Article A Look at COVID-19 Through the Eyes of ME/CFS

A Look at COVID-19 Through the Eyes of ME/CFS

by Jody Smith​

I have been self-isolating for over two weeks now. Not because of COVID-19. At least, not at first. Like many of you, I spend a great deal of time in my house because of ME/CFS. I was housebound due to a resurgence of ME/CFS symptoms since the beginning of March. And like many of you, I have hated being forced to stay at home and away from the outside world for extended periods of time. In my case, this has been going on for years.

Facing great uncertainty

Now, though there is an odd benefit to this experience of having been sidelined for such long stretches. Unlike many normally healthy people being faced with self-isolating, I know how to do this. I know that it is frustrating and limiting but oh yes! I know that it can be done.

I think with sympathy about those whose finances are in jeopardy, who aren't sure how they will manage, whose usual support systems are not available to them right now. I sympathize intensely because I have had much experience with this type of loss.

My household has had to start from ruins more times than I care to count after health catastrophes hit us where it hurt. It is terrifying. It is enormously challenging. There are not guarantees. The cost of things loom in giant numbers, haunting as the monsters kids used to fear under their beds or in their closets. But now these monsters are real.

How do we pay the bills? How do we get food? How do we care for our children?

Monumental dread. I know what that's like and nobody should have to live this way.

But the thing is, people do. People have in the past and will in the future. It can be done. It can be handled. Each person, each household must find their own solutions. They must learn what things they thought were essentials can be lived without. They must learn to do without. Ghastly. But it is doable. I know, we've done it. Repeatedly.

At my house in Ontario, Canada, we are pretty safe. My husband, my son and myself have all had health issues that have limited us for years. We don't go out much. A good deal of our life is a virtual life online. Thank goodness for the Internet!

How to maintain communication in this virtual life

I get it. You've been barreling along, juggling the many responsibilities in your life. Maybe a job, or multiple jobs, maybe a marriage, maybe children. Maybe a new business, satisfying hobbies, communities to which you belong. And suddenly, life as you knew it is over.

If you never had much need or time for your computer, if you've never had reason to explore what's available online, it's time to start! Life can be more than what you see inside your house. Make the most of your Internet access. And if you don't actually have it yourself, get it.

So much has been made free and accessible now because of self-isolation. Make the Internet your new and expanded home. There are so many possibilities to choose from.

You can join forums, and spread out on various types of social media. Keep up with people you care about via email. Start family threads, share photos and videos online. Tap into the free music available. Keep up on the news — but don't overdo it! Too much can be depressing. Balance that with some cat memes or something.

The Internet allowed me to make a living when working outside my home was impossible. I worked from my living room for seven years, writing and editing. Online relationships on forums and social media were full and satisfying. Work was interesting and I learned so much.

I have been cut off from the rest of the world due to illness both without internet access and later with it, and I'll tell you there is no comparison.

Living the virtual life has its drawbacks and they are many — but believe me, it's so much better than having nothing but your four walls ... and if you're lucky enough to have friends or family members there with you ... that's all you have. Countless people have been completely alone before the advent of the Internet ... that is mighty lonely, Jack.

It's good to see support and encouragement, information and offers of assistance blooming from every corner of the world as people come together in the face of the coronavirus. I've noticed that this recognition and activation is so very different from what I and my fellow sufferers of ME/CFS have been greeted with in the past. Not just recently but, well, forever.

But not so now. I've seen that within a matter of days in some areas, and a matter of weeks in others, people are in shock, saying "This is so hard!"

And I sit here in my housecoat these past couple of weeks with my ME/CFS symptoms flared up yet again, and say — A couple of days? A couple of weeks? Piece of cake. I could do that in my sleep.

And have. I've lived this way for months and years off and on. But you know, having had this experience has also created in me a great sympathy because I know what it's like.

If you are healthy and not sure how to do this thing day to day ... consider talking to someone you know who has chronic health conditions. You might be surprised at just how varied and effective their coping methods may be.

I have seen friends with ME/CFS post on social media, helpful hints and health suggestions for their global fellows who are being hit with this type of limitation for the first time and who are stupefied and stunned by it all.

Society in flux

I've had some time to think about what's been going on around the world. While my household is pretty self-contained and well-versed in self-isolation and not needing much of the outside world ... knowing that this outside world is not operating with its usual smoothness and dependability is unsettling.

While we have next to no social life most of the time, we have always known that as long as one of us can go to the grocery store what we want is always there. If we need something from the hardware store, or a doctor's appointment, we used to be able to take care of those things.

Now those things are not certain. Still First World problems thus far, but we are aware that ... everything is capable of coming to a stop. It's looking good so far where we are but knowing that we know that this could change, and change quickly. And it brings home for me a new appreciation for that outside world that we have always been able to tap into till recently.

One thing that has changed in my life because of the coronavirus is that I can't visit my 91-year-old father in his nursing home. It is only a six-minute drive from my house, and I have gone there several times a week for a few years now. But they're in lock-down and nobody can go visit him.

We had to cancel a party for some of our Birthday Boys this weekend for safety sake. Our daughter-in-law couldn't have joined us anyway because our son has been exposed to the virus and they are both working from home and counting the days, wondering if they will develop symptoms.

Jobs and children

Much of my family is spread out, half a continent away. We've always stayed in touch online, and are especially doing so now. I worry about all of them. Will the ones still working be able to continue? Should they? But if they must leave their jobs, financial concerns rise up.

What about my grandchildren? School has been cancelled for all of them across the country. Things began to come to a head here in Canada around the time of the normally scheduled March Break for all of them. This has given each family a few days to make major decisions and household adjustments. For that I'm grateful.

But there's now child care to consider. Daycare facilities are now closed down. Who stays home with the kids? What's to be done? Each family with children and working parents faces difficult challenges.

So even while we are relatively safe here at home, my extended heart, which is my children and grandchildren and my father, my brothers and their families ... there's a lot of turmoil and uncertainty.

We're all in this together

I hope you weren't looking for any great words of wisdom from me here. You won't have found any. I'm just looking around, musing on what I see. Sharing with my fellow shut-ins. And for the first time, this includes more than the chronically ill community. Now it's everybody in the world.

When I had to start living this way a couple of decades ago that was not the case. I was alone, and very few people were interested. But I was still able to do it. You will too.

If you have to be part of global self-isolation, there has never been a better time for it in mankind's history. And the entire world is in this with you, determined to meet the needs of those in isolation and bring back as much normalcy as possible, as quickly as possible.

How are you doing in this time of COVID-19?

Image by Free-Photos from Pixabay

 

Like you Jodi, I am quite used to self isolation. It also hit me this past couple of weeks that most people are going to find it incredibly hard to do.

You see, I don't live a life that they do. I live very simply and alone and have done for years. My "social life" consisted of chats and visits with my neighbour/friend, and a couple of other friends locally who visted me frequently, and I visited them.
That was enough for me. I wasn't basically interested in more than that.

Now it's not difficult to move that kind of social life to chats on the phone! Or over the garden hedge! And in fact there has been even more friendliness, with people passing by (at a safe distance) and engaging me in short pleasant conversations.

Owing to very unreliable food deliveries and empty shelves at the stores (so I heard. I haven't physically been in-store)and online grocery orders that can take a month to arrive, I decided to grow vegetables. I ordered seeds and items I needed from Amazon. It took a little more time for them to arrive, but they all came.
It will be a little while yet before there's food! Maybe late May at the earliest. But for anyone who has the energy to do that, it's a wise move. Even just growing some spinach, lettuce, or potatoes in pots will be helpful.

I was crashing, up and down anyway, but the "dig for victory" spirit got to me, and I continued to work, pacing it, to provide food for a few weeks' time and through summer. And it's given me another interest. I "mother hen" those little sprouting seeds, looking after them, watering, putting them in sunny places, and saying "good morning" to them !
Yes...paying the price, crash-wise, but it will pass I think when the Spring blends into summer. I always get hit badly in the Spring.

So all that, plus what is available online (including work here!) gives me little time to bother about being "self isolated".

But I do know it's a different story for those who are bedridden and alone in one room, and possibly dependent on carers or family members coming round to help. There may well be people like that here. My heart goes out to them indeed.

The whole UK is now in lockdown. We are meant to "shelter in place." Daily walks are allowed (not in close contact with people) but only essential services free to travel about, except for personal shopping trips for groceries and essential medical trips etc.
Shelter in place. For me it's no different to my ordinary life, as if I'm able to, I can go for a short walk in the fields nearby. But again, that is different for a single old person living in a high-rise apartment in a city. They will be really feeling it.

 

Like you Jodi, I am quite used to self isolation. It also hit me this past couple of weeks that most people are going to find it incredibly hard to do.

You see, I don't live a life that they do. I live very simply and alone and have done for years. My "social life" consisted of chats and visits with my neighbour/friend, and a couple of other friends locally who visted me frequently, and I visited them.
That was enough for me. I wasn't basically interested in more than that.

Now it's not difficult to move that kind of social life to chats on the phone! Or over the garden hedge! And in fact there has been even more friendliness, with people passing by (at a safe distance) and engaging me in short pleasant conversations.

Owing to very unreliable food deliveries and empty shelves at the stores (so I heard. I haven't physically been in-store)and online grocery orders that can take a month to arrive, I decided to grow vegetables. I ordered seeds and items I needed from Amazon. It took a little more time for them to arrive, but they all came.
It will be a little while yet before there's food! Maybe late May at the earliest. But for anyone who has the energy to do that, it's a wise move. Even just growing some spinach, lettuce, or potatoes in pots will be helpful.

I was crashing, up and down anyway, but the "dig for victory" spirit got to me, and I continued to work, pacing it, to provide food for a few weeks' time and through summer. And it's given me another interest. I "mother hen" those little sprouting seeds, looking after them, watering, putting them in sunny places, and saying "good morning" to them !
Yes...paying the price, crash-wise, but it will pass I think when the Spring blends into summer. I always get hit badly in the Spring.

So all that, plus what is available online (including work here!) gives me little time to bother about being "self isolated".

But I do know it's a different story for those who are bedridden and alone in one room, and possibly dependent on carers or family members coming round to help. There may well be people like that here. My heart goes out to them indeed.

The whole UK is now in lockdown. We are meant to "shelter in place." Daily walks are allowed (not in close contact with people) but only essential services free to travel about, except for personal shopping trips for groceries and essential medical trips etc.
Shelter in place. For me it's no different to my ordinary life, as if I'm able to, I can go for a short walk in the fields nearby. But again, that is different for a single old person living in a high-rise apartment in a city. They will be really feeling it.

Wolfcub,

Sounds like you've found some ways take a little control over some things in your life. Planting seeds is a good one It will take awhile to get your reward but that won't matter when your harvest comes

Life from our perspective is certainly different from the healthy ones now face with isolation. In many ways it is oddly easier for us. We already know what to do. Take care!

 

Well Jodi, since my above post at the end of March, I have travelled through Coronavirus infection myself.

What concerns me now is -so many hitherto "healthy" people are reporting ME/CFS-like symptoms, after weeks, a coronavirus which just won't go away, and a lot of post-viral fatigue.

In my own case, I have been very very lucky and appeared to make a good recovery from the more dramatic (respiratory) symptoms.
I do still have some mild lingering GI symptoms from it. But some aspects of my ME/CFS have actually improved at times Coffee and alcohol tolerance for example. And when I'm "good" on many days so far I feel a better general energy than I did before. The one other lingering effect is a feeling of more sleepy tiredness in the evenings, and often fall asleep for a few minutes after dinner. But that's not unpleasant.

Which is all bizarre and I do not understand it, but am grateful.

The GI symptoms are not too bad, but they are obviously (I think...) a lingering effect of the virus as they were not there generally prior to it. (with the exception of about 2 years ago when I had a week or two of disturbance like that)

It seems that some of those previously "healthy" people have worse after-effects than I have had, which is very strange. To be honest I expected it would greatly worsen my condition and wanted to avoid it at all costs....but that didn't work out.

I can't say catching Covid-19 will work out that way for everyone. It appears to be unpredictable.

I hope you are doing well Jody?

 

Well Jodi, since my above post at the end of March, I have travelled through Coronavirus infection myself.

What concerns me now is -so many hitherto "healthy" people are reporting ME/CFS-like symptoms, after weeks, a coronavirus which just won't go away, and a lot of post-viral fatigue.

In my own case, I have been very very lucky and appeared to make a good recovery from the more dramatic (respiratory) symptoms.
I do still have some mild lingering GI symptoms from it. But some aspects of my ME/CFS have actually improved at times Coffee and alcohol tolerance for example. And when I'm "good" on many days so far I feel a better general energy than I did before. The one other lingering effect is a feeling of more sleepy tiredness in the evenings, and often fall asleep for a few minutes after dinner. But that's not unpleasant.

Which is all bizarre and I do not understand it, but am grateful.

The GI symptoms are not too bad, but they are obviously (I think...) a lingering effect of the virus as they were not there generally prior to it. (with the exception of about 2 years ago when I had a week or two of disturbance like that)

It seems that some of those previously "healthy" people have worse after-effects than I have had, which is very strange. To be honest I expected it would greatly worsen my condition and wanted to avoid it at all costs....but that didn't work out.

I can't say catching Covid-19 will work out that way for everyone. It appears to be unpredictable.

I hope you are doing well Jody?

Wolfcub

I'm glad it wasn't worse for you. Scary stuff! It is odd that you would be hit less hard than "healthy" people but then everything about ME is odd. I know that when I was at my sickest for years, I didn't get colds. Or I'd have cold symptoms for maybe a day and then they'd disappear. Sometimes they were replaced by a crash unfortunately but other times my cold would just disappear.

I am doing well. Thank you for asking. I haven't been in contact with anyone outside of family for 2 and a half months, other than one necessary and quick trip into the bank. And that was 6 weeks ago. My husband does all the stuff "out there" and keeps it to a minimum. We can get groceries by ordering online and having a personal shopper at the store just load everything in the trunk. No contact.

Stay safe Wolfcub! I know it's a bit late and after the fact for you but from here on ... stay safer!

 

I am doing well. Thank you for asking.

That is very good news. Keep it right there

We can get groceries by ordering online

That is also great news. Here only the "medically vulnerable" qualify for online orders (or did) And I didn't fit into their list of categories, as had none of those diseases listed !

However fortune has been good to me and I have managed to snap up online orders which were just "floating free" -enough to use as stepping stones to get through the lat 2 months I paid a tiny bit more for delivery...but what the heck -eh?

I know it's a bit late and after the fact for you but from here on ... stay safer!

Thank you. You too Jodi.
I am still not clear about how immunity works for those who've had the virus. Are we lifetime immune? Immune for a limited time?

 

Are we lifetime immune? Immune for a limited time?

Lifetime immunity is unlikely. Opinions vary- anything from a few months to a couple of years but it's not been around long enough to tell for sure.

 

That is very good news. Keep it right there

That is also great news. Here only the "medically vulnerable" qualify for online orders (or did) And I didn't fit into their list of categories, as had none of those diseases listed !

However fortune has been good to me and I have managed to snap up online orders which were just "floating free" -enough to use as stepping stones to get through the lat 2 months I paid a tiny bit more for delivery...but what the heck -eh?

Thank you. You too Jodi.
I am still not clear about how immunity works for those who've had the virus. Are we lifetime immune? Immune for a limited time?

Hi Wolfcub

Well thank goodness you can get groceries. I hope things get more stable for you soon. As to immunity? Who knows???

 

Hello Jody & Wolfcub.....I hope you don't mind that I "eavesdropped" on your conversations. First off, Jody, thanks for all the really good work you do in the writing and the subject matter of so many things. Where in Ontario do you live? We lived in Toronto for about 12 yrs., and have been in Dallas for 42. My husband is from England, and I'm American by birth.

The specialists in Toronto have become better over the years. I have 3 other neurological conditions and nothing was known about them. I helped form Support Groups for anyone with this; I had nothing to do so spent my time setting up these groups, getting information about the condition(s) from doctors, informing people and helping them with their disability battles within each state. I never received a cent because at that time you have to prove you were blind!! A lot of this was done by phone b/c computers were very expensive and, as you know, a lot of people couldn't afford them. I spent a fortune on long distance calls & then I started hearing from people all over the world who were starved for any information whatsoever. I didn't mind but I became very, very ill and had to take years off. I'm still having other problems, but then a lot of them are age related...or so I think. There were no doctors who knew about my other conditions in Toronto, but today there are a number of them....that's gratifying, especially for Canadians.

Wolfcub, no wonder you were delighted with your garden of delights. I used to grow potatoes, we even grew plenty of greens, but tomatoes just don't like growing here. Still, many farmers are able to, I think it was the location and unless we wanted them on the front lawn, there was any other space with the right sun load eat the time. We also grow and eat plenty of herbs here. I love seeing anything that grows as it pokes through the soil searching for the sun. You can grow nice things in both Ontario and England. Gardening is a different breed in TX, although we're both gardeners and I do so miss those days.

I'm glad I found this today, and I'd like to compliment both of you as the fine, talented women you are. We have to hope that the virus is a true thing of the past for Wolfcub and Jodi, I hope you and the rest of your family stay as healthy as possible. You do add a lot to this site. Yours, Lenora.

 

To me COVID is a life/death situation - even though Wolfclub got thru it - I doubt I would, because I am so severely sick now

It seems that the biggest risk factor is for those who have diabetes @starlily88 and looking on the positive side some very old unwell people have recovered from covid.

 

@starlily88....I wondered what happened to you. I'm sorry you've been so unwell; you must feel exhausted and all alone.

I did have a list of movies for you, but will give you a quick one on Neflix....it will at least keep you going for a few afternoons/evenings: DIRTY JOHN season 1. Notice I said season 1, because season2 is still being made and coming out weekly. I don't even know if it's being show yet. That's called DIRTY JOHN BETTY...and it's a true story about the Betty Broderick case , and comes out weekly. At least you an watch the first 3 episodes, I would think. I don't know if season 1 is true or not, but Connie Britton (?) is the star.

I hope the above is what we saw on Amazon Prime USA. I know you don't get Amazon, so I thought of you when I saw it on Netflix. Good luck with it.

I was hospitalized with COVID-like symptoms just this past April. I've been constantly hospitalized for the past year, and it's getting a little old. Like you, I kept thinking I didn't have COVID (which I didn't, by the way), but did have a nasty cough that I still have off/on, and trouble breathing. For the most part that has passed, although at the time I could hardly squeak any words out because of pain and trouble breathing. I also have rib problems on m l. side. Very painful and I haven't been to properly breathe for 30++ yrs. or so. Anyway, I thought it was all old stuff just aggravated and did nothing about it. And then I simply couldn't breathe, no matter what. That's when an ambulance was called & I spent 3 days in ICU while they did the tests. All were clear and I was moved to a room. I was taken for surgery the next a.m., and had two more stents implanted (I now have 5). To say I have a lot of problems is an understatement....I can't even think of them all, and really don't want to.

I don't know what you can do about loneliness, it's difficult and we're fortunate to have a porch where people can come in the back gate and sit 6' away. That's great & at least we can still visit the many widows we know...who are extremely lonely during this time. No matter what we do, I'm convinced we'll all be exposed to it by summer's end. How can we not? I don't think, from the sound of it, that you're in any worse shape than I am. I do also have bronchitis...but get that every year. This doesn't include any of my multiple neurological conditions. There is no doubt that I feel better if I'm optimistic; and that's not meant as a put-down. It's just that the other side is so dark and I don't want to dwell there. My husband does have his own businesses and volunteer work...and I'm glad. But loneliness is a feature of my life. It doesn't feel good and I wish you had some friends whose sole concern seems to be their husbands. We need "girl talk" about movies, relationships, family, etc.

I have Congestive Heart Failure and have seizures (from something supposedly rare called Autoimmune Encephalitis) that has left me with no immune system, and have also affected my cognitive abilities and left me unconscious for 2 days at a time. I have to watch them (as does my husband) at all times now. I'm just hoping it's been one of those years and things will settle down again. I haven't been out anywhere since the beginning of Dec., except doctor's appointments of course. I really dislike being in the hospital and this last time I couldn't have anyone, including Rod and our daughters. That's fine, you'd be surprised at how fast the time went...take along magazines if you can't concentrate, catalogs, and if you can concentrate, plenty of books. But as we've mentioned before, I'm a reader and I'm finally really getting back into the level I like to be at. I buy all books new and will continue to do so. After having been a nurse I'm a real stickler for germs...viruses, bacterium, etc. My biggest expenditure, but now my husband has taken to reading them...a big surprise. He reads, yes, but it used to be only business magazines, which I also like, but there is only so much time.

I hope things improve for all of us, @starlily88. Summer's here, so you should have some fine days for just people watching over a cup of coffee or something. I hope so...feel better soon. Yours, Lenora.

 

Hi Jody....I wouldn't do this without asking you, but I was wondering if I could directly ask people what they're doing for fun during the COVID crisis. I have a column & thought this was be a good subject. I'm glad you did this one....those of us truly impacted have been able to get something out of it. Also, thanks for your many other columns. They're time takers, but are appreciated. Let me know@Lenora. If you think it's too close to yours, just say. Thanks, Jody. Yours, Lenora.

@starlily88 I forgot to tell you that I also had 2 teeth that had to be removed b/c of severe infection. I did recover, was on strong antibiotics and even my stomach has settled into its usual IBS routine. Nothing seems to change it and it's been way over 50 yrs. now. But your mouth will heal, but give it time. You must be feeling very forlorn and I'm sorry that you're in the position you're in. A great way of making soups more nutritious is to cut up fresh veggies such as carrots & celery (including some greener) and anything else you want...cook them in the microwave 7-8 min. for 3 c.. of each. I then add them to soups before heating them in the microwave. I have to watch my salt intake...but make sure I have some, so the soups are carefully watched. You are then getting extra vitamins and fiber. I believe we're at least the same age, or perhaps I'm older (73) . Spend as much time outside as possible...I do even if it is on the back porch. Feel better soon. Yours, Lenora.

 

@starlily88 ,@andyguitar.......I'm in probably the highest risk group with my Autoimmune Encephalitis, Congestive Heart Disease and so many other things I don't even think of them. Personally, I think we're all going to be exposed to it by summer's end no matter what we do. Unless an entire population follows the same set of rules, meaning wearing masks, staying home, not going to crowded beaches, etc., it's going to break down somewhere along the way. I can see it happening already and all we can do is our very best. I refuse to worry about one more thing. I'll do what's right to protect myself and others, but the same courtesy is not being returned. Whatever happened to people doing the right thing simply b/c that's what it was? I've already had 2 COVID tests...both negative. I'm sorry about the death of your cousin. That's just plain sad. @starlily...did you get my message about the series that I sent to you yesterday? I'm sure you did & I hope you found it. Yours Lenora.

 

@starlily88....I wondered what happened to you. I'm sorry you've been so unwell; you must feel exhausted and all alone.

I did have a list of movies for you, but will give you a quick one on Neflix....it will at least keep you going for a few afternoons/evenings: DIRTY JOHN season 1. Notice I said season 1, because season2 is still being made and coming out weekly. I don't even know if it's being show yet. That's called DIRTY JOHN BETTY...and it's a true story about the Betty Broderick case , and comes out weekly. At least you an watch the first 3 episodes, I would think. I don't know if season 1 is true or not, but Connie Britton (?) is the star.

I hope the above is what we saw on Amazon Prime USA. I know you don't get Amazon, so I thought of you when I saw it on Netflix. Good luck with it.

I was hospitalized with COVID-like symptoms just this past April. I've been constantly hospitalized for the past year, and it's getting a little old. Like you, I kept thinking I didn't have COVID (which I didn't, by the way), but did have a nasty cough that I still have off/on, and trouble breathing. For the most part that has passed, although at the time I could hardly squeak any words out because of pain and trouble breathing. I also have rib problems on m l. side. Very painful and I haven't been to properly breathe for 30++ yrs. or so. Anyway, I thought it was all old stuff just aggravated and did nothing about it. And then I simply couldn't breathe, no matter what. That's when an ambulance was called & I spent 3 days in ICU while they did the tests. All were clear and I was moved to a room. I was taken for surgery the next a.m., and had two more stents implanted (I now have 5). To say I have a lot of problems is an understatement....I can't even think of them all, and really don't want to.

I don't know what you can do about loneliness, it's difficult and we're fortunate to have a porch where people can come in the back gate and sit 6' away. That's great & at least we can still visit the many widows we know...who are extremely lonely during this time. No matter what we do, I'm convinced we'll all be exposed to it by summer's end. How can we not? I don't think, from the sound of it, that you're in any worse shape than I am. I do also have bronchitis...but get that every year. This doesn't include any of my multiple neurological conditions. There is no doubt that I feel better if I'm optimistic; and that's not meant as a put-down. It's just that the other side is so dark and I don't want to dwell there. My husband does have his own businesses and volunteer work...and I'm glad. But loneliness is a feature of my life. It doesn't feel good and I wish you had some friends whose sole concern seems to be their husbands. We need "girl talk" about movies, relationships, family, etc.

I have Congestive Heart Failure and have seizures (from something supposedly rare called Autoimmune Encephalitis) that has left me with no immune system, and have also affected my cognitive abilities and left me unconscious for 2 days at a time. I have to watch them (as does my husband) at all times now. I'm just hoping it's been one of those years and things will settle down again. I haven't been out anywhere since the beginning of Dec., except doctor's appointments of course. I really dislike being in the hospital and this last time I couldn't have anyone, including Rod and our daughters. That's fine, you'd be surprised at how fast the time went...take along magazines if you can't concentrate, catalogs, and if you can concentrate, plenty of books. But as we've mentioned before, I'm a reader and I'm finally really getting back into the level I like to be at. I buy all books new and will continue to do so. After having been a nurse I'm a real stickler for germs...viruses, bacterium, etc. My biggest expenditure, but now my husband has taken to reading them...a big surprise. He reads, yes, but it used to be only business magazines, which I also like, but there is only so much time.

I hope things improve for all of us, @starlily88. Summer's here, so you should have some fine days for just people watching over a cup of coffee or something. I hope so...feel better soon. Yours, Lenora.

Thank goodness you didn't have covid and way to go to come out of your stent surgery

 

I believe I had coronavirus about seven weeks ago. This is an assumed diagnosis because of the match between symptoms, course and duration (ie. sense of smell greatly diminished and other CDC symptoms) . I have ME and lupus (SLE), disabled. My immune status is good though a bit inhibited due to taking immunosuppressant for the SLE (methotrexate). I noticed in the news reports that the bad covid patients were those with high inflammation in the lungs. Knowing that diet and gut flora set your baseline inflammation level, I looked at the covid infection map and noticed that countries that ate Asian style diets (low red meat, no GMO grains, fish and vegetables) had half the death rate I decided to tweak my diet to a low inflammation one by limiting red meat, sugar, GMO grains (Roundup), commercial animal foods (fed Roundup pesticide) and hemp oil for extra omega 3 fat. When I contracted the illness I doubled my vitamin D and ate a lot of vegetarian meals because that is what I felt best on (higher energy). I also control inflammation with curcumin and take a pro-apoptosis regimen of supplements which I continued. Covid lasted 2 weeks then I was reinfected and ill for about 4 weeks before returning to my normal baseline. I estimate temporarily losing about 25% of my lung function based on shortness of breath and overall fatigue but I didn't need supplemental oxygen, just a lot of rest. After the illness passed I didn't have any more problems catching it again so I assume I'm now immune.

 

But the thing is, people do. People have in the past and will in the future. It can be done. It can be handled. Each person, each household must find their own solutions. They must learn what things they thought were essentials can be lived without. They must learn to do without. Ghastly. But it is doable. I know, we've done it. Repeatedly.

Glad it worked out for you, I couldn't keep a job just to pay for food and rent. If not for my family, I'd be dead.

 

Glad it worked out for you, I couldn't keep a job just to pay for food and rent. If not for my family, I'd be dead.

Hi Crowtor,

And you have brought in the balancing truth. Thank you for doing that. Because you bring the reminder that not everyone is as fortunate as I am. If I had only myself to turn to I would also be dead by this time.

I am lucky to have my husband and son who live with me, other children who care about us, and a few family members who keep an eye on us. I'm lucky to have the puzzle pieces within reach in order to be able to make our small world function. I remember years when the quiet little life I have now was something I could only aspire to, and hope against hope we might one day get some relief.

I'm glad your family is there for you too Crowtor.

 

Hello Jody & Wolfcub.....I hope you don't mind that I "eavesdropped" on your conversations. First off, Jody, thanks for all the really good work you do in the writing and the subject matter of so many things. Where in Ontario do you live? We lived in Toronto for about 12 yrs., and have been in Dallas for 42. My husband is from England, and I'm American by birth.

The specialists in Toronto have become better over the years. I have 3 other neurological conditions and nothing was known about them. I helped form Support Groups for anyone with this; I had nothing to do so spent my time setting up these groups, getting information about the condition(s) from doctors, informing people and helping them with their disability battles within each state. I never received a cent because at that time you have to prove you were blind!! A lot of this was done by phone b/c computers were very expensive and, as you know, a lot of people couldn't afford them. I spent a fortune on long distance calls & then I started hearing from people all over the world who were starved for any information whatsoever. I didn't mind but I became very, very ill and had to take years off. I'm still having other problems, but then a lot of them are age related...or so I think. There were no doctors who knew about my other conditions in Toronto, but today there are a number of them....that's gratifying, especially for Canadians.

Wolfcub, no wonder you were delighted with your garden of delights. I used to grow potatoes, we even grew plenty of greens, but tomatoes just don't like growing here. Still, many farmers are able to, I think it was the location and unless we wanted them on the front lawn, there was any other space with the right sun load eat the time. We also grow and eat plenty of herbs here. I love seeing anything that grows as it pokes through the soil searching for the sun. You can grow nice things in both Ontario and England. Gardening is a different breed in TX, although we're both gardeners and I do so miss those days.

I'm glad I found this today, and I'd like to compliment both of you as the fine, talented women you are. We have to hope that the virus is a true thing of the past for Wolfcub and Jodi, I hope you and the rest of your family stay as healthy as possible. You do add a lot to this site. Yours, Lenora.

Hi Lenora

I don't know how I managed to miss this and other posts of yours here. I only stumbled upon them today. My apologies! I'm in southwestern Ontario so several hours from where you used to live.

Thank you for your kind and encouraging words. I must say, from what you described, you have put yourself out there despite substantial challenges and worked hard to make a difference for as many vulnerable people as possible. Well done.

Jody

 

Hi Jody....I wouldn't do this without asking you, but I was wondering if I could directly ask people what they're doing for fun during the COVID crisis. I have a column & thought this was be a good subject. I'm glad you did this one....those of us truly impacted have been able to get something out of it. Also, thanks for your many other columns. They're time takers, but are appreciated. Let me know@Lenora. If you think it's too close to yours, just say. Thanks, Jody. Yours, Lenora.

Hi Lenora

No need to ask me anything. I hope you didn't wait for my permission since it's been so long since you wrote this to me. I hope you went ahead with it!

Jody