27 Comments

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.

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Thanks, Morgana. I just listened to an interview with Rebecca Tolin last night. I liked her. Would love to hear more about what it is in her approach that's helped you. Mx

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Oh cool! What's helped me, in a nutshell, has been with her approach is the idea of not being scared of our symptoms and not feeling we are broken or damaged and need fixing, finding joy in the moment / day yet being real with our feelings, listening to the messages in our symptoms and most of all, having huge compassion for ourselves. I've found her course a great container over the past few months and while I'm not at the level of being able to work a 'job' again (and may never be), I am functioning a lot better in the gentle, slow low demand life I've created for myself - no longer needing to go back to bed repeatedly through the day and feeling a lot more enjoyment. My fatigue is tied up with neurodivergent burnout too so there are other things to unpick beyond the scope of her course but I found it great as a companion framework.

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This is really helpful, Morgana. Thank you. So glad you can get through the day without repeated time in bed, such a win. Are you always clear in what the messages are in your symptoms? Sometimes I can connect emotions to symptoms and sometimes I can't. And yes I am really thinking about the whole being scared part of this condition and how it doesn't help. Yesterday I went for a walk because I felt well enough to but then I was scared I would 'break' myself and wake up today feeling awful and then blame myself. But if I keep not doing things, even on good days, what kind of life is it?.. so I'm stretching a bit and I woke up this morning feeling good!

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I can so relate to that stuff about the walk... the course addresses this kind of thing a lot! There's a practice called graded exposure to help, and also just a lot of theory to help you reorient your thinking. Lots of somatic practices, but all presented in what I found a super gentle, non overwhelming way. The somatic work has been so helpful in that. Good to hear you are stretching and felt good this morning - so much runs on how we feel when we wake up, right? As for being clear about the messages in my symptoms, nope, definitely not clear all the time! As being autistic and having C-PTSD I live most of my life in my head, this is a slow process for me, but I have started noticing amazing things like some days I'd get crippling back pain on a walk and another day, none at all. Same walk, same route, same amount of sitting in the rest of the day. Difference being stress levels. So it is quite illuminating!

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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

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Ah, Una. Thanks! xx

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Thank you for describing exactly that ‘looking for reasons why’ rumination process. I’ve spent a lot of time doing exactly this and realised it doesn’t help much. It’s reassuring to hear I’m not alone in doing it though. Keep marking off those good days.

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Yeah, I don't know that I am able to see any patterns in what causes the crashes and then I drive myself mad trying to figure it out. Was it the pastry I ate? Was it going outside without a hat? Was it working? Was it not working? It makes everything in life a potential danger, which I don't think is healthy. I'm realising that now, how scared I am of doing things in case it makes things worse - but that's no way to live. Today I feel really good and would like to enjoy it instead of keeping myself in the flat in case anything I do sets me back. Mx

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I’m glad you spoke to your mum and you’re writing here. When you know you’re keeping your thoughts and feelings to yourself that’s when you also know you need to let them out, with whomever and in whatever way feels safe for you. Bottling it up works for a while but it’s not sustainable x

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Thanks, Gabrielle. I'm realising that letting it all out is very important. Suppression ain't healthy! xx

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Excellent kidney/penis Chinese medicine story. True gold. Hope the good days are plentiful!!!

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Thanks - I loved that moment!!!

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My pre-order of Love Me arrived last week. I savour a chapter every morning with a cuppa. I like taking the time to think and how it relates to my life. I am so grateful for this honest book. Cheers from Canada.💛

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Ah Tara, thank you! I hope I didn't put you off your cornflakes with some of the more out there chapters xx

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I live in Canada, and I’m reading this just a couple of hours after I bought a copy of Love Me from Indigo. Been waiting for months! Needless to say I’m very excited to read it. Sending love <3

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Roman, thank you for reading! I hope you like it. Mx

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Appreciating your raw honesty Marianne. As a fellow chronic illness sufferer, these voices and stories are so important. And yay for good days ❤ (Also wish I'd known about that sauna when I lived in Hackney and worked for the NHS, but perhaps it's a more recent addition).

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Thanks Vicki, I would rather not be writing about this... I realise I have so much shame around being someone who gets ill, I guess the product of a world that tells us all that a 'good' life is one that's up and out and doing things... but that's why it's important that we write about illness. In sickness and health. It's all part of life. Thanks so much for your writing too.

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Wishing you well Marianne, please keep writing. You have achieved so much. All over the world! Take care, Alison

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Thanks, Ali. xxxxxx

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I FEEL your pain. I’ve gone through a similar year of health uncertainty that’s lead to financial stress. It’s a vicious cycle. Keep writing! We need vulnerability and reality in the world today. Hugs from Australia!

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Yeah, the financial stress that goes with ill health only fuels the ill health and around and around it goes!!!

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Sending so much love your way Marianne. A good cry and an Irish mother, loved that! 💖

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It's good medicine, Carmen!! I'm lucky to have it. xx

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Sending compassion and empathy. I hugely enjoyed both your books, and I really love this newsletter too. You have such an accessible, real, warm way of communicating and we feel *right there* alongside you. And a good cry is always worth having, that's why it's called 'good', right? 😉

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Thank you so much. xxx

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