I started writing a newsletter on Tuesday morning about the joy of waking up feeling well after a couple of weeks of not feeling so good. The simple joy of opening the curtains and wanting to get up. Woohooo. I wanted to celebrate. To mark the moment with a positive post after a few heavy going ones.
I had work to do so I didn’t finish that post. By Wednesday morning things were different. The pain in my neck, head and shoulders was back. I was able to do work in the morning but by mid afternoon I was back in bed, sleeping on and off for fifteen hours.
This morning I woke up teary with the frustration of it all. The good days and bad, the lack of predictability, the total confusion about what the hell is going on.
I try to be zen and accepting of it all. To tell myself that there is rich learning in all this, even if I don’t understand what I am meant to be learning anymore. I try to remind myself that even on my most difficult days I am blessed and loved and have it so easy compared to half the world.
But then on days like today I am just so fed up of it all, I want to cry and throw all my toys out of the pram. I don’t know how much more I can take.
It’s been at least two years of my world getting smaller and smaller and smaller. I don’t make plans anymore and if I do I often have to cancel. It feels like a big deal to venture further than my street. I am so grateful that I love my street and the people on it but I would like to leave it occasionally.
I found out recently that the chip shop across the road is changing hands and the Tasty Fish sign (made semi famous in lockdown when I kept posting pictures of it on Instagram) was about to go. I started crying. ‘We need to get you better,’ said my neighbour Gary. ‘Seriously. This is unhinged.’
Every time I go downhill, I keep trying to figure out what I’ve done ‘wrong’. Was it because I went for a walk? Was it because I didn’t go for a walk? Was it because I slept too much or was it because I slept too little? Was it because I thought negatively and ruminated? Was it because I saw a friend or was it because I didn’t?
I am like a detective trying to figure it out. Is this emotional? Is it physical? Is it inflammation? Diet? Stress? Menopause? Is it lack of vitamin x, y, z? Is this all in my head? Am I choosing this in some way? Am I somehow opting out of life and making this happen? Is this a breakdown?
Or is it just Long Covid?
End of.
I really believe the Gabor Mate stuff about stress showing up in the body and when your mouth can’t say no your body does. But I feel like all I do is say no these days.
I am open to possible emotional causes but too often it sends me down a road of blaming myself for being like this. It’s something I’ve done wrong. Some character flaw.
I hunt for childhood traumas that aren’t there: was it that day I peed my pants when I was four that led to internalised shame that is now showing up in my body? Is it low self-esteem that makes me drive myself into the ground with work? Can I blame my mother for this? My father? Both?
But then my aunty tells me that Oregano oil will help - so I buy that. Another person tells me about red light therapy - I google that. A video says it’s my lymphatic system that’s causing the fatigue - I google lymphatic drainage… and see that like everything else it’s expensive but then find another video telling me I can do it myself. I now start each day scrubbing my armpits with a dry brush to get the lymphatic system going. That video also told me I needed to ditch my Mitchum max strength deodorant so I’ve done that too. I now smell.
Then I wonder if I should try fasting? Or if, actually I need to eat much more than I am?
It’s a head wreck.
I think of a gorgeous human I met at a F*ck It retreat years ago. She was in recovery from addiction and throwing everything at it. ‘I’m stressed out from all the relaxing!’ she said. Me too!
And so today I admitted defeat and brought out the big guns. Or rather gun.
I went to mum’s and had a good cry over a cup of tea and left over Christmas cake.
I try to keep my misery to myself because I don’t want to cause her worry but sometimes a middle-aged woman needs the comfort of her mother.
She reminded me that actually I am having more good days than I used to.
‘Get a calendar, Marianne. And mark on all the good days - you’ll see. You are getting better.’
‘Do you think so?’
‘Yes.’
‘Sometimes I think that this is how I’m going to be forever,’ I say.
‘Don’t be silly,’ she said.
‘Some people have chronic fatigue for their whole lives’ I said.
‘You won’t,’ she said as if that was that, she had decided and as an Irish mother she can shape reality to her will. Maybe she can. It was a relief to hear her say it.
She then reminded me of all the people who have it much worse - which is both annoying and also helpful. It brought me back to how every meal with my grandmother started with a reminder of all the starving children in Ethiopia. And mum’s reaction to dad’s death: ‘At least it wasn’t a child!’
There is always someone worse off.
I’m well aware that as I have this moan, typing from my warm, safe flat, LA is on fire, yet more people killed in Gaza, God knows what in Ukraine.
I am so blessed.
And I am also, today, feeling sorry for myself.
xx
OK A FEW FUNNY THINGS TO CHEER MYSELF UP AND TO STOP ME FROM BEING A WRITER OF ONLY MISERY AND ILLNESS.
On good days I go to the gorgeous Hackney sauna near me, which is really helpful for pain. It’s community run and not for profit and the ethos gives the place a lovely atmosphere. NHS staff go for free and it’s a glorious combination of tattooed man buns who love ice baths and older women who need help getting into the sauna with their crutches.
I love listening to people’s conversations and yesterday I overheard the latest trend: ‘gnoming.’ Have you hear of it? Apparently it’s a thing on the dark web - you can put on a message and an address that you want targeted and people will go there and fill the garden with gnomes. And if the person has really pissed you off, ‘you can ask for evil gnomes.’ Who knew?
Also I am now a Chinese Medicine doctor practicing in sexual dysfunction.
I went for acupuncture last week and was waiting in the reception area, while a man was trying to buy herbs from the Chinese doctor behind the counter. The man was visiting from Africa and had a thick accent. The doctor doesn’t speak great English. They weren’t getting very far. The African guy turned to me and asked if I could help. I asked him what he needed. ‘I need help with my erections!’ he said. ‘I have a weak erection!’
I looked at the doctor and said ‘He needs help with his erections,’ in my best private convent school accent.
The doctor still didn’t understand. The man started doing gestures with his hand at his crotch. The doctor started laughing. ‘Oh!! Yes, Yes!’ The doctor got him some herbs.
‘Is there anything else I can try?’ the man asked. Again the doctor didn’t understand.
‘He is asking if there is anything else that he could try, anything more than those herbs,’ I said.
The doctor explained that he could try a remedy for his kidney because in Chinese medicine the kidney is connected to erections. Both men looked at me. ‘In Chinese medicine the kidney is why you have weak erections.’ I said.
The guy got the kidney herbs too. He said that his wife was not with him on this trip but he would try them when he got back home. We wished him luck.
I live for these kinds of moments.
What else?
Oh yes!
Love Me! comes out in Canada this week and has been picked by Indigo, which is Canada’s biggest book chain, as one of their non-fiction picks, alongside a book by… the Pope! Yup, the Pope has written a book about Hope and this Catholic schoolgirl has written a book about sex and Indigo thinks they are both great.
Thank you Norah Allison for listening to it on the day it was released and sharing about it to her gazillion social media followers.
And thank you everyone who has written to me about Love Me!
Last week I admitted something terrible to my neighbour: I regretted writing Love Me! It had cost me too much physically, emotionally, financially. I felt so guilty saying it, like I was saying I regretted having my child or getting a puppy - both of which I imagine I would regret.
But then as soon as I said it I had a week of messages telling me the impact it’s had. One man told me he cried at the end and that it made him feel alright for wanting what he wants. Two mothers told me it had made them think about how the talk to their kids about sex. A woman told me that I had completely changed her idea of what being single meant. Another friend told me she overheard someone she didn’t know talking about it in a coffee shop. AND finally the first person got in touch to say she had gone to a Jan Day retreat since reading the book and that it was life-changing.
Maybe this is the book equivalent of feeling deranged after months of no sleep but then your baby smiles and nothing else matters. Although I feel over dramatic equating a book with a baby. I do not have to keep this book alive. Nor take it to school. Or get it through its teenage years. Although there were times when it felt like four year labour with forceps.
But still, thank you very very much to everyone who has taken the time to get in touch. It means the world.
OK, and TV recommendations:
Anyone watching the Billy Bob Thornton show about Texas oil? It’s called Landman and is a mix of men being men in cowboy boots, making hard deals in between whiskey, cigarettes and heart attacks… and then his blonde bombshell wife and daughter who are sexually-emancipated comedy geniuses.
I also watched the movie A Real Pain which I adored. Two cousins travel from New York to Poland to visit the home of ancestors. Bitter sweet, gorgeous, sad, funny.
Oh and that movie about the Pope - Conclave - was excellent. A twist I did not see coming. Tense and gripping and also super beautiful.
I watched a weird gross but also kind of brilliant movie about a drunk doctor who kills a man in surgery and then the man’s son comes looking for revenge. Super weird and horrible and maybe don’t watch it but also maybe do if this is your kind of thing. I can't remember the name, let me google… The Killing of Sacred Deer.
Ok that’s it for now. Thank you for reading.
I feel better for writing. I think I need to write more though this crappy thing instead of keeping it all to myself.
Love
xx
PS When I’m better I will start a Tasty Fish grief support group for those of you impacted by this sudden loss. Sorry to throw that news in with no warning.
I love your writing and how it feels just like I'm having a cup of tea with a friend. The desperately trying to work out what's caused a setback .. so achingly familiar. I can't remember if I've already gone on about this in yout comments or perhaps you've read about it in my articles, but lots of people have apparently recovered from long covid with the mind-body syndrome approach and my chronic fatigue has been improving since doing Rebecca Tolin's course in it. I'm glad your Irish mom was reassuring. Sometimes we just need that hope! More good days than bad sounds very promising.
Marianne, just to say, your writing gives me so much comfort, even though I know you are going through so much. I love your absolute honesty and no fluff approach to writing about real life. Keep doing what you’re doing, health permitting, and go easy on yourself always