Countrygirl
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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/
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
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.