To wonder why the fuck long covid isn’t considered a serious outcome

[Clutchingatfog]

Why is covid often only talked about in terms of hospitalisations or deaths? Even in determining whether we are eligible for vaccination, long covid isn’t factored in. Not vulnerable to covid? Are you kidding me?! Oh, you don’t factor in that vaccination reduces risk of long covid either? Got it. FFS.

Where is this fantasy land where people’s risk of LC doesn’t increase with reinfection, where people are magically spared if they are healthy, where kids don’t get it, where only people who are vaccinated/not vaccinated (depending on stance) get it, where only people who have severe cases get it, where long covid was something that used to happen earlier in the pandemic, where most people fully recover, where you are not left to rot. I want to move there!

If you have LC or now have to care for someone with LC, please tell me you understand where I’m coming from.

Indeed.

My poor DC sometimes has dysautonomia caused by the MCAS. Heart rate and breathing all over the place, BP drops well below 100 systolic, temperature control/sweating goes awry. In fact all autonomic control stops working properly. Standing for more than a few seconds can cause passing out.

Still there's always 'just push through it' I suppose...

To everyone suffering, I'm so sorry. And equally sorry that people who know nothing whatsoever about these conditions seem to think they have the answers (or dismiss the existence of any of these conditions). It must make it even worse for you all

You haven't heard of dysautonomia then Gloriia?

I’ve started working my way backwards on this thread.
The “pushing through” is dangerous for many with long covid. This is an example of something that should be much more commonly known by now. Even knowing it, it is really hard to adhere to. On bad days I “push through” to get myself to the toilet. There are people more severe than me that cannot do that. It’s awful that so many people found out what PEM was by living it.

The more you post, the more your ignorance in this subject is showing up.

Patients with CFS / ME / MCAS / dysautonomia can't just set goals and get going down the street. They need carefully graded exercise programmes.

It really is dangerous.

The consultant my DC is under sees patients from all over the world and sent DC to one of only 2 or 3 specialist testing centres in the UK.

After seeing the results, he made it abundantly clear that 'pushing through' isn't an option and a graded exercise programme is that only safe form of exercise. Not many people are fortunate enough to access these specialists, let alone the testing centres and may take advice from randoms on the internet a bit more seriously than they should.

Finding it stressful reading these posts from the ‘it’s in your head’ crowd- I agree with PPs that it’s a massive privilege if you’re able to think that way. Those kind of complacent views really make other people feel iller and more stressed. As a patient feel you have to justify your illness is real all the time. I feel very lucky to be able to blame most of my symptoms on a tangential condition I also have. Which isn’t constantly under suspicion.

My emotional state or my ‘laziness’ or whatever accusation, couldn't logically have given me fluid on my joints visible with MRI, skin rashes, POTS, Raynauds, let alone all the ‘invisible’ stuff like migraines for days and PEM just from trying to think too hard with brain fog or from getting stressed out by normal stressful life events. It’s not my lack of trying to get out and improve my life that causes me to take weeks to get over small transient infections that I see others around me shrugging off.

It wasn’t my choice to give up my busy productive life (in which I used to help other people for a living) and to have to live in a much reduced physically and socially and financially way. Not knowing when or if any of this will get any better is very scary.

So when I crash out with exhaustion after the walk, and extra stinky from being unshowered and then sweating, when do I shower? Should I just expect my family to endure my stink and also be unable to do my normal daily tasks? Would that be moving forward? You’re not from a hot climate are you @Gloriia? Going without showering for days might be okay in the chilly UK but not in a hot climate. I’m not self diagnosed. I’m medically diagnosed.

Thank you. I really hoped you weren't going to say yes, push through! That all makes sense. I do do some meditation. My nearest city is Exeter. I was offered an oxygen session at a clinic but it wasn't near the bus route and I couldn't face the drive in as I was too tired. I'm a lot better these days and I do pace myself but wish I could do more. Thanks x

Of course I’ve had an ECG, do you think I’m an idiot?! I’ve had numerous 24hr heart traces. As pp have said, dysautomnia is common with our conditions. Our autonomic nervous systems don’t work properly. It affects our heart rate, blood pressure, temperature (so for example I never get a high temperature, even when I had sepsis my temperature was normal), breathing, and our ability to sweat (most sufferers sweat excessively, I don’t sweat at all) and our metabolisms.

You’re just proving that you know nothing about our conditions.

@Gloriia What you don’t seem to understand (amongst many things it seems). Is that people with this level of fatigue have to choose between activities. So you’re saying go for a walk instead of showering. That also means go for a (very short walk) instead of making food, instead of doing a tiny bit of cleaning. It’s a constant choice. And the walk could be the thing that tips you over the edge and sets you back months.

Go read up on PEM.. please stop commenting on something you have no idea about. It’s ok to be ignorant but don’t chip in with your dangerous and misguided advice. Accept you don’t know enough about this condition and you are insulting those that do.

And for all those saying ‘oh don’t talk to me about fatigue, I had it that time after I was ill’. That is different. Did you have fatigue for years (some
people have ME/CFS for 25 years!!) you were tired for a few months. That’s normal after a serious illness and recovery tends to be normal and linear. You rest and get slowly better. This doesn’t happen with LCME/CFS. It presents very differently and can be very long lasting.

It’s ok not to understand this. I didn’t until I was affected. Nobody is asking for sympathy. Just don’t spout crap on these threads on a subject you know nothing about. It’s insulting and frustrating.

'Going without showering for days might be okay in the chilly UK'

I don't think its ok to go without showering for several days I'm just saying if a daily shower is stopping you making daily goals then it may be putting an unnecessary restriction on your activity? A shower every other day for many people is absolutely fine.

Anyway. As I've said I've had a serious illness with protracted recovery and I do know how challenging life can be. Motivation and positivity are hard to achieve but worth aiming for .

I do wonder if (and as I said before, I speak as a previous sufferer of post viral fatigue syndrome) a lot of the disinterest in long covid is that it doesn’t seem to be any different from any other post viral fatigue (which also frequently end in an CFs/ ME diagnosis) it doesn’t seem “special” the way the people who get upset about Covid not being taken seriously enough seem to want it to be. After all there are many virus’ causing PVF that we don’t spend time fearing or worrying about.

there is just no need to tell people to push though. Every fatigue sufferer knows they should do the maximum that they can to safeguard against further decline. But finding the maximum is hard and frequently we get it wrong and make ourselves temporarily worse. We just have to bugger on, one day at a time, acknowledging that each day might look different and things can change at any time .

I think the concept of pushing through makes the assumption that the condition (and may other immuno/chronic conditions) are linear. As many illnesses recovery is linear.

Unfortunately ME/fatigue/LC isn't and the biggest and most difficult aspect is finding your baseline which also has fluctuations depending on what you have managed.

Improving your baseline only occurs by very small increases in your energy window but also recognising what is high/medium/low intensity in everyday life is difficult. I improved my increasing my window by 1minute an activity it took a very very long time to be a "functioning human".

For me I know screens/focus/reading is a high energy activity so I only do it when I'm good. I work so a lot of my focus is taken up with work which leaves me in the evenings sometimes lying down by 7pm in a dark room with migraines, lead muscles and increase in pain. I'm able to do this because I have a very supportive DH who mucks in without complaint and takes over with the kids.

But someone who is bedbound has very little on the go and maybe using up more of their energy window then they realise flip side its incredibly hard in that situation and the thoughts of why aren't I getting better (as illness should be linear to us).

There is no magic wand, pill or treatment. It is all trial and error and it never stops. The biggest thing for me has been acceptance and working towards goals. Took me 2 years to ride a e bike with my children but I got there OK it was for 30 mins and then took half a day to recover but I got there.

My first goal was walking to the end of the street!

Again, @Gloriia - your experience of recuperation and rehabilitation from an illness does NOT make you an expert on recuperation from every illness.

This may come as news to you, but every illness is not the same, and recuperation/rehabilitation is therefore not going to be the same.

I have been doing long COVID specific physio (very gentle exercises) since January (paid for myself because the NHS has refused to help me), and my physical condition is no better than it was - in fact, in some ways I’ve gone backwards. I am carrying on because I trust my physio, and hope that, in the longer term, things will improve, but at the moment, I do feel worse.

@Gloriia Motivation and positivity? Go away. You recovered. You win. I’ll never recover. I only just started to live my life when I got CFS. To have had it this long means that statistically I’ll never recover.

@Bambamhoohoo I had hoped that Long Covid would lead to research and treatment for CFS. Sadly it doesn’t seem to have happened. It seemed promising initially but I guess the health industry got bored with fatigued people. Not exciting enough or social media friendly.

I’m sorry, that must be so difficult. He had the advantage of already being retired, so he could take to his bed whenever he needed to and do very little when he wasn’t in bed at his worst. Because you have to go to work, you won’t always be able to give your body rest when it needs it. Hopefully, you will get there though. 💐

Such a sanctimonious comment 😂.
I was 7 when I got ME after Glandular Fever with Pneumonia.
I was in the midst of a wonderful childhood, no issues mental health or physical health. No stress, trauma or distress.
Obviously not Peri menopausal.
I’m now in my 40s with the exact same symptoms (and some new ones with other diagnosis) but my condition has deteriorated over the last 20yrs. Mainly since starting full time employment.
I’m a positive, glass half full type.

It is absolutely galling to listen to the uneducated nonsense being spewed on here by people who once had an illness but are now better, giving their harmful non science based motivational tips to the rest of us.

We are not unmotivated. You have no idea of the planning, time, effort and money it takes to live this life and I can’t actually be bothered to waste any energy explaining it to you when you can Google.

We are not lacking in positivity. It’s difficult to be positive on the long term impact of your disability when there is little in the way of treatment. It is also difficult to be positive when we are treated so appallingly by strangers for simply existing 🤨.

You seem very unmotivated to actually do any research on the subject (from a reputable medical source not an author with an agenda).

People fear this type of diagnosis as it is random. It can strike anyone at any time. They want to blame the victim or something that the patient has done/not done to make it more palatable. Then they can tell themselves it will never happen to them. Well I sincerely hope nobody you love gets an invisible illness. I’d pity them. Thoughts and prayers 💐🙄

To all those with LC/ME/CFS reading this thread: Listen to the professionals. These are complex diseases and should be treated as such.

Recieving from a serious illness doesn't make anyone an expert in anything, not even the illness someone recovered from. It's just one individual experience. You've suggested people on here do something that could make them feel much worse and could have repercussions for days or weeks

As for motivation and positivity, for those poor people who have had even the most basic quality of life whipped away from under them and may be suffering with lifelong life-changing conditions, that's not necessarily attainable. Let alone any sort of solution.

Those saying IABU, what is unreasonable? When I was still able to work, I couldn’t just ignore swathes of information, why is it reasonable that those whose jobs involve public health policies can?

Thank you.
Long Covid ruined my health and life in 2021. It is genuinely offensive to me that our govt is STILL not warning the general public about long covid.
They know that it is disabling millions and also impacts children but they remain silent.

Hear bloody hear. 👏 I’d also venture that if @Gloriia is really so concerned for the wellbeing of others on this thread then she might want to refrain from putting people’s blood pressure up with the sort of patronising ‘solutions’ she’s still continuing to peddle.

You know if you reread my posts I've been polite throughout. We don't always have to like what others people say or agree with their opinions but there is no need fo4 this sneering and mockery.

I've been very ill myself, I also know plenty of people who have had prolonged post viral illnesses and it may be the inconvenient and clearly unwelcome truth on here but it is fact that setting small goals every day and pushing yourself really does aid progress and improvement. It's worth a try.

Did they or you have PEM?