Spoonseeker: Sadly, Covid-19 could just be the start of your problems.

[Countrygirl]

We are all aware of people who have had Covid who are experiencing a Post-Covid Syndrome. I have had one nurse phone me who developed it on a cruise a few months ago and has now been given a diagnosis of 'ME' by her GP.

You can read the experiences of people who are failing to recover on Reddit and their stories are so familiar to us, whether or not their syndrome will be ultimately classed as ME. They are finding that their doctors don't believe them and they are bewildered to find they are being referred to 'mental health' services. Already, the Bath clinic is gearing up and have stated that some people, those who are 'fearful', will fail to make a full recovery from Covid and develop CFS.

This morning Spoonseeker has posted an excellent article for the Post-Covid victims called Sadly, Covid-19 Could just be the start of your problems. It is long, but well worth reading.

https://spoonseeker.com/2020/05/15/sadly-covid-19-could-just-be-the-start-of-your-problems/

I know you have enough to worry about already with the pandemic situation the way it is, but there is something else important that you should know. The sad truth is that if you get COVID – 19 and survive, it could just be the start of your problems.

Ever since we first heard of this new virus, those of us who have experienced ongoing life-altering symptoms over many years following viral infection have feared that it would leave a great many more people in a similar condition to ourselves. It gives me no satisfaction whatsoever to report that this appears to be the way things are heading.

This thread from Reddit contains a distressing discussion between a great many previously fit and healthy young people who have all been left in a similar situation by COVID – 19, experiencing not the mild illness they were led to expect but a much more severe set of symptoms which, even after eight weeks or so, don’t seem to be going away.

As if this was not disturbing enough, they often find themselves treated with scepticism by doctors, who refuse to investigate their ongoing physical symptoms, referring them instead for talking therapies such as CBT (cognitive behavioural therapy) which are more usually associated with mental health problems. Employers, friends, and even family can often be equally disbelieving. “My mother has basically disowned me,“ reports one young man of 33. These people are finding themselves in a living nightmare and cannot understand the lack of concern.

“Why is the media focusing on mortality figures for the old and infirm when it should be educating on the potential long-term health risks to all ages?” asks Golden_Pothos, who starts off the thread.

Well, since I started writing this post, several mainly well-informed articles about the potential long-term effects of COVID – 19 have appeared and let’s hope more will follow, but the broader answer is that the media have conspired for some time with successive governments in downplaying the potential severity of chronic illness, the existence of which appears to be regarded not so much as a human tragedy but an expensive inconvenience. The government’s official terminology is carefully chosen to reflect this perspective. So we find that people aren’t paid ‘incapacity benefit’ any more but ‘employment support allowance’. The implication of the name is that if an illness doesn’t kill you, you will make a full recovery. All you need is support until you are well enough to return to full employment. This is the climate in which it is okay for people with undeniably progressive conditions such as Motor Neurone Disease to be sent for benefit assessments in case they have got better.

Unfortunately this perspective from the politicians is supported by the decades old beliefs of the medical profession itself, which over a great many years has tended to treat any new and novel condition not with curiosity but with scepticism. Epilepsy, motor neurone disease, multiple sclerosis, Parkinsons Disease, even stomach ulcers have been dismissed as ‘somatised’ conditions invented by the mind rather than real physical dysfunctions deserving investigation. In every case, as medical knowledge has progressed, these conditions have eventually been revealed as the physical problems they always were, but this hasn’t stopped the next new illness to come along being trivialised and dismissed in exactly the same way, the doctors seemingly unable to tolerate a situation in which real physical conditions exist which they don’t understand...................

It is worth reading the Reddit thread as it will resonate with so many of us as it is our story too. Here is one example:

I'm sick and tired of the dismissal by the general public!! M26/52 days never ending symptoms


Tested Positive - Me

I've been the sickest I've ever been in my life at this point. Please see my post history for a full run down of symptoms and progression but basically I'm still having lung attacks where I can't breath more than 20% capacity and my lungs feel like tire rubber. I'm also having neurological issues that have essentially left me feeling brain damaged. If you have an understanding of CFS/ME symptoms; that's what I'm dealing with.

I'm unable to do anything but look after myself day to day. My business has gone out the window. I can't manage to get out to do shopping at this point because I'm so dizzy/confused, physically weak and breathless.
Yesterday I asked my doctor for a CT scan referal as my lungs have got worse in the last week after not improving but staying stable for a while. 52 days and I'm still struggling to breathe like 'I can't talk, need to save my breath' can't breathe for hours on end. The doctor refused to refer me. Instead she would refer me to a 'medically unexplained illness clinic' ... essentially a mental health department with talking therapies. Sorry, since when was being unable to breathe through physical ailments medically unexplainable?

The UK is rife with a lack of understanding and diamisal. Comments like "if you're under 45 you're fine. You'll experience a minor illness". I'm 26 was previously working out 5x a week and counting my diet intake / macros. At a guess I'd say I was healthier than 70% of the general population in my age group so how can anyone assume long term saftey of any age at this point?

Why is the media focusing on the mortality figure for the old and the infirm when it should be educating on the potential long term health risks to all ages. Its leading to complacency in the younger demographic rather than adherence to self safety measures.

No, I dont want to breed fear, but a sense of blissful ignorance is not the answer; Ignorance of the situation is how we got so deep into this mess in the first place.
It's dangerous to minimise the severity of this illness for those infected who need support and validation to heal. It's also dangerous to encourage complacency in all ages in favour of a positivity bias. Alot of people here in the UK are behaving as if this is nothing more than a minor ailment, it's shocking.

I'm tired of being personally ignored and hearing all ages of people laugh or downplay the dangers of this illness for the young and healthy when I'm sat here looking at a life that will never be what it could of been before I got infected. They have no idea how lucky they are to have good health!
Is anyone else experiencing the same dismissal and disbelief from those around them?
Is anyone else still going on 8+ weeks dealing with this?

Edit: I wrote this yesterday morning. Over night last night, I'm pretty sure I had a heart attack. I have no idea how I survived what ever it was. Feel like I'd rather I didn't so I don't have to have another round of what ever that was.

It felt like boiling water being poured onto my heart. My heart now sounds like it's fluttering on some beats causing 3 contractions instead of 2. I can barely move but I'm scared to call for paramedics since when I did before they dismissed me and made me uncomfortable. No idea how I have made it through the night. The pain was like nothing I've ever felt before, would love access to some serious pain killers to make it a little easier.

 

[Wolfcub]

That is an excellent article. Thank you @Countrygirl
So sad....isn't it? And chlling. It seems that the only answer would be for some of the proponents of this misaligned "medical care" to get it themselves, and see what they make of it.

 

[lenora]

That is an excellent article. Thank you @Countrygirl
So sad....isn't it? And chlling. It seems that the only answer would be for some of the proponents of this misaligned "medical care" to get it themselves, and see what they make of it.

This is very sad, countrygirl. I have to admit that I wouldn't be able to sort one symptom out of another and had it happen to me about 2 wks. ago. I just put everything down to "my problems" and try not to think of them.

I'd been having trouble breathing off and on for about 2 days. I even asked my husband to bring down the vaporizer....I thought that would help. By the next afternoon, I was gasping for breath and couldn't take anything in, just a whistle came out on an expiration. I asked my hubby to call for an ambulance, but he couldn't understand me. I finally called for one myself and they managed to cut through the nonsense and were at my house in no time. Again, couldn't breathe and it was affecting the ribs (which I always have problems with) and my entire left side.

As it turned out, I had congestive heart failure; was in ICU for 3 days, where I was tested twice...both negative, and was then moved to the floor below to have stent surgery the following a.m. Bear in mind that you're alone in hospitals, nursing homes, etc., today. That didn't concern me as I'd had it twice before. I now have 5 stents and I honestly don't know if I'll recognize congestive heart failure again or not. It's not easy to sort symptoms out, that's for sure. By the way, I don't show if I'm running a fever or not....we're just a strange group. Yours, Lenora

 

[Wolfcub]

I'm sorry you got as unwell as that just recently @lenora ! I hope you are making some recovery from it now? CHF is really serious. Glad you got some help there.

Yes sometimes it can be hard to tell....is this the "old thing"....or is this something new? For a few weeks before I got classic coronavirus symptoms, I got some issues which were a lot like the ones I'd had in the beginning of ME/CFS. I took it to mean I was crashing....with a few small variations (i.e. a worse crash, and a revisiting of the initial symptoms, as usually crashes were not as bad as that.)

Now with hindsight, I am not sure if those symptoms were coronavirus, and for more than 3 weeks before the classic symptoms suddenly began. So were those respiratory/fever symptoms actually a "second wave"?? And I'd really had the virus for 3 weeks prior?

Now that goes to show how bloody rotten ME/CFS is. How that could be treated by exercise therapy or CBT I have no idea!!
(Spoken by someone who was happy to walk long distances before this began, and even now will try to get out for a walk, and being alone, has plenty of physical work to do about my place, so has no choice but to get on with it (or freeze all winter if I don't bring firewood in all summer). I am no stranger to "graded exercise therapy" !)

 

[lenora]

Wolfcub....Graded exercise is one thing, but bringing in a winter's worth of firewood is quite another. Please don't do what I did and just overdo things.

My "troubles" began last May, and I thought I had a fall from a 6" step in our garden. As it turned out, I didn't find out until the following January, but I'd had a seizure that makes far more sense since I was dazed and confused after it, don't remember going to the hospital for the wrist, surgery...or really anything. The seizures make sense of it all, and I'd been having them (unknowingly in my case) for probably a few months at the very least. Anyway, one major thing after another occurred, all different and I had to have extensive tests (some very unpleasant) for each visit. I understand they were looking for a spinal or brain infection and it may have shown up at anytime, still they weren't very pleasant and left me feeling crippled up.

This last bout with CHF was a surprise! I don't get upset about these things, but I have to say that having no air isn't great fun. Trust me, the hospital was the last place I wanted to return to and I'm sure they weren't exactly delighted to see me again. Funny thing is that to look at me I don't fit the profile of someone with heart disease in any way at all. Doctors are always surprised, but my father died at age 40 of a heart attack....poor man couldn't even walk across our l.r. floor at the end of it all. Nitroglycerin wasn't what it has become today. Rod's father died of a heart attacked at age 50, so I'd always been careful about our diet, which never stopped high cholesterol (me), high BP (me, again...although it's up and then way down), and then needing stent surgery. Yes, I was very fortunate and now it's all like a dream. I'm having a rougher time recuperating from everything that has gone on since the middle of Dec., but again....it is what it is. I'm spending a lot of time in bedclothes & Rod really doesn't mind at all. Lucky there, because I really like to stay up all day, if I can, and that helps.

I think about you and your dog and so wish you could take another one on. One that's trained and has lost a very special owner him/herself. Who knows, it may happen. On the other hand, you may not want to take on anything until you've proven that this coronavirus is way, way behind you (and we'll both have positive thoughts about that). Ultimately, I don't see anything other than every single one of us being exposed to it. Sure, we can stop it for a short time, but look at your own situation. You picked it up either from a package or groceries. Some people aren't even aware they're carriers, I have nothing against them; others know they have it, don't feel too bad and are out with everyone else...them I have a problem with. Still, by summer's end we'll all have reached exposure of some sort or another. Again, like Scarlett...."that's for another day." Stay well....please. Yours, Lenora (I really must take the time to proofread; it's called exhaustion).

 

[Countrygirl]

@lenora

That is a scary story! I am so sorry you had such a frightening experience, but am so glad you are back with us. I hope things improve for you. Wishing you the very best.

 

[lenora]

Countrygirl......Thank-you for your kind thoughts. It sounds (if I have this rightt,), and I may not. that you've been fighting a rather formidable foe yourself. How are you doing? I have also been concerned about Wolfcub, my two English gals!, and how you've been managing with the Coronavirus. I know that you're suffering about as much as we are here, and all economies are going to tank. I don't know why they keep on, on and on about that....it's a given and if we could change the course of it we would. Right now it's keeping the death toll down and recoveries up that we should be worried about.

I seem to recall that your pretty picture is a water lily of some sort or another, isn't it? We're into summer here and on days when it rains (like today) the day before can be rather brutal. I always felt my best in England, after I adjusted to it....and I think that's the secret of any place where you feel good. The weather doesn't keep changing and that makes a tremendous difference. We've been there in all months, you know the school years when everyone seems to be in one place at once, Xmas which was fine, but oh the cold soon after....I was never as cold in my entire life and we lived in Canada at the time, and my favorite, the springtime. You're probably at the tail end of it at this very moment, aren't you?

It's a great pity I couldn't have been sick in our hot mos. But I wasn't, although I may still be if this recovery thing doesn't pick up. I feel that I'm losing another year and they're all going by far too fast as it is.

Let me/us know how you're doing. Good thoughts and happy wishes are being sent from me to you. Yours Lenora. P.S. Stay healthier!!!

 

[knackers323]

It will be “interesting “ to see how many cases of CFS (they may call it something else) cases arise from Covid infections.

If Covid ends up infecting a large percentage of the world population then there could be a huge increase in CFS cases

 

[ruben]

I did say exactly this recently somewhere else on this site. And you'd then think it would result in massive research worldwide.

 

[IThinkImTurningJapanese]

I did say exactly this recently somewhere else on this site. And you'd then think it would result in massive research worldwide.

You've got a good point.

Beginnings of Post-Covid / Viral Syndrome?

My point was if numerous people who do get the corona virus are left chronically sick, as people with me/cfs have been for years, might this speed up research that benefits loads of us.

 

[IThinkImTurningJapanese]

I'm wondering if more research into ME/CFS might have benefited us when we face a novel coronavirus like this?

 

[lenora]

I'm sorry you got as unwell as that just recently @lenora ! I hope you are making some recovery from it now? CHF is really serious. Glad you got some help there.

Yes sometimes it can be hard to tell....is this the "old thing"....or is this something new? For a few weeks before I got classic coronavirus symptoms, I got some issues which were a lot like the ones I'd had in the beginning of ME/CFS. I took it to mean I was crashing....with a few small variations (i.e. a worse crash, and a revisiting of the initial symptoms, as usually crashes were not as bad as that.)

Now with hindsight, I am not sure if those symptoms were coronavirus, and for more than 3 weeks before the classic symptoms suddenly began. So were those respiratory/fever symptoms actually a "second wave"?? And I'd really had the virus for 3 weeks prior?

Now that goes to show how bloody rotten ME/CFS is. How that could be treated by exercise therapy or CBT I have no idea!!
(Spoken by someone who was happy to walk long distances before this began, and even now will try to get out for a walk, and being alone, has plenty of physical work to do about my place, so has no choice but to get on with it (or freeze all winter if I don't bring firewood in all summer). I am no stranger to "graded exercise therapy" !)

Hi Wolfcub.....I realized this a.m. that I never answered the middle part of your post. Yes, it's sometimes impossible to tell if we have something new coming along, an old resurrection or just what it all means. It's highly possible that you body was actually fighting off the coronavirus during the 3 wks. when you weren't feeling too good. I do hope that it wasn't a "second wave." As I read the numbers of people affected a second time, it really still seems to be up in the air as to whether or not it's a real problem that most of us have to be worried about. Personally, I'm of the opinion that with the way things are going, we're all going to be exposed by summer's end, no matter what we do, unless we keep self-quarantining. I do wish they'd come out with the simple, inexpensive test they've been promising...where in heaven's name is it?

Focus of yourself with good food, drinks and things that are good for your body. I understand your concern in a way that perhaps few people can....when is CHF going to visit me again. Will I be able to recgnize the signs and no, I'm not eating properly but I've had all this nonsense long enough to know that's the one thing we can do for ourselves that is really good. And the elusive sleep. Well, that departed so long ago that I can't even blame ME for its lack.

I truly hope your feeling stronger day by day....or as strong as possible. Yours Lenora.