60 Comments
Aug 21Liked by Amber Horrox

As I approach year ten. This 👇🏼 Thank you.

“Grief for the loss of the before times. Grief for the loss of my career. Grief for the loss of salaried income and benefits and knowing that my mortgage could be paid. Grief for the disconnect of what was known (irrespective of whether it was serving me or not). Grief for the loss of a prior relationship. Grief for the loss of support I once had in my life that I couldn’t fully lean in to and now here I was, left with not nearly enough to enable me to function sustainably, never mind move forward.

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It’s a lot isn’t it. As triggering as this piece was to write, it’s helped me process the enormity of it immensely 🙏

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Aug 21Liked by Amber Horrox

And your writing helped me to reassess and respond differently. Admitting to my grief and changing identity has been hard, as I was trained professionally to put a positive spin on difficulty. As a life long creative collaborator used to the grind, the isolation and lonely work of surviving a life changing illness is and was daunting.

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Thank you for sharing that insight. I too, have struggled with always appearing ‘positive’. To the extent that it was a number one compliment I would receive from others. Part of me would be screaming inside “I don’t always feel positive” but was unable to express or articulate (or even connect with) how I really felt. A book “freedom from the known” has helped me in some part decondition from the positive/negative, good/bad, right/wrong way of seeing things. A big help to my healing but you’ll still catch me using those words occasionally - the conditioning runs deep.

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Oh, this is really familiar. Six or seven years ago I realised how much harm I was doing to myself (and others, honestly) with my relentless positivity. Since then I’ve been trying to have a more nuanced approach to life. But to the outside world I suspect it looks like I’ve become a lot more miserable! And people don’t always like it when the cheerful, positive people stop performing that for them…

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So much truth in this! When people ask me how I am now. They get a true response whether they like it or not😂 in creating space for myself, connecting to every and allowing myself to feel my feelings, I’ve come to realise that how I’m feeling (especially in autumn/winter week of my menstrual cycle) is how I’m meant to be feeling. I’m not meant to be parading around like a lot up Christmas tree. Something I have only truly learnt this year.

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*energy not every

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I really hope that, as painful as it has been, that, eventually, writing this down heals some of the grief for you…

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It’s been very healing. To be able to process it, feel it, identify it in the way I have has been incredible. It’s taken me years to be able to do that. It feels good to transmute it in a way that others can read, connect with and learn from it themselves. Purposeful.

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I'm so glad. Writing is so powerful, isn't it? I agree that there is something extra purposeful and healing from writing that transmutes your thoughts and feelings into something for others to read. I've been journaling for myself forever (it feels like), but writing for others is doing something new for me.

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I was journaling a few years before writing to share with a community. It’s something I describe as a massive evolution of my human experience. To go on to do that.

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60 years of journals in a trunk in the basement. A bin upstairs. A hardcover habit that flew alongside my deep stationary fetish resulting in notebooks and daily pages galore.

Fuel for a good bonfire some day. 🔥

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Thank you for sharing your story as it unfolds, Amber. For me, grief is an ever-precent part of illness that doesn't get talked about enough, and I resonate with your sense of being punched by it. If only the language of illness included more ways to talk about this loss. Perhaps we'd find it easier to process.

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It was bizarre for me to discover what it was, long after I was impacted the most by it (my dad had recently died during all this so there was that kind of loss too - I was dressing up in his clothes for a long time and I did not know this was grief manifesting). There are some brilliant posts on here written about grief - it’s only in reading the stories of others that I’ve come to realise why I was struggling so much during this time. I have no doubt it would be easier to process if we knew what it was and were able to talk about it.

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I came to read this piece after you talked about it on Suzy’s Heartleap writing hour. It so resonated with me. As well as bits that other people mentioned, the big one for me was the realisation a couple of months ago that the NHS (or more specifically western medicine/surgery) cannot help me. The realisation has been so freeing. I no longer look in that direction. I can try so many other approaches. I am trying them. Some are working. Some don’t seem to be. But none elicit the feeling of failure that I had when the NHS offerings dismissed and belittled me. It’s my health, my well-being. I can choose what I do about it. And going to the GP, waiting for a referral isn’t it. I don’t think they’ve missed me.

I’m really looking forward to Part II. Thank you.

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This is one of the greatest realisations to have on the journey. Like you say, it can be so freeing. In ways I don’t think many of us are aware of or could imagine.

Empowering ourselves with the realisation that we have other options, that there are other avenues would also free up space for the nhs to better support those lives they are able to save and make a difference to.

It would be win win all round, but I wonder how long it will take for us to wake up this on a greater scale?

I’d love to know what you’re trying, either that’s working or isn’t quite working yet? And thanks for looking me up. It took me a lot of courage to speak up in this mornings session, but I had this feeling that someone would be listening.

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Thank you for your bravery :)

And thank you for filling in the other part - that there are many people who want and need the services that are available.

I’m taking ashwagandha - recommended by a friend for menopause. And I self referred to an exercise/movement programme at the local gym. I think the main change has just been the decision to stop expecting any kind of positive help from medical/surgical doctors.

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Aug 22Liked by Amber Horrox

I really felt this. Especially the part about grief. I've been working with a therapist to work through this. I knew I had grief in my life, but I just saw grief as losing a loved one (i.e. my mum), but my therapist pointed out that grief is not only a death, it's a loss of any kind. So when you said grief of a past life, of relationships, of a career, I can totally understand this feeling. It's taking me some time to come to terms with it in relation to my chronic illness, I guess we have to go through all the stages of grief first? And from experiencing the grief losing my mum, I know that the feelings never truly go, they come in waves which lessen over time, but they will always be there in the background. It's hard to accept that grief will just have to be this annoying companion in my life. Maybe I should give it a name to make it seem less scary...

Thanks for sharing this with us, as it's such a hard topic to write about. I look forward to part 2 x

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Like I’ve had to learn to do with pain (out of sheer desperation more than anything), I’m

Wondering if we can learn to befriend grief?

Not an insight I would’ve come to, had you not have shared what you have here. It’s giving me something to think about now I’m any case☺️ part 2 is now scheduled for next Wednesday. It’s a biggy and seeing how this one’s lands, I can’t wait to see what conversations the next one unearths 😲

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Through IFS therapy I’ve learned to listen to ‘parts’ of myself that maybe I have wanted to reject, like grief, shame, even pain. Grief is an important emotion and it is trying to tell us something. It is worth listening to those parts of ourselves with compassion, even if they only know a small part of our lives and not the whole story…

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Such life changing work. It’s one hell of a path to be on.glad you are on it with me☺️

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Thank you for being honest and vulnerable in sharing your grief so that we may learn from your experiences. We all need to know we aren’t alone in mourning the parts of our lives lost to chronic illness.

Also - adorable turtle!

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Admittedly, I’ve seen some brilliant blogs written by others on grief and I know a few books are either out in the world on the topic or are about to make their way out. If it weren’t for others writing about it before me, I wouldn’t have realised grief was what it was. Nor that when I felt sick sharing my struggle the other year that this was a challenge so many of us faced until I witnessed other conversations about it - all helping me feel less alone and more normal.

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I’m so thankful for you and so many others having the courage to tell your stories. The grief and shame that come from chronic illness is almost (for me) worse than the pain and ill health…

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I think it’s such a common thread for many of us - that we have grief and shame and may even be hiding our chronic illnesses from others. I’ve been trying to work on a post about why it took me so long to admit I was disabled - and there’s SO many emotions that come along with that.

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Look forward to reading your insights on here. An open topic with so much to debate I’m sure.

A subject I want to write abut myself (though I have to wait until flow is there and I can articulate what it is I want to say).

For me, it was an easy “that’s exactly how I feel” when the neurologist I had waited 20 years to see told me that migraine disease was the world’s 2nd most disabling disease and there I was, after all that time of telling them migraine was what it was, disabled.

But when a friend asked me the other month “how long were you disabled for?” I immediately replied “oh not long”. Only to go away and think about it wondering what does disabled really mean? I was disabled by 2 attacks a month for 2.5 weeks a month for years. I was living with chronic fatigue outside those attacks for another few years. I had more than 2 attacks a month for years. Where does it begin and where does it end?

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Where does it begin and where does it end is SUCH an important but difficult question. One that’s probably different for every single one of us. One of my conditions is genetic so was I disabled from birth? I don’t know… my function was always impaired but not to a serious level until much later in life.

So much to sit and process isn’t it?

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Yes. I hide mine mostly, even from other people with health issues. The fear of my struggles not being believed is also a big part of this for me…

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I hid mine for 20 years. Until it became impossible to hide and then i had no choice in admitting it to myself. Arguably the greatest challenge of all?

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I think so. I suspect I'm not fully there...

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Thank you for this post. Your words about grief are moving and cut straight to the point. I also love your emphasis on ‘perfectly imperfect healing’. Looking forward to part 2 xx

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Thank you, that’s good to hear. I only ever write in flow (not push or force), so it can take a while to come out but when it does, it’s straight from source. It’s helpful to know how it lands with people.

I’ve been thinking recently, more needs to be made of the focus on perfectly imperfect healing. None of my changes have been perfect - especially dietary for example. I don’t eat 30 different types of veg a week for example, I was still uneducated about some of the things I’ve learnt about along the way in the last few years. I didn’t eat all organic or get it all right. Far from. And I believe it’s this that needs to be celebrated, to be recognised.

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It’s amazing how we only learn to slow down when our body finally says no, and we become ill. Until this happened to me three years ago, I just pushed through the discomfort because I had to, and I took it for granted that I could.

It’s so hard to take the pressure off, to unlearn habits and to slow down. I can only imagine how raw it must feel going back over your experience. Thank you for sharing this.

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Thank you Jenny 🙏☺️ it’s a lot to unlearn and all the stories that go with it - and then to relearn. It’s only now I can appreciate why so many of us don’t. The road to recovery is not exactly the easier path.

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You’re welcome. ☺️ It really isn’t. It’s such a personal experience (in many ways). I like your approach, and am pleased to have found your newsletter.

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Thank you. I’m in the process of having books published. It’s been a long time writing with this as an aim and not over spending my energy building an audience so it’s great to finally arrive somewhere close and know that my work is starting to resonate with others so deeply, and, of course, makes sense😆

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That’s great. Good luck with publishing your books. I’d be interested to read them. ☺️ Building an audience here is hard. It’s such a juggling act. I am lucky to have met some wonderful people on Substack.

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Aug 21Liked by Amber Horrox

My body finally said no too, and then Gabor Mate wrote that wonderful book. A revelation regarding the social causes contributing to my disease. MS

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I haven’t yet read that one but it’s on my list!

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I loved that book and ‘The Myth of Normal’! I have also read ‘The Body Keeps the Score’ by Dr Bessel van der Kolk. Have you read either of these?

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I haven’t read the myth of normal yet nor completed the body keeps the score. I’ve read hundreds of books and these are still on my reading list😆

Here’s a selection I shared the other month that I feel helped shape my recovery - feel free to share or comment on any you’ve read or would like to read:

https://warriorwithin.substack.com/p/resources-that-shaped-my-recovery

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Aug 21Liked by Amber Horrox

Yes. Both.

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Both of these have been really helpful to me. I started IFS therapy (and found it amazing) after reading about it in The Body Keeps the Score. One things I haven’t yet done, and want to, is answer the six questions that Gabor Maté recommends we ask ourselves…

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IFS therapy sounds really interesting. I hope it goes well for you. I need to re-read van der Kolk’s book. It was my favourite out of the three.

That said Maté’s work has opened my eyes to how women’s health is impacted by the social and political environment. I found it really enlightening.

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Yes, I agree with you that Maté's work has made me realise how much sociopolitical aspects are affecting people's health. I wish this was being talked about more widely.

And thank you. I've been doing IFS therapy for a few years now, and it has been incredibly helpful.

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I went to visit Newstead abbey the other day. A famous poet lord byron lived there in the 1800’s.

It talked of his struggles with mental health and the societal expectations at the time being in conflict with his needs.

I was shocked (but also not surprised) to find that this is nothing new. It has been known about for quite literally centuries.

I can only see that it is down to those of us who are suffering the most that will unearth this and bring about great change from sharing our stories. It will also take a uniting and a standing together and this is something I hope to be a part of bringing about.

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This is a cracking piece. We’ve spoken for hours about this and yet seeing it in black and white on a page it hits differently.

You have been integral in my giving space to grieve my infertility and it’s opened up space for emotional health. I can see everywhere how emotional health is so instrinsically linked to physical health, once you see it, you can’t unsee it!

Perfectionism, the lack of, is so critical as we make these changes.

Great piece friend and I look forward to part 2! 💚

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🙏🥰 I’m so glad this one is landing in the way it is. I didn’t see that coming. Yet it’s so interesting about how this piece and baring all about the breakdown have been my highest read posts to date.

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Resonating a lot with this (and have some posts in draft on similar themes). What I love about your account is the sense of turning within for the answers and some deep inner listening. I think this is what our bodies are calling for more than anything perhaps?

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💯 - it’s very much my message to others. It’s definitely not a case of I’ve done it this way now this is how you do it. It’s your body knows the way and when I get my hands on clients during bodywork this is what I’m always sensing from their body. It has a lot to say, a lot to communicate, a heck of a lot of wisdom it wants to share. I have a series of circles I’m about ready to launch for next month and the first one is teaching others to let their body lead. It’s extremely powerful.

Feel free to tag me in when you share those drafts! I’m really struggling with slowing down atm and it’s making me ill.

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Love that message about letting your body lead. Sounds like great work you're offering Amber ❤️

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Sep 3Liked by Amber Horrox

Amber! I am so pleased to see you share your story here so publicly!! I know that might be a weird thing to state but I know that this has been a burning desire for you for a looooong time and to share so vulnerably is just a huge step for you and I cannot be more ecstatic to see this 🥰🥰🥰🥰💖💖💖💖💖🥳🥳🥳 you are such an inspiration and the wisdom you hold from your experiences are pure gold 💫💖🙏🏼

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It took me 3 years to write this one. And I came to realise that through writing it the reason was because of all this grief! A lot to process and a lot of healing for me to get this far to process. I’ve known for 3 years that this insight, this message is for my readers to benefit from but I’ve had the learn the hardest way so it’s been super painful for me. It means a big shift for me now that I’ve been able to get it all out.

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Aug 31Liked by Amber Horrox

A brave and beautiful piece Amber. I'm so glad you have come to write this. 'I matter'. YES!!! And oh, the realisation that no-one is coming to rescue you, the notion of 'perfectly imperfect' healing - this is all so real and true. I think a lot about grief, and traditional notions of grief vs other areas where we experience it, but often don't feel we can express it. I have grieved all those things you mention, and still do, although it does fade. Thank you for writing this, for helping us to know we are not alone x

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Thank you☺️🙏

Yak, that realisation no one is coming! After all the conditioning 😆

I realised after this, that I hadn’t shared the traditional notion of grief in here. My dad had recently died. So I and amongst all this, I was dressing up in his clothes!!! Not understanding this too, was grief.

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Aug 31Liked by Amber Horrox

Oh goodness yes - interspersing it all with grief through bereavement 💔💔. It’s sometimes just too much for the brain to manage 🫶

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Thank you for sharing your story, Amber.

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Thank you for witnessing it 🙏🩵🔹

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