odd post-COVID symptoms (swollen feet) and don't want more. (Nobody else in my household who got COVID is reporting such symptoms, and my brother's still managed not to have COVID).

I would expect autoimmune diseases to be on the rise because of the sheer number of other diseases that also rise in people who have had COVID infections.

[TravelingChris]

3 hours ago, dsmith said:

Those numbers are really scary, especially going through covid now. I have this desire to live super healthy when I'm back to normal (I eat probably 70 - 80% WFPB now) just to counteract any lingering covid issues, which I hopefully won't have. I am wondering if autoimmune diseases will be/are on the rise from covid. I've heard mention of new autoimmune disease post-covid but haven't looked for any studies or articles. Having 2, possibly 3 autoimmune diseases, I'm worried this may cause a new one to appear or cause an MS flare.

Yes, I thiink a lot is autoimmune.  Others are the results of blood clots since COVID in particular clots blood.

[YaelAldrich]

@Pam in CT I'm so sorry your household is now awash in COVID.  We are in the midst of it as well and I am not enjoying this at all!   I hope you have an easy time of it and that your Shavuot is cheesecake filled - not covid ridden!

[lewelma]

I'm definitely still masking, but so is everyone else.  New Zealand is has a national mandate that you must mask in these locations. Compliance is 100%, but about 1 in 20 wear it below the nose.

You must wear a face mask:

• on domestic flights
• on public transport
• at indoor arrival and departure points for domestic flights and public transport
• school busses (if over 12 years old)
• in taxis or ride share vehicles
• supermarkets, shopping malls, pharmacies, petrol stations, takeaway food stores, and all retail stores
• museums and libraries
• at a vet clinic
• visiting the indoor area of a court or tribunal
• central government agencies, social service providers, and NZ Police
• when visiting a healthcare or aged care facility
• my university and my son's but this is not nationally mandated

Edited June 2, 2022 by lewelma

[Pam in CT]

12 minutes ago, YaelAldrich said:

@Pam in CT I'm so sorry your household is now awash in COVID.  We are in the midst of it as well and I am not enjoying this at all!   I hope you have an easy time of it and that your Shavuot is cheesecake filled - not covid ridden!

You as well.  Earlier tonight I took some frozen blintzes out, fried them up in "generous amounts of butter" as per instructions, which took all of three minutes, and announced to S that it's actually a commandment to have blintzes and cream for dinner when you're battling COVID.  #PerfectPlagueFood, LOL.

May you and yours recover fully and soon.

[Ausmumof3]

4 hours ago, dsmith said:

Those numbers are really scary, especially going through covid now. I have this desire to live super healthy when I'm back to normal (I eat probably 70 - 80% WFPB now) just to counteract any lingering covid issues, which I hopefully won't have. I am wondering if autoimmune diseases will be/are on the rise from covid. I've heard mention of new autoimmune disease post-covid but haven't looked for any studies or articles. Having 2, possibly 3 autoimmune diseases, I'm worried this may cause a new one to appear or cause an MS flare.

This is what some of the zero covid people are talking about - more based on the virus mechanisms I think than on studies. 

[busymama7]

4 hours ago, dsmith said:

Those numbers are really scary, especially going through covid now. I have this desire to live super healthy when I'm back to normal (I eat probably 70 - 80% WFPB now) just to counteract any lingering covid issues, which I hopefully won't have. I am wondering if autoimmune diseases will be/are on the rise from covid. I've heard mention of new autoimmune disease post-covid but haven't looked for any studies or articles. Having 2, possibly 3 autoimmune diseases, I'm worried this may cause a new one to appear or cause an MS flare.

I have a new autoimmune diagnosis unspecified still.  It might honestly be something totally new that will be what long covid is.  Or it is the beginning of lupus which is possible. I am currently not flaring but its the worst feeling still because I don't know if I'm going to fall into a horrible flare any min now.  Trying to be thankful for how I'm feeling now and keep on a strict eating plan as I do believe it is reducing symptoms.

[Faith-manor]

Dd, hubby, and both kids got it three weeks ago. All but our two year old grandson had been fully vaxed. Son in law was the only person left in his entire building at work still wearing a mask  (eats lunch in his car) so this was a ticking time bomb situation. He got it and brought it home to the family. We were so concerned because of his asthma and six year old grandson's heart condition. They had mild symptoms except the two year old who was very sick and ran fevers of 104 for days, fevers that would not break or come down for very long at all. He had to have IV's in the ER twice. But, he bounced back really well despite the severity. Our other grandson had a mild fever and mild gastrointestinal distress for one day, that was it, and is right as rain. Even son in law came through just fine despite his pre-existing condition. Our daughter however is doing very poorly. She had mild upper respiratory symptoms, fatigue, and mild fever and headache and thought she would come through well, and then was hit one week after her initial symptoms ended with debilitating fatigue and joint aches. She is almost non functional. Son in law had to use up all his paid vacation for his isolation period and now has none left to use to take care of his family. Our six year old grandson is absolutely amazing. He helps his little brother use the potty, makes breakfast and lunch for his mother and brother, plays and reads to his brother, and even did a load of laundry yesterday all by himself. She can barely walk from one end of the house to the other.

I couldn't get away last week to go down when it hit her because my mom and mother in law had medical appointments this week with specialists down in the Detroit area. I couldn't find a driver for them, and Mark couldn't take any time off work this week. But I leave this weekend, and will be temporarily moving in with them. She had a year round homeschool schedule for grandson, and he is one of those crazy little "must do schoolwork" kind of kids who has been opening up his math curriculum this week and trying to figure it out on his own. So I will be homeschooling again, and taking care of her and the kids. I have no idea what to expect in terms of how long I will be needed or if she is facing long term disability. She is only 30, and hasn't worked since she was injured so bad as a paramedic therefore she doesn't have her ten years of social security credits and is ineligible for social security disability. She was also in the middle of getting her pre-natal and birth educator license, had just gotten her CPR instructor's done, so that work future is on hold. Thankfully, it was going to be a few months before her OB and CNM were ready for her to begin holding classes.

Her doctor has some ideas for treatment. But of course this disease is so new, everyone is just stabbing in the dark. So I am very scared for her! Mark has four years before he can retire, and we can move permanently to Huntsville, and things are going to get very very dicey here if he is trying to work his insane job AND deal with the two elderly mothers while I am away all the time caring for Dd and grandsons. I don't know how we will manage it. I really don't. I am heart broken for dd, and will have to figure out how to make this work for as long as it takes. At the moment, I am nervous and really upset. I am staying away from the other humans because I could easily rip their heads off with their stupid million dead, ten million sick but who gives a crap mind set.

 

[busymama7]

3 hours ago, Faith-manor said:

Dd, hubby, and both kids got it three weeks ago. All but our two year old grandson had been fully vaxed. Son in law was the only person left in his entire building at work still wearing a mask  (eats lunch in his car) so this was a ticking time bomb situation. He got it and brought it home to the family. We were so concerned because of his asthma and six year old grandson's heart condition. They had mild symptoms except the two year old who was very sick and ran fevers of 104 for days, fevers that would not break or come down for very long at all. He had to have IV's in the ER twice. But, he bounced back really well despite the severity. Our other grandson had a mild fever and mild gastrointestinal distress for one day, that was it, and is right as rain. Even son in law came through just fine despite his pre-existing condition. Our daughter however is doing very poorly. She had mild upper respiratory symptoms, fatigue, and mild fever and headache and thought she would come through well, and then was hit one week after her initial symptoms ended with debilitating fatigue and joint aches. She is almost non functional. Son in law had to use up all his paid vacation for his isolation period and now has none left to use to take care of his family. Our six year old grandson is absolutely amazing. He helps his little brother use the potty, makes breakfast and lunch for his mother and brother, plays and reads to his brother, and even did a load of laundry yesterday all by himself. She can barely walk from one end of the house to the other.

I couldn't get away last week to go down when it hit her because my mom and mother in law had medical appointments this week with specialists down in the Detroit area. I couldn't find a driver for them, and Mark couldn't take any time off work this week. But I leave this weekend, and will be temporarily moving in with them. She had a year round homeschool schedule for grandson, and he is one of those crazy little "must do schoolwork" kind of kids who has been opening up his math curriculum this week and trying to figure it out on his own. So I will be homeschooling again, and taking care of her and the kids. I have no idea what to expect in terms of how long I will be needed or if she is facing long term disability. She is only 30, and hasn't worked since she was injured so bad as a paramedic therefore she doesn't have her ten years of social security credits and is ineligible for social security disability. She was also in the middle of getting her pre-natal and birth educator license, had just gotten her CPR instructor's done, so that work future is on hold. Thankfully, it was going to be a few months before her OB and CNM were ready for her to begin holding classes.

Her doctor has some ideas for treatment. But of course this disease is so new, everyone is just stabbing in the dark. So I am very scared for her! Mark has four years before he can retire, and we can move permanently to Huntsville, and things are going to get very very dicey here if he is trying to work his insane job AND deal with the two elderly mothers while I am away all the time caring for Dd and grandsons. I don't know how we will manage it. I really don't. I am heart broken for dd, and will have to figure out how to make this work for as long as it takes. At the moment, I am nervous and really upset. I am staying away from the other humans because I could easily rip their heads off with their stupid million dead, ten million sick but who gives a crap mind set.

 

I am so glad that you are able to go and help your daughter.  I did not have super little ones thankfully.  I think going off sugar and wheat would have helped me sooner but I literally had no ability to do that because I was living on what I could scrounge or what my teens could make.    Please feed your daughter some kind of low inflammatory diet and see if it helps.   

[Spy Car]

5 hours ago, Faith-manor said:

Dd, hubby, and both kids got it three weeks ago. All but our two year old grandson had been fully vaxed. Son in law was the only person left in his entire building at work still wearing a mask  (eats lunch in his car) so this was a ticking time bomb situation. He got it and brought it home to the family. We were so concerned because of his asthma and six year old grandson's heart condition. They had mild symptoms except the two year old who was very sick and ran fevers of 104 for days, fevers that would not break or come down for very long at all. He had to have IV's in the ER twice. But, he bounced back really well despite the severity. Our other grandson had a mild fever and mild gastrointestinal distress for one day, that was it, and is right as rain. Even son in law came through just fine despite his pre-existing condition. Our daughter however is doing very poorly. She had mild upper respiratory symptoms, fatigue, and mild fever and headache and thought she would come through well, and then was hit one week after her initial symptoms ended with debilitating fatigue and joint aches. She is almost non functional. Son in law had to use up all his paid vacation for his isolation period and now has none left to use to take care of his family. Our six year old grandson is absolutely amazing. He helps his little brother use the potty, makes breakfast and lunch for his mother and brother, plays and reads to his brother, and even did a load of laundry yesterday all by himself. She can barely walk from one end of the house to the other.

I couldn't get away last week to go down when it hit her because my mom and mother in law had medical appointments this week with specialists down in the Detroit area. I couldn't find a driver for them, and Mark couldn't take any time off work this week. But I leave this weekend, and will be temporarily moving in with them. She had a year round homeschool schedule for grandson, and he is one of those crazy little "must do schoolwork" kind of kids who has been opening up his math curriculum this week and trying to figure it out on his own. So I will be homeschooling again, and taking care of her and the kids. I have no idea what to expect in terms of how long I will be needed or if she is facing long term disability. She is only 30, and hasn't worked since she was injured so bad as a paramedic therefore she doesn't have her ten years of social security credits and is ineligible for social security disability. She was also in the middle of getting her pre-natal and birth educator license, had just gotten her CPR instructor's done, so that work future is on hold. Thankfully, it was going to be a few months before her OB and CNM were ready for her to begin holding classes.

Her doctor has some ideas for treatment. But of course this disease is so new, everyone is just stabbing in the dark. So I am very scared for her! Mark has four years before he can retire, and we can move permanently to Huntsville, and things are going to get very very dicey here if he is trying to work his insane job AND deal with the two elderly mothers while I am away all the time caring for Dd and grandsons. I don't know how we will manage it. I really don't. I am heart broken for dd, and will have to figure out how to make this work for as long as it takes. At the moment, I am nervous and really upset. I am staying away from the other humans because I could easily rip their heads off with their stupid million dead, ten million sick but who gives a crap mind set.

 

Very sorry to read this Faith.

Does your daughter experience what is called "post-exertional malaise" (aka PEM), which means her symptoms noticeably worsen when she tries to push past her limits (and the limits can include both physical and cognitive exertion) and then experiences a "crash" that can last for days (or even longer)?

Bill

 

 

[Faith-manor]

1 minute ago, Spy Car said:

Very sorry to read this Faith.

Does your daughter experience what is called "post-exertional malaise" (aka PEM), which means her symptoms noticeably worsen when she tries to push past her limits (and the limits can include both physical and cognitive exertion) and then experiences a "crash" that can last for days (or even longer)?

Bill

 

 

Not that she has reported. But she is not pushing herself either. A friend of hers is there today to do some things around the house, pick up a grocery order, and make sure the boys are doing okay. Probably the main thing is that if C is not tired and doesn't go down for a nap, she stays awake just for safety sake. I don't know if she is sleeping as much as she needs to in order to make strides. It is hard to tell from here.

[Faith-manor]

1 hour ago, busymama7 said:

I am so glad that you are able to go and help your daughter.  I did not have super little ones thankfully.  I think going off sugar and wheat would have helped me sooner but I literally had no ability to do that because I was living on what I could scrounge or what my teens could make.    Please feed your daughter some kind of low inflammatory diet and see if it helps.   

I plan on it. They already do not have wheat in the house because her dh is allergic. She allows only very limited sugar. But, I also know that when my son in law can't get home in time to cook dinner, he brings fast food, and that is not good. No judgment. He is working full time, has a half hour commute each way, and recently had covid too, so he is just doing his best. The poor guy does not know how to cook much variety so he gets her cookbooks out on the weekend, and is slow going just front lack of practice. He loves them and is doing his best, often quite tired at the end of the work day. So it will be good when I get there. I make some mean soups and stews, Mediterranean and Middle Eastern dishes. So hopefully if there is a nutrition need in order for her to recover, I will be able to provide it.

[Harriet Vane]

1 minute ago, Faith-manor said:

I plan on it. They already do not have wheat in the house because her dh is allergic. She allows only very limited sugar. But, I also know that when my son in law can't get home in time to cook dinner, he brings fast food, and that is not good. No judgment. He is working full time, has a half hour commute each way, and recently had covid too, so he is just doing his best. The poor guy does not know how to cook much variety so he gets her cookbooks out on the weekend, and is slow going just front lack of practice. He loves them and is doing his best, often quite tired at the end of the work day. So it will be good when I get there. I make some mean soups and stews, Mediterranean and Middle Eastern dishes. So hopefully if there is a nutrition need in order for her to recover, I will be able to provide it.

For your sil, one thing that was a lifesaver for us when I had a long illness and even longer recovery was rotisserie chicken. Cheaper than fast food and far healthier. With it I could make rice or throw some potatoes in the microwave, plus a frozen or canned veg on the side.

That's not the way I cook as a rule. Generally I love making awesome food from scratch. But during the year of hellish exhaustion and the year of slightly-less-exhausted-but-still-a-mess, we ate a lot of rotisserie chicken.

[Acadie]

MIL is hospitalized with blood clots in her lungs after a few weeks of Covid. I'm glad FIL decided to take her in to the hospital last night when she was having breathing issues and that she's getting the care she needs.

She's had 4 shots and said she's shocked that she's having continued issues. It's criminal that public health officials aren't communicating the risks of Covid complications and long Covid in vaccinated and boosted people.

 

[Faith-manor]

5 minutes ago, Harriet Vane said:

For your sil, one thing that was a lifesaver for us when I had a long illness and even longer recovery was rotisserie chicken. Cheaper than fast food and far healthier. With it I could make rice or throw some potatoes in the microwave, plus a frozen or canned veg on the side.

That's not the way I cook as a rule. Generally I love making awesome food from scratch. But during the year of hellish exhaustion and the year of slightly-less-exhausted-but-still-a-mess, we ate a lot of rotisserie chicken.

He can't have rotisserie chicken. They always have paprika which is a nightshade. He is allergic to nightshades, wheat, dairy, and due to alpha gal from untreated tick disease, no mammal meat, and on top of that he is allergic to seafood. So it is very problematic. When he brings fast food home to his family, he still has to feed himself. He tends to eat simply, fresh veggies and fruit, tosses a chicken thigh in a pan with garlic, salt, and black pepper.

[Spy Car]

34 minutes ago, Faith-manor said:

Not that she has reported. But she is not pushing herself either. A friend of hers is there today to do some things around the house, pick up a grocery order, and make sure the boys are doing okay. Probably the main thing is that if C is not tired and doesn't go down for a nap, she stays awake just for safety sake. I don't know if she is sleeping as much as she needs to in order to make strides. It is hard to tell from here.

Both these answers are (relatively) good news.

Please encourage her not to push herself. My concern with long Covid is just how strongly it resembles the post-viral illness ME/CFS.

The hallmark symptom of ME/CFS is experiencing PEM. Other symptoms might include extreme fatigue, cognitive impairment (brain fog), and--for some--painful joints/muscles.

Many people with long Covid are reporting PEM. That's not good. Thus far ME/CFS is incurable, medically unexplained, and for almost everyone with it is a debilitating lifelong chronic illness.

Although what triggers ME/CFS is unknown, there does seem to be a near-universal consensus that attempting to "push through" one's fatigue (etc) during a post-viral illness is a huge risk factor in developing ME/CFS.

Thank goodness you are there for her. Really encourage her to rest and to be extremely mindful of not pushing beyond her energy envelope. Not ever, as she recovers. This sort of recuperation is not something that comes easily for many people, and is an extreme  luxury when one is a parent of a young child, but "not pushing" seems like it offers the best possibility of recovering (as opposed to developing a debilitating condition that never goes away).

Do encourage bed rest. Know that for many with post-viral illness that minimal exertion (even simple things like bathing/grooming) can spark PEM. Keep a very close eye on this.

Developing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome--or something that is an indistinguishable condition--is something to avoid. "Not pushing" and resting seems to give one the best odds. At this juncture, there are no other "treatments," with all due respect to a well-intentioned doctor who ideas about treatments.

Bless you, my friend.

Bill

 

 

Edited June 2, 2022 by Spy Car

[Lawyer&Mom]

2 hours ago, Faith-manor said:

He tends to eat simply, fresh veggies and fruit, tosses a chicken thigh in a pan with garlic, salt, and black pepper.

This would actually be a good diet for your daughter!  Low inflammatory, probably low-histamine if it’s the right vegetables.  (New histamine sensitivity is so common after COVID.)
 

As someone two plus years into LongCovid, here are my thoughts for someone dealing with severe fatigue post-covid:

1) Rest, rest and more rest.  (This is obvious, but so important.)

2) Look into feeding her Mitochondria.  They seem to be damaged by Covid. There are various supplements including CoQ10 and Acetyl-L-Carnitine.  This is fairly mainstream stuff, so I would ask her doctor.

3) She can be tested, and if needed treated for reactivated Epstein-Barr virus.  This is the virus that causes mono, and it seems that Covid can cause it to flare.  (Everyone gets Epstein-Barr at some point.)

4)  Check to see if she has orthostatic intolerance.  Does her heart rate go up when she stands up?  This is easy to check at home with a pulse-ox meter.   Lots of people have this as a problem post-covid, and there are easy ways to help maintain blood flow to the brain when she stands.  (Extra fluids, electrolytes, compression clothing, possibly medications.)  This is 100% mainstream and easy to discuss with a doctor.

5) LongCovid is serious and disabling, but many people do show improvements over time.  Months and years, not days and weeks, but still optimism is totally appropriate.

I’m so glad you can be with her!

Edited June 2, 2022 by Lawyer&Mom

[Faith-manor]

3 hours ago, Spy Car said:

Both these answers are (relatively) good news.

Please encourage her not to push herself. My concern with long Covid is just how strongly it resembles the post-viral illness ME/CFS.

The hallmark symptom of ME/CFS is experiencing PEM. Other symptoms might include extreme fatigue, cognitive impairment (brain fog), and--for some--painful joints/muscles.

Many people with long Covid are reporting PEM. That's not good. Thus far ME/CFS is incurable, medically unexplained, and for almost everyone with it is a debilitating lifelong chronic illness.

Although what triggers ME/CFS is unknown, there does seem to be a near-universal consensus that attempting to "push through" one's fatigue (etc) during a post-viral illness is a huge risk factor in developing ME/CFS.

Thank goodness you are there for her. Really encourage her to rest and to be extremely mindful of not pushing beyond her energy envelope. Not ever, as she recovers. This sort of recuperation is not something that comes easily for many people, and is an extreme  luxury when one is a parent of a young child, but "not pushing" seems like it offers the best possibility of recovering (as opposed to developing a debilitating condition that never goes away).

Do encourage bed rest. Know that for many with post-viral illness that minimal exertion (even simple things like bathing/grooming) can spark PEM. Keep a very close eye on this.

Developing Myalgic Encephalomyelitis/Chronic Fatigue Syndrome--or something that is an indistinguishable condition--is something to avoid. "Not pushing" and resting seems to give one the best odds. At this juncture, there are no other "treatments," with all due respect to a well-intentioned doctor who ideas about treatments.

Bless you, my friend.

Bill

 

 

Thank you, Bill! You are such a good forum friend, and I very much appreciate you.

I will stay for two or three weeks, and if she needs more care, will be bringing her back to Michigan for two weeks while I do some things for the elderly mothers, and spend the 4th weekend with our middle son and his fiance` whom we do not get to spend time with very often. N and C will have uncles and aunties (eldest son has his life partner as well) to love them and keep them busy. Then we will head back to Alabama and see how she is doing.

Her doctor's idea is actually that she must have extensive rest, do nothing rest. He wants her to have some early morning sun before it gets hot out, feet up just sitting. And obviously he knows she has two little ones and that doesn't really work even though it is needed. I told son in law to let the laundry accumulate this week so he doesn't worry about that in the evenings. I will get that done when I get there.

N called me today to ask if I thought it would be okay for him to cook for his mamma. It made me cry. He is six, and I had to say that I didn't think it was safe because he is still young enough to need supervision and mamma needed to rest. But he had never made a tuna salad sandwich before, so I was able to coach him through that plus making a salad for her. He made peanut butter sandwiches with grapes, blueberries, and baby carrots on the side for he and his brother. He is such a precious child, and I felt like a heel for not getting into the car immediately and getting myself down there. Mother in law has to see the vascular doctor tomorrow, and I have to go with her. Saturday cannot come soon enough.

[Mom_to3]

I am so sorry to hear the bad news regarding your families...I am so upset that we are letting this happen, over and over and over again, and that people who are careful can't avoid this suffering. 

[Spy Car]

Just now, Faith-manor said:

Thank you, Bill! You are such a good forum friend, and I very much appreciate you.

I will stay for two or three weeks, and if she needs more care, will be bringing her back to Michigan for two weeks while I do some things for the elderly mothers, and spend the 4th weekend with our middle son and his fiance` whom we do not get to spend time with very often. N and C will have uncles and aunties (eldest son has his life partner as well) to love them and keep them busy. Then we will head back to Alabama and see how she is doing.

Her doctor's idea is actually that she must have extensive rest, do nothing rest. He wants her to have some early morning sun before it gets hot out, feet up just sitting. And obviously he knows she has two little ones and that doesn't really work even though it is needed. I told son in law to let the laundry accumulate this week so he doesn't worry about that in the evenings. I will get that done when I get there.

N called me today to ask if I thought it would be okay for him to cook for his mamma. It made me cry. He is six, and I had to say that I didn't think it was safe because he is still young enough to need supervision and mamma needed to rest. But he had never made a tuna salad sandwich before, so I was able to coach him through that plus making a salad for her. He made peanut butter sandwiches with grapes, blueberries, and baby carrots on the side for he and his brother. He is such a precious child, and I felt like a heel for not getting into the car immediately and getting myself down there. Mother in law has to see the vascular doctor tomorrow, and I have to go with her. Saturday cannot come soon enough.

This doctor is right. What a relief!

Unfortunately there are some practitioners with "treatments" than are not evidence based and some do harm.

[On Rant] In the UK, people with post-viral illness (ME/CFS) were pushed to "exercise" their way out of their illness and prescribed GET (graded exercise therapy) and/or CBT (cognitive behavior therapy, since  "it was all in their heads."). After hurting many people the head-quack, a psychiatrist named Simon Wessely was given a knighthood. Grrr!

And others who have all sorts of supplements to sell.[/Off Rant]

Morning sun sounds great. Good nutrition, absolutely. Rest. Extreme rest. And try to keep the heart rate down. And quiet.

No one really knows how to prevent a post-viral illness from turning into full-blown ME/CFS, but advocates for people with this illness all warn that having a series of PEM related crashes seems to increase the risk that one will never recover. That is a hard reality. 

A significant number of people with long Covid are experiencing and describing PEM. Many in the ME/CFS community are saying, this is not something "new" (although the virus may be novel) we know this illness. And it is not something the'd wish on their worst enemy. It remains to be seen. 

That you are not seeing PEM gives me a great deal of hope. Do watch for this. And ask. I believe this is critically important.

Within the poorly differentiated umbrella of "long Covid" there do seem to be people who recover. I'm not aware if there are studies to confirm it, but anecdotal evidence suggest that not experiencing PEM is a good sign for recovery (certainly relative to the alternative).

A causal connection between "overdoing it" and provoking crashes (PEM) and having that in turn bring on ME/CFS is not proven. But many suspect a link. As if something goes permanently haywire.

It is important that you family is there to support her. Prepare yourself that this could take some time.

So cute about N. I remember being a little boy who cooked to help out his mom. It's a good impulse.

I'm sorry to write heavy words. Recovering from a post-viral illness offers a very different future than if it develops into a lifelong chronic illness. Rest/non-exertion (mental and physical) seems to be a significant factor in recovery for people who stay out of PEM crashes.

Bill

 

 

 

 

[Faith-manor]

1 hour ago, Spy Car said:

 

I'm sorry to write heavy words. Recovering from a post-viral illness offers a very different future than if it develops into a lifelong chronic illness. Rest/non-exertion (mental and physical) seems to be a significant factor in recovery for people who stay out of PEM crashes.

Bill

 

 

 

 

Bill, No worries. You are not expressing any dark thoughts I haven't already had. I appreciate all of the advice.

I told Dd a few minutes ago that she will do exactly nothing while I am there. Nada. I will bungee cord her to the couch if necessary.

Oh, also, she is tracking her pulse. She is former paramedic and is aware of the research so she has been on top of that from the beginning. So far it looks okay. She has four pulse ox monitors in the house, and when they all came down with covid, she made everyone wear them practically as accessories! 

Edited June 3, 2022 by Faith-manor

[Spy Car]

35 minutes ago, Faith-manor said:

Bill, No worries. You are not expressing any dark thoughts I haven't already had. I appreciate all of the advice.

I told Dd a few minutes ago that she will do exactly nothing while I am there. Nada. I will bungee cord her to the couch if necessary.

Oh, also, she is tracking her pulse. She is former paramedic and is aware of the research so she has been on top of that from the beginning. So far it looks okay. She has four pulse ox monitors in the house, and when they all came down with covid, she made everyone wear them practically as accessories! 

Excellent!

I've heard some ME/CFS people have used fitness monitors (like Fitbits and Apple watches) to monitor activity (footsteps and, especially, heartrate) in a fashion that sort of the opposite from the common usage, to see how little they have done. Not "necessary," but perhaps if you have one laying around?

I'm so glad you, your daughter, and her doctor are well informed.

I will hold good thought for her recovery. Let us know how it goes.

Bill

 

 

Edited June 3, 2022 by Spy Car

[dsmith]

On 6/1/2022 at 10:41 PM, busymama7 said:

I have a new autoimmune diagnosis unspecified still.  It might honestly be something totally new that will be what long covid is.  Or it is the beginning of lupus which is possible. I am currently not flaring but its the worst feeling still because I don't know if I'm going to fall into a horrible flare any min now.  Trying to be thankful for how I'm feeling now and keep on a strict eating plan as I do believe it is reducing symptoms.

(((Hugs))) I've been sitting here getting nervous about a sudden MS flare, because I actually feel better than I usually do if I don't count the actual covid symptoms, and that's with a fever. (Fevers usually cause a pseudo-flare, but not even a hint of that.) I'm worried my immune system is in overdrive and will crash on me any minute. (This is not in any way scientific, lol.)  I also realize I need to do something about this kind of thinking because stress is a big trigger for me as well. But in general, diet makes a big difference for me in reducing symptoms, and I'm hoping it will help mitigate any damage covid may be doing to my body. 

[dsmith]

2 hours ago, Spy Car said:

Excellent!

I've heard some ME/CFS people have used fitness monitors (like Fitbits and Apple watches) to monitor activity (footsteps and, especially, heartrate) in a fashion that sort of the opposite from the common usage, to see how little they have done. Not "necessary," but perhaps if you have one laying around?

I'm so glad you, your daughter, and her doctor are well informed.

I will hold good thought for her recovery. Let us know how it goes.

Bill

 

 

I use my Apple Watch in a similar way on days that I know I need to push beyond what I normally do. Once I get to a certain step count I know I need to stop what I'm doing and relax for the rest of the day. If I get a notification that my resting heart rate is elevated I have generally gone too far and I usually need a few days to recover. I wish it would warn me earlier, even thought I can generally tell when it's elevated. Maybe I would pay better attention to an alert than to a physical sensation.🤷‍♀️ 

For the first 3 days of covid, my resting heart rate was up 20 bpm, walking heart rate was up 10 bpm, blood oxygen was down 2 - 5% and my respiratory rate while sleeping was up 2 brpm. I got the notification for the resting heart rate the first day of symptoms and decided to check the rest last night. They've all started going back to normal as my symptoms have lessened. It would be nice if my watch would warn me that I may have covid, and maybe that will be a feature in the future.

[Wishes]

@Faith-manor@Acadieso sorry you both are going through such difficult times. 

[Pawz4me]

5 hours ago, dsmith said:

(((Hugs))) I've been sitting here getting nervous about a sudden MS flare, because I actually feel better than I usually do if I don't count the actual covid symptoms, and that's with a fever. (Fevers usually cause a pseudo-flare, but not even a hint of that.) I'm worried my immune system is in overdrive and will crash on me any minute. (This is not in any way scientific, lol.)  I also realize I need to do something about this kind of thinking because stress is a big trigger for me as well. But in general, diet makes a big difference for me in reducing symptoms, and I'm hoping it will help mitigate any damage covid may be doing to my body. 

Weirdly enough, many of us with AI diseases tend to feel better than our norm when we're fighting a virus. The thinking I've seen is that our wonky immune systems temporarily stop attacking our own bodies so they can attack the virus, and so that makes us feel less bad than we normally do. Kind of a mixed blessing thing, I guess.

[dsmith]

3 hours ago, Pawz4me said:

Weirdly enough, many of us with AI diseases tend to feel better than our norm when we're fighting a virus. The thinking I've seen is that our wonky immune systems temporarily stop attacking our own bodies so they can attack the virus, and so that makes us feel less bad than we normally do. Kind of a mixed blessing thing, I guess.

Very interesting! I can't say I've experienced it previously with MS. Also, all of my major relapses have been after a virus in combination with stress and overexertion, so I'm planning on being extra careful for the next two months or so and will ramp it up with my dietary interventions. I've been trying to decide if my psoriasis/eczema is a little better or if it's wishful thinking. 

[Elona]

On 6/2/2022 at 7:08 AM, Faith-manor said:

Dd, hubby, and both kids got it three weeks ago. All but our two year old grandson had been fully vaxed. Son in law was the only person left in his entire building at work still wearing a mask  (eats lunch in his car) so this was a ticking time bomb situation. He got it and brought it home to the family. We were so concerned because of his asthma and six year old grandson's heart condition. They had mild symptoms except the two year old who was very sick and ran fevers of 104 for days, fevers that would not break or come down for very long at all. He had to have IV's in the ER twice. But, he bounced back really well despite the severity. Our other grandson had a mild fever and mild gastrointestinal distress for one day, that was it, and is right as rain. Even son in law came through just fine despite his pre-existing condition. Our daughter however is doing very poorly. She had mild upper respiratory symptoms, fatigue, and mild fever and headache and thought she would come through well, and then was hit one week after her initial symptoms ended with debilitating fatigue and joint aches. She is almost non functional. Son in law had to use up all his paid vacation for his isolation period and now has none left to use to take care of his family. Our six year old grandson is absolutely amazing. He helps his little brother use the potty, makes breakfast and lunch for his mother and brother, plays and reads to his brother, and even did a load of laundry yesterday all by himself. She can barely walk from one end of the house to the other.

I couldn't get away last week to go down when it hit her because my mom and mother in law had medical appointments this week with specialists down in the Detroit area. I couldn't find a driver for them, and Mark couldn't take any time off work this week. But I leave this weekend, and will be temporarily moving in with them. She had a year round homeschool schedule for grandson, and he is one of those crazy little "must do schoolwork" kind of kids who has been opening up his math curriculum this week and trying to figure it out on his own. So I will be homeschooling again, and taking care of her and the kids. I have no idea what to expect in terms of how long I will be needed or if she is facing long term disability. She is only 30, and hasn't worked since she was injured so bad as a paramedic therefore she doesn't have her ten years of social security credits and is ineligible for social security disability. She was also in the middle of getting her pre-natal and birth educator license, had just gotten her CPR instructor's done, so that work future is on hold. Thankfully, it was going to be a few months before her OB and CNM were ready for her to begin holding classes.

Her doctor has some ideas for treatment. But of course this disease is so new, everyone is just stabbing in the dark. So I am very scared for her! Mark has four years before he can retire, and we can move permanently to Huntsville, and things are going to get very very dicey here if he is trying to work his insane job AND deal with the two elderly mothers while I am away all the time caring for Dd and grandsons. I don't know how we will manage it. I really don't. I am heart broken for dd, and will have to figure out how to make this work for as long as it takes. At the moment, I am nervous and really upset. I am staying away from the other humans because I could easily rip their heads off with their stupid million dead, ten million sick but who gives a crap mind set.

 

I had Covid starting on May 5th and experienced something similar to your daughter. I am still not perfect by any means, but I can now do some laundry and cook simple meals. My stamina is gone, though, that's for sure. I was basically bed-bound for 3 weeks and felt like it would never end. Here is what I have done to get things moving in the right direction:

Vitamin c - 500 mg 2 or 3 times per day. This has had the biggest impact, by far.

Vitamin D - 5,000 iu/day (I tend to run low, so this is a good dose for me)

NAC - based on some research from the NIH this can help rebuild lung function 

Small bursts of activity - even if I could only do bed exercises at first. This is a big deal for rebuilding muscle and a bit of stamina. Once the vitamin C gave me a little energy back, I was able to do a bit more. You have to push a little, but not over do it.

Since she has joint pain,  you might add Curcumin for inflammation reduction. (I took Aleve every so often, and it helped.)

Now, on my fourth week (about 8 days into my regimen) I am starting to feel more normal. 

Best of luck to her!

Edited June 3, 2022 by Elona

[Laura Corin]

Interesting survey of viral persistence as possible cause of Long Covid 

https://www.theguardian.com/society/2022/jun/28/are-pockets-of-covid-in-the-gut-causing-long-term-symptoms?CMP=Share_AndroidApp_Other

[ktgrok]

On 6/1/2022 at 5:09 PM, TCB said:

I have changed my motivation for continuing to mask, despite being 1 of about 10 in my whole county who do, from being mostly to protect others to mostly to protect myself. I have so far escaped Covid and I would like the long term effects to be a whole lot clearer before I can relax. It’s hard to have that conversation though, because so many have already had it, and don’t seem to want to think about that aspect, and I can certainly understand feeling like that! I came across someone last week, in their 40s, whose heart function is extremely poor now and previous Covid is the prime suspect. These are hard times to live in.

My main symptom was cardiac - hoarse voice and postnasal drip that might have been allergies not Covid symptoms, and rapid heart beat. Given that my ex died of cardiomyopathy caused by a virus, that was scary. And how many kids don't have the words to describe "rapid heart beat" and have this issue and are missed?!?

On 6/1/2022 at 6:26 PM, dsmith said:

Those numbers are really scary, especially going through covid now. I have this desire to live super healthy when I'm back to normal (I eat probably 70 - 80% WFPB now) just to counteract any lingering covid issues, which I hopefully won't have. I am wondering if autoimmune diseases will be/are on the rise from covid. I've heard mention of new autoimmune disease post-covid but haven't looked for any studies or articles. Having 2, possibly 3 autoimmune diseases, I'm worried this may cause a new one to appear or cause an MS flare.

I know they were saying early on that Type 1 diabetes rates were going up in kids, at least doctors felt they were. Is that holding true?

On 6/2/2022 at 1:53 PM, Faith-manor said:

Not that she has reported. But she is not pushing herself either. A friend of hers is there today to do some things around the house, pick up a grocery order, and make sure the boys are doing okay. Probably the main thing is that if C is not tired and doesn't go down for a nap, she stays awake just for safety sake. I don't know if she is sleeping as much as she needs to in order to make strides. It is hard to tell from here.

Yup, the ones I know with long covid did not get enough rest - not through any fault of their own. But the level of rest needed it kind of crazy, and hard to let yourself take. 

On 6/2/2022 at 8:36 PM, Faith-manor said:

Bill, No worries. You are not expressing any dark thoughts I haven't already had. I appreciate all of the advice.

I told Dd a few minutes ago that she will do exactly nothing while I am there. Nada. I will bungee cord her to the couch if necessary.

Oh, also, she is tracking her pulse. She is former paramedic and is aware of the research so she has been on top of that from the beginning. So far it looks okay. She has four pulse ox monitors in the house, and when they all came down with covid, she made everyone wear them practically as accessories! 

I will say - some gentle stretching a few minutes once or twice a day might be worthwhile, to keep lymph flowing, and joints from getting more painful. I'd advise she wear a heart rate monitor while doing it, to make sure she isn't exerting herself - this should be easy movements, just to prevent blood clots forming, keep lymph flowing to clear cellular debris, and keep range of motion for joints as much as she can. Things like Cat/Cow pose, child's pose, some easy twists laying down, cobra, seated forward fold, etc...nice and easy. 

On 6/3/2022 at 12:16 AM, dsmith said:

 

For the first 3 days of covid, my resting heart rate was up 20 bpm, walking heart rate was up 10 bpm, blood oxygen was down 2 - 5% and my respiratory rate while sleeping was up 2 brpm. I got the notification for the resting heart rate the first day of symptoms and decided to check the rest last night. They've all started going back to normal as my symptoms have lessened. It would be nice if my watch would warn me that I may have covid, and maybe that will be a feature in the future.

Yup - same. Resting heartrate up about 12-15 bpm the first 3 days, plus spikes whenever I got stressed or stood/moved too much. So, read the news, spike in heart rate like I was working out. Stand up to fold laundry, spike in heart rate. Carry a tray of food up the stairs and it went as high as doing an aerobic workout. 

On 6/3/2022 at 9:48 AM, dsmith said:

Very interesting! I can't say I've experienced it previously with MS. Also, all of my major relapses have been after a virus in combination with stress and overexertion, so I'm planning on being extra careful for the next two months or so and will ramp it up with my dietary interventions. I've been trying to decide if my psoriasis/eczema is a little better or if it's wishful thinking. 

I do find that during the illness AI stuff is usually better, but AFTER it ends the AI stuff gets worse. 

[Faith-manor]

Update on dd, she is doing very well. Basically, the "I will bungee cord you to the bed and stuff your face full of nutrient dense foods, and you will do nothing thus saith your mother" method of parenting your adult child is working. Who knew?  😂

She has very little for activities back except she allowed to do all her reading and essay writing for her licensing course now that the brain fog is lifting. We are all home here in Michigan for now, it is a pleasant day, and she is sitting in the sunshine while my dear hooligans, oops I mean grandsons 😁, are in the wading pool, and jumping in and out to go help themselves to the contents of the fruit tray, the mango bits being quite popular!

Her heart rate is doing very well. Tomorrow I am taking them to the park to climb on the big structure there, and she is being allowed to go, and just hang out in a lounge chair.

I feel like I should get some sort of award. I haven't taught kindergarten in 20 years, and I swear these two are busier than my entire class of 23 - 5 year olds were! We are going camping, grownups only in August, and I am looking forward to it. If she still needs assistance, our eldest and his s/o have volunteered to go stay with them and wrangle the darling critters while we are gone.

[Spy Car]

46 minutes ago, Faith-manor said:

Update on dd, she is doing very well. Basically, the "I will bungee cord you to the bed and stuff your face full of nutrient dense foods, and you will do nothing thus saith your mother" method of parenting your adult child is working. Who knew?  😂

She has very little for activities back except she allowed to do all her reading and essay writing for her licensing course now that the brain fog is lifting. We are all home here in Michigan for now, it is a pleasant day, and she is sitting in the sunshine while my dear hooligans, oops I mean grandsons 😁, are in the wading pool, and jumping in and out to go help themselves to the contents of the fruit tray, the mango bits being quite popular!

Her heart rate is doing very well. Tomorrow I am taking them to the park to climb on the big structure there, and she is being allowed to go, and just hang out in a lounge chair.

I feel like I should get some sort of award. I haven't taught kindergarten in 20 years, and I swear these two are busier than my entire class of 23 - 5 year olds were! We are going camping, grownups only in August, and I am looking forward to it. If she still needs assistance, our eldest and his s/o have volunteered to go stay with them and wrangle the darling critters while we are gone.

You are my hero.

Bill 

 

 

[Ausmumof3]

3 hours ago, Laura Corin said:

Interesting survey of viral persistence as possible cause of Long Covid 

https://www.theguardian.com/society/2022/jun/28/are-pockets-of-covid-in-the-gut-causing-long-term-symptoms?CMP=Share_AndroidApp_Other

Very interesting.