You do NOT want my life (don’t risk getting post viral illness)

This post was originally written as the UK removed Covid restrictions and headed towards the so-called “Freedom Day” of 19th July 2021. At that time, the Delta variant was the latest worrying variant, we were still trying to get all adults double vaccinated, and we were yet to roll out a vaccination programme for children. The post has been updated on 21st February 2022 to account for the changes that have taken place since that time, as the UK government makes yet another pivotal decision about removing the remaining preventative measures such as isolating when testing positive.

Ever since the Covid pandemic started, people with a variety of post viral illnesses have been desperately trying to warn the world that another pandemic would be inevitable – a chronic illness pandemic. It didn’t take long for patients who had recovered from their initial illness to begin noticing that they simply weren’t getting better as expected. For instance, the wellness collective Body Politic launched their Covid-19 Support Group as early as March 2020, and the term Long Covid is now a term that everybody is aware of.

And yet there still seems to be this complete disconnect between knowing that Long Covid exists and understanding that it could affect anybody at any time. We’re still stuck in the narrative that “only those who are already vulnerable will suffer from severe illness or lasting problems”, which is completely false and incredibly ableist. Many people with any form of post viral illness will tell you that before getting ill they were fit and healthy. All it took was one single virus to do something to their body and that was it, game over. You don’t even need to be severely ill to trigger post viral illness – my own was triggered in 2015 following what I thought was just a simple cold that I continued to work through.

Right now the UK is setting up to remove the remaining preventative measures in place, including both the legal requirement to isolate when you test positive for Covid (which has already been reduced in time anyway), and the availability of free tests. Both of these are going to have a huge impact on the spread of Covid within the population, it doesn’t take a genius to work out how! And we’re doing this shortly after a massive increase in the number of cases over the past couple of months, when it felt like everybody was getting it, especially anyone with kids in school. The Omicron variant, though seemingly milder than other variants have been, ran rampant through the population even with people testing and isolating. What will the next variant be like without those precautions in place?

Now I’m not even going to go into the impact of this is for those of us who are already ill and want to continue testing and isolating – that’s a conversation for another day. This post is about why you should be concerned about this. Because whilst the government will tell you it’s okay as death rates are not as high as they once were, we’re past the worst and we need to learn to “live with Covid”, they are failing to show you the whole picture. An estimated 10-30% of people who catch Covid go on to develop long-term symptoms, and believe me when I tell you that the government will fail you time and time again once you become sick with a post viral illness.

The long-term impact of catching Covid and going on to develop Long Covid is almost impossible to explain. But I’m going to try. Because this is important. The last 7 years of my life have been hell in so many ways, and I do not want to see others having to discover for themselves just how awful post viral illness is. So let me paint a picture for you, in the hope that it might make you a little bit more wary and cautious whilst the threat is so high.

A day in the life of someone with post viral illness

Let me start by saying that it’s almost impossible to give you an exact “day in the life” example, because my symptoms vary significantly from day to day and even hour by hour. But if we’re taking as typical a day as possible, this is how it goes.

8-9am: I wake up, feeling rough. Maybe I feel nauseous, maybe my head hurts, maybe I’m dizzy. I might have pain in my hips and back just from laying down. I might feel like I haven’t slept a wink. In fact the latter is most likely to happen, because refreshing rest doesn’t seem to happen anymore, no matter how many hours I sleep. And insomnia is a huge problem these days too.

10am: I may finally feel ready to try and stomach some food. My partner gets my breakfast unless I’m having a particularly good morning in which I may be able to make it to the kitchen to pour a bowl of cereal before heading back to eat it in bed. Sitting at the table is too much effort.

11am: If I’m feeling like today is a good day I might have a shower. With my partner’s help, of course. Even sitting in the shower doesn’t guarantee I can do so alone. I need help with my hair. And getting out so I don’t slip, of course. Because I’m not so steady on my feet these days.

12pm: My partner will make me lunch. It might be as simple as a sandwich, using foods my body can tolerate, because digesting a large lunch may be beyond my body’s ability today. But if I can eat a cooked meal, this is when I will do so because later in the day will just leave me feeling awful all night.

1-3pm: On a “good” day I might do something fun. Like walk into my garden to sit and read. Or plant a few seeds/do some light weeding (in one spot, no moving around allowed). Or I might try something creative like writing or crocheting. But on many days these are beyond me and I need to rest up so that I have energy left for when my son comes home. So I’ll lay in bed, scrolling social media or listening to an audiobook.

3-7pm: My son is home from school, so I do what I can. Sometimes we’ll play a game whilst sitting on my bed. Sometimes I’ll make it into the garden to watch him play. Sometimes all I can do is lay there and listen to him having fun in another room. Those are the worst days.

7pm onwards: My son is getting ready for bed, so if I’m well enough I’ll read to him and spend time with him in his room. If not, I’ll be in bed listening to an audiobook and hoping I can sleep sometime soon myself. As I said before, insomnia is a big problem, and I can still be awake at gone midnight, regardless of how exhausted I am. Because my body cannot sleep. It’s dizzy, it’s in pain, I have restless legs or cramps, my stomach is churning, I have a migraine… the list goes on.

So, you see, my days are as boring as anything. I’m completely reliant on my partner to do pretty much everything around the house, and even then I still can’t always take care of things like showering myself. Just imagine, for a minute, that your life was reduced to this? And just remember how frustrated you have been by the restrictions put in place over the past couple of years. Imagine being even more restricted for 5 or 10 or even more years. Isn’t it worth being a little bit cautious now to avoid that possibility?

Things often get worse, not better as time goes on

Now I must explain that it wasn’t always this severe for me. My post viral illness began in 2015, but I was able to continue in part-time employment (with difficulty) until 2016, and in self-employment until the end of 2017. I only became housebound in 2018, and 2020 was my worst year to date in which a bout of the flu in January triggered such a major relapse I barely left my bed at all that year. I’m slowly recovering and I have to have hope that one day I might get back to where I was in 2017, but that’s not guaranteed to happen. This could be my baseline for years to come. And I have to accept that.

And this is so far removed from our usual experience of illness, where you get sick and then expect to recover over time. But this just isn’t true for post viral illnesses. You can spend years looking for answers as to why you are ill, trying different treatments and coping strategies only to find yourself getting worse. And the worst part is, you’ll reach a point where the doctors simply shrug their shoulders and basically say you just have to live with it. Because quite frankly they have no idea what is wrong with you – most people with a post viral illness will go through a multitude of tests run by a range of different specialists, only to be told that everything has come back “normal”. And when they run out of ideas, they just give up.

It didn’t have to be this way

Post viral illnesses have been around for decades. Or, rather, they’ve most likely been around for as long as we have, but we’ve been aware of post viral illnesses for decades. And yet nothing has ever really been done about it. The amount of funding that has been put into post viral illnesses is shockingly low. In a report made by the ME Association in 2016 they found that whilst the number of people in the UK with ME/CFS was estimated to be around 250,000 compared to 100,000 patients with Multiple Sclerosis, MS had received 20 times the funding that ME/CFS had. Just think about how much further we could have been in understanding how and why some people never get better and how to treat post viral illnesses had proper funding been put into place previously.

Instead we have an estimated 1.3 million people experiencing symptoms of Long Covid here in the UK, with 554,000 people still suffering from symptoms a year after their initial infection (this being people from the first wave – and with new cases every single day this number will continue to rise). And even more worrying is that we continue to talk as if children are immune to the more severe effects of Covid, and yet they are also suffering from Long Covid too. Yet we’re sending them to school, primary aged kids without masks, and the government has only just announced they are going to roll out the vaccine for 5-11 year olds in a “non-urgent” fashion. It’s hard enough being this ill as an adult, but the thought of losing your childhood to Long Covid? That’s just devastating.

But they’re setting up Long Covid Clinics, I hear you say. “Whoo hoo” (she says, sarcastically). But it’s very hard to imagine that they will be any better than the ME Clinics that focused heavily on Cognitive Behavioural Therapy (CBT) which ignores the very physical symptoms beind experiences, and Graded Exercise Therapy (GET) which has been disastrous for so many, leaving them more debilitated than they were at the start. In fact even when the NICE guidelines were finally updated to removed GET in the treatment for ME, its proponents are massively pushing for it to be used in Long Covid treatment. Because woe betide medical professionals actually listen to the lived experiences of the patients.

The impact of post viral illness goes way beyond the symptoms

So, not only are you sick. You’re also having to fight for recognition of what you’re experiencing by medical professionals who just don’t get it. And then, of top of all of that, you have the battle for financial security. And oh wow, are you in for a treat (*insert eyeroll here*).

If you manage to continue working, you may find you’re on reduced hours, which has an impact on your income. And if you have to come out of work, which a lot of people do, you’ll discover the sheer cruelty of the UK benefits system. Ask any person who has been chronically ill for any length of time and they will tell you of the dreaded brown envelope. Every time one of those damn things comes through your door, your heart plummets. Because the Department for Works and Pensions (DWP) really don’t care about people who are chronically ill. At all.

My partner and I have had to go to tribunal 3 times over Employment & Support Allowance and PIP. All 3 times we have successfully won our claim, although neither of us got the points we really should have for our PIP. For instance, my application was in 2018 when I was still able to walk my son to school once per week. By the time my tribunal rolled around in 2020 (yes, it took 2 years of waiting with no financial support), I was housebound and even bedridden at that point. But they could only assess me on how I was in 2018. And because I could walk my son to school once a week they decided I didn’t have any real mobility needs.

And therein lies the problem with PIP. It does not allow for any kind of fluctuating symptoms, which post viral illnesses, including Long Covid, have in abundance. If you can walk any distance at all, you don’t need help. Never mind the fact using a wheelchair might actually enable you to get out of your house more often. If you can cook a simple meal in a microwave each day, that’s fine, you don’t need help cooking meals. Ignoring that fact eating microwave meals each day reduces your nutritional variety whilst increasing your costs significantly.

And when they can’t knock points off, they’ll find a way, even if they have to lie. Yep, they lie. They wrote on my form I showed no sign of instability, despite the fact I had a huge bruise on my arm from falling in the bathroom the night before my assessment. And they wrote I showed no sign of joint stiffness, despite one of my conditions being hEDS which causes joint instability due to the joints being too flexible. Seriously, the whole process of sharing your life in the most intimate way – “my partner has to give me bed baths when I can’t make it to the shower” – is dehumanising and degrading. Traumatic, in fact. But to do all that and still have them lie and twist your words to avoid awarding you points? Well, you choose a word for that because mine aren’t suitable to share publicly!

And this is all before we get into the fact that if you’re married or cohabiting, your entitlement to benefits goes down significantly. There is a great article on the BBC about this, but it only just scratches the surface. Thea and I are both on disability benefits, but we aren’t allowed to claim ESA separately. Yet a joint claim is less per week than my ESA and Thea’s Carer’s Allowance (which is a measly £67 per week) combined. So yeah, if you’re in a couple you’re a bit screwed.

Post viral illness affects EVERYTHING

But it’s not just the financial impact, either. If you are part of a couple, you have to get used to your partner becoming your Carer. And nobody really wants that. It changes the dynamics massively. Don’t get me wrong, it can work beautifully. Thea and I have a wonderful relationship. But that doesn’t negate the fact our relationship is different to how it would be if I were able to look after myself. And if you’re not in a relationship? Well, a lot of people find themselves moving back home with their parents, because they cannot continue to live alone. And who wants hard won independence stripping away because they had the misfortune to get ill?

So you have to get used to being cared for. You lose your independence. You also lose a lot of your social life. Because quite frankly socialising is exhausting when you’re ill, no matter how much you love it. At my worst I’ve had to turn down friends offering to come and sit on my bed with me so I didn’t have to get up, because even the stimulation of talking to another person was too much. Imagine not being able to cope with someone else in the same room as you. I haven’t slept in the same room as my partner for two years now since my symptoms became so severe. And I hate it.

Then there is the judgement you’ll receive from others. Why can’t you just do this simple thing? Why have you not contacted them in a while? Why don’t you just try this treatment or that exercise or this supplement or that meditation? Why are you using a mobility aid when you can walk? Why are you using a disabled parking spot? Why have you become such a bore? And so on and so forth. Be prepared for all the unsolicited advice you can deal with (and more). And be aware that some people will simply stop talking to you, because you’ve changed and they aren’t ready to cope with that.

Getting chronically ill with a post viral illness affects every area of your life, and it sucks. You’re going to grieve for who you were before. You’re going to struggle with so much loss. You’ll have to fight for just the most basic of support. And it is exhausting! And let’s be fair, you’re already exhausted before you’ve even got out of bed in the morning. Life is stripped down to a bare minimum when you get sick like this, and whilst it is possible to learn to live with and even enjoy the simple joys in your life, it is a long and hard battle getting there. And you will always have days when you just can’t. Because who could?

We do not know the potential impact of Long Covid

One thing I want to make clear is that we do not know what impact Long Covid could have. Whilst we can compare it to other post viral illnesses that have come before it, there are some additional things to consider. Many people with Long Covid are not only experiencing the debilitating symptoms like fatigue, pain, and autonomic dysfunction that come with a wide range of post viral illnesses (e.g. M.E./CFS, Fibromyalgia, POTS etc) but they are also suffering from organ damage. This makes it even scarier than the post viral illnesses that have come before it.

And whilst there is some hope in the form of increased research funding and the ability to study huge cohorts of people who all got ill from the same virus, research takes time. There isn’t going to be a treatment or cure for this for a while yet, if ever. So if you catch Covid and go on to develop Long Covid, you’re in it for the long haul. Even if you’re one of those who recovers after a few months, even a few months of this is enough to break you, believe me.

So please. Please, please, please. Take this seriously. Continue to take precautions. Wear your damn mask. Wash your hands. Stick to social distancing guidelines. Keep testing. Isolate if you test positive. Yes I know it sucks. Yes I know we’re all fed up and want the world to go back to normal. But believe me, the alternative is worse. I’m not negating the mental health impact that all these restrictions have had on people.

I know how hard is it to feel trapped in your own home, unable to go out and see friends and family. I know this better than most. Because it has been my life for several years now. Moan about it all you like. Get it out of your system. Share how you’re feeling. That’s healthy. But please, don’t just ignore the risk because you want life to be normal again. Because by doing so you risk yourself or a loved one getting Long Covid. And nobody wants that. Least of all me.

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