Yesterday I woke up feeling well for the first time in what feels like forever. It was like remembering somebody I used to be.
Someone I’d forgotten I could be.
Someone who wanted to get up. Do things. Be a person in the world.
I first got Covid in March 2020. I’d met a friend in Soho the week before and was in bed with a bug, when I got a message from her saying that she’d been tested positive for this new virus. She hoped she hadn’t passed it on to me.
We didn’t have tests yet but she was travelling and had been tested on landing in a new country. Our lockdown started just after.
I recovered fine from that one. I didn’t have it bad. I wasn’t scared for my life or anything like that, and I recovered well enough to go for long walks in those strange sunny days when the world stopped. I did dance classes online. Yoga. I look back now and see that I was in good health.
Then it came back again and again. I tested positive for covid three times over the last few years and there was one more time when the test was negative but the symptoms were exactly the same: heavy, treacly limbs, sores in my mouth and the need to sleep for most of the twenty four hours.
After each round I got weaker and weaker. Life got harder. But I was also trying to write a book that was stressing me out, had no money which was stressing me out, was perimenopausal which was adding its own weird chaos to the mix and became depressed living alone in lockdown. I didn’t know what was causing what.
I called the doctor and got antidepressants. Then I called the doctor and was put on HRT. Then the doctor said it’s most likely long covid.
It was no unusual for me to wake up at seven, do some writing then have to go back to bed at 9.30 to sleep for another two hours. I’d wake up do a bit more, go back to bed later in the afternoon and so on. Some days I couldn’t go down to get the post without having to sit on the stairs to rest half way through. Some days I couldn’t finish changing the bed because my arms just couldn’t. I’d break out in a sweat and my heart would pound with any exertion - even standing in the shower was a push.
In desperation I started writing to an imaginary friend. Julia Cameron, who wrote The Artist’s Way, recommends an exercise where you write to ‘Guidance’ and ask for, well, guidance. ‘What should I do to get better?’ I kept writing in my notepad, and then I’d write on the next line whatever answer would come to me (apparently from Guidance but I guess also just my deeper wise self). Guidance kept telling me to rest. Month after month she was telling me to rest.
I can’t rest anymore, I said. All I do is rest. I need to earn money. Pay bills.
Rest, she said again.
But this is ridiculous, I’d write, nobody needs to rest this much.
Rest, darling, she’d repeat.
I got Covid again last September and from October 2023-January 2024 I hardly left my flat. All I did was sleep. And sleep. And sleep. I gave into it and at the start of the year I started to feel stronger.
The fatigue was still there but I could do things around it.
I could go places, get on trains. I even went away for a week to Greece, where a few weeks earlier even getting a train to the airport would have been impossible.
I started a job in July. I loved it. It took all my energy but I seemed to be able to do it if I slept all weekend and got in bed almost as soon as I got home.
But then a few weeks in I crashed. I was exhausted, in physical pain and on some days literally couldn’t see straight. My mouth felt everyday like it had a million little cuts in it - something called Covid mouth apparently. Sexy.
I was signed off work for six weeks and am now working two days a week from home. Yesterday was the first time I did a whole day without being in significant pain.
And so here I am, beginning again - I hope. But easy does it.
A common mistake with long covid is to get excited on good days and to do more than you should which sets you back again. I see that I have recreated this pattern over the last few years - but also my life.
I have always got ill. Ever since I was a child, I was the person who caught everything. I have had two periods of burnout in my late twenties and early thirties. On both occasions I quit jobs moved back to my mum and rested for a few months, before feeling better and doing it all over again.
I was always able to bounce back.
This time I have not been able to bounce back.
And finally I am realising this is a good thing.
A friend used to warn me that I was doing too much, pushing too hard. It’s like an elastic band, she said, you can stretch it a lot but stretch too far and you’ll snap.
I snapped the last few years. The elastic band is broken.
And again, I’m finally realising this is a good thing.
I don’t know why I need to do everything with such intensity or push everything so hard - especially work. It’s like if I’m not bleeding, I’m not giving enough. Even in my lovely job now - where my boss could not have been kinder in terms of saying ‘We just want you to be OK, do whatever you need to be OK’ - I feel guilty when I’m not giving 120 per cent.
A couple of weeks ago I was in so much pain at my desk, even after taking painkillers, that I went out to the supermarket to get a bottle of wine and drank two glasses just to get through the last couple of hours of the day. Nobody would have expected me to stay at the desk in pain like that but I did. I have an inner slave driver and she is a total bitch.
This has to stop. It’s no way to live.
I spoke to a friend who said that this was an opportunity for me to find out what a healthy life was for me. She said that maybe your body is trying to help you to find that life.
I think she is right. I have lived most of my life doing the things I think I should be doing. Working too much, socialising too much, drinking too much… being all things to all people. I used to compare myself endlessly to friends who had so much energy and beat myself up that I didn’t have that energy. I’d chuck down another cup of coffee, drink more wine and force myself to get with the programme.
But I don’t want to do that anymore. I can’t.
I have realised that I am someone who needs a lot of rest. I am also someone who shouldn’t drink alcohol and needs to eat a really clean simple diet. I am someone who needs peace and routine and very small amounts of socialising.
I need a much gentler life than the one I’ve been leading.
I guess this is why mum said I’d suit being a nun.
Earlier this summer I said to a neighbour, ‘For the first time I really want to be well.’ He said: ‘Didn’t you want to be well before?’ And I realised that I hadn’t. I’d wanted to be able function, to do all the things I thought I should do, to work, to succeed, to be there for the people I thought I should be there for - but I never really wanted to feel well just for me.
Now I do. I want to feel well. I want to find out what kind of life makes me feel well. And I want to live that life, no matter how far it might diverge from the things I think I’m meant to be doing.
I want to eat homemade soups and be well enough to go on Autumn walks - which I was able to do yesterday. I went out for an evening trot after work and felt pure joy seeing the shiny golden leaves glimmering on ground, under a street light. This is life, I thought. I like it when I have those thoughts. It’s a sign that I’m coming back to life.
We live in a world that gives us so many bullshit messages about what life is meant to be, what we’re supposed to be doing, how we’re supposed to look… and it’s taking us away from what’s real and what we know deep down to be right.
I imagine each of us knows deep down what we need to be well, if we spend time thinking about it. But sometimes we don’t want to think about it because to live a healthy life might mean making changes. It might mean leaving behind people pleasing and addictions, jobs and whole ways of being. It might mean have to sit still long enough to face ourselves and the things that made us jump into the unhealthy behaviours in the first place.
I can see that the last few months - and years, really - have forced me to make changes. It hasn’t been fun, but I’m grateful.
xx
What I’m reading
I’ve read two Caroline Myss books about illness: Why People Don’t Heal and How They Can and The Creation of Health. Caroline is a medical intuitive which means that she can read people’s energy and say what it is that is causing the issue. Sounds incredible - in the true sense of the world - but she’s worked with traditionally trained doctors who say she is accurate. She believes that a large amount of illness has emotional or stress based causes. I know that for some people this seems like victim blaming but to me it rings true and I’ve found it helpful to think about the patterns in my life that contribute to me getting ill so often. She also explains that the world today (even when she was writing in the 80s) is deeply unhealthy - our environment, our politics, our systems and this affects us more than we think. Again, that rings true to me.
What I’m watching
The Good Wife - again! Alicia is my comfort blanket. When I’m ill I don’t have good concentration so I love a long, glossy, US box set - ideally something I’ve watched before so that it can be on in the background without me having to think too much.
Also Industry -OH MY GOD, it’s so so so so so so good. Young hot things working in the City in London, making money, losing money, taking Coke in loos, shagging each other and being brilliant and awful. The characters are so good and the overarching points about what makes the world go around gives it a lot more weight than just shagging and coke. Really one of the best things on telly.
What I’m buying
Vitamins. Dear God. So many vitamins. Also vegetables. I am now well enough to walk to The Big Tesco’s and realise that I have been fleeced on my street for years. If I go into my local Spar to get some milk, I come out having spent twenty quid on I don’t know what. The Big Tesco on the other hand… I bought every kind of vegetable, lots of fish, lots of berries and got change for fifty. A healthy life means doing A Big Shop at The Big Tesco.
I’m trying to follow an anti-inflammatory diet - which is basically a lot of vegetables and protein, cutting out sugar, caffeine and booze. All my major food groups gone!! No more pastries and chocolate and coffee and wine. I’m only a couple of weeks in but so far so good. Apparently people with long covid have high inflammation (inflammation is connected to lots of conditions) so I think this way of eating will help.
What I’m trying
Yoga Nidra. As well as inflammation, people with long covid also tend to have an out of whack nervous system. Yoga Nidra is mean to be very good at calming this down - or regulating it, as I think the term is. It’s the kind of yoga I like - the one where you lie in bed and don’t move. It’s like a meditation really and it’s very very calming and restful. I’ve also been doing Joe Dispenza’s meditation You Are the Placebo. It’s a weird meditation but someone I respect recommended it so I’m sticking with it.
Ok, that’s it for now.
Love and thank you to all of you for reading. I’m sorry the service has been so patchy but it’s for all the reasons I’ve explained above. Thank you also to everyone who has been generous enough to pay to subscribe. I appreciate it more than you might imagine. I hope that as I keep getting better the writing will start coming back.
Love
Mx
Hi Marianne, I can totally relate to all of this, in fact our stories are extremely similar! I feel like you've explained so well what it's like to suffer with such extreme fatigue and other long covid symptoms.. although I never got 'covid mouth' though luckily.. sounds delightful! 😬😆 I hope you don't mind me sharing this with my family and friends, as it it goes a really long way to clarifying what it's been like for me for the past (nearly) FIVE years! I'm so pleased to hear that you are starting to get to a place where you can see a healthy future 👍 Just remember to go gently and don't set yourself back again by over doing it 🧡 I'm such a sucker for this.. I never learn! 🙄
Thank you so much for sharing. The message is so equally valid for those that haven’t got a chronic illnesses signposting a disregulated nervous system. It’s such a helpful and simple reminder of the joy of a simple life, true to our values. I’ve found this an incredibly helpful read today (and everyday!). Thank you so much x