Thanks Amber, you are so right about blame being culturally ingrained, I'm on such a journey learning to let go of that! It's just finding a balance isn't it with positivity and realistic hope, I certainly don't want to sound pessimistic because I'm actually not. I absolutely don't think you're not sensitive to it all, I just wanted to bring in the long term chronic illness perspective and how that can be different xx Hope that makes some sort of sense!
I can see this “She reminds me that when I first came to see her I was deep, deep in despair and hopelessness and I have come a long way even if it doesn’t feel like it, even if I can’t see it.”it’s a very long way that you have come. I see this often in people I work with, first before they. It doesn’t often take that much longer for the person to then be able to see it. Change is happening. Transformation awaits.
Also, chronic illness is “3 months or more”. I’ve no idea where “life sentance” comes from but I appreciate it is embodied by the many and the message many of us receives. But the true definition is “3 months or more”. Meaning the possibility for a chronic period to end is not only real, it’s a cycle I’ve broken many times - whether chronic pain, fatigue, depression, anxiety, binging. Etc etc etc. it’s very possible. It’s just for some reason we’ve been sold the opposite of it’s truth xxx
Thank you Amber for the words of encouragement. I am deeply encouraged that you see it too. What I recognise now is my need for pacing, supporting myself in not returning to push, push, push. I am embracing a slow transformation! Accepting everything won't manifest in an instant.
Also thank you for this defining of the term 'chronic illness'. I did not know about the 3 month thing and my window of hope opens a little wider. It is fascinating the things we are led to believe that are not true xx
Glad you are so encouraged by it 🙏😍 great lesson to learn (pacing and letting go of the push/force energy). The language we use is so important - I’ve recently realised that I did not follow the control, manage, fix, cure philosophy. This really stood me apart on my healing journey because recognising that it wasn’t going to be instant helped me stay true to me, my newfound beliefs (I matter, my health matters) and weather the relentless storms, it being a non-linear journey and so much of the unknown.
I desperately want to write a post called the incurable cure around all this but the words just are not there for me to fully express and articulate what it is I want to say. But the chronic thing I understood immediately (because I had to google it so I could be sure that all the repeating I had to do to my neurologist was accurate). It’s only in the last year I’ve realised people in the chronic illness community refer to it as a life sentence and often affirm “I am ill for life. I will never get better”. Its the words, thoughts, feelings and beliefs that have the most power over our reality, not the other way around x
I think it is also important to hold space for those of us who have been ill for a very long time. I have only recently labelled myself as chronically ill, I definitely have phases of being better than I am at the moment but I have not been well for decades and I have very much rested, meditated, changed diet, reduced stress etc etc etc If I say it is a life sentence (not that I tend to) then it wouldn't mean I don't have hope of improvement because I do. But after 30 years of this I am not going to climb mountains or run marathons and that is not a failing on my part it is the reality of these illnesses. I love your hope and positivity Amber and it is definitely a good thing and it spurs me on to keep aiming for improvement but I also don't want to beat myself up and feel like a failure when it doesn't happen. This year has been hard.
Thank you so much for your honesty and enquiry here. It helps me to hear your words and thoughts. I am very much between the belief of it will get better, I can turn this all around and also the belief thought that maybe it won't ever get fully better, maybe this is my life from now on and somehow I need to learn to be okay with it and accept it. It feels like a very fine balance, a curtain continually shifting in the breeze. I wish I gave myself more time to sit with my beliefs, hopes and fears but also recognise how I run from doing just this because I am deeply afraid.
Yes it is definitely a fine balance (a curtain continually shifting in the breeze is a great line) I think an element of acceptance of where we are at the moment and a hopeful positivity for improvement is helpful, how far the improvement goes is the unknown scary bit. I am aiming for getting back to a more liveable level than I'm at, where I can see friends, go for walks and go out sometimes and be able to pace my energy successfully rather than be on this rollercoaster of unpredictable pain and exhaustion! I've been ill for 30 years but this year is much worse than I've had for 25 years, getting back to where I was would be good. I hope you see improvement soon xx
Absolutely. You make many valid points - I love that you say “it is not a failing on my part” and the awareness you have of not wanting to feel like a failure. Tied in with acknowledgement of how hard this year has been. Carrying blame feels culturally ingrained in us and is a massive part of healing in and of itself.
Thank you for the nudge in highlighting the need to hold space for those who have been chronically ill for a very long time. I apologise if I didn’t/don’t come across as sensitive to that.
A fantastic piece of writing and although I don’t have anyone dependent on me I heavily relate with the rest of what you said.
I also was going to say what Amber said about the chronic word, incurable and life long are often words we hear with endo. But I like the idea of putting ‘At the moment’ At the end of that as there’s so much we don’t know yet and so many years ahead of us.
Once we pass that threshold of menopause, many or even most women with endo experience less symptoms. Here’s to hoping we’re among them! 💚🫶
I love the addition of 'at the moment',I will try to remember that. I also use 'yet' a lot. Eg. I am not pain free yet! I am counting down the days to menopause now I'm 47 and trusting my symptoms will disappear entirely. Just wish I had been aware that they might ramp up during perimenopause - they did immensely - so I might have been more prepared/looked after myself better beforehand x
Hindsight is a wonderful thing! We can only do the best that we know how to with the information we have now. Easier said than done, I think I need to take a spoonful of my own advice. I feel like endo is very much that, wishing I’d done more sooner! Xx
P.s. I don’t know if this decluttering initiative is one that speaks to you (I know personally I’d struggle to do this once a day but could perhaps manage weekly 😆):
Woe! Thank you for sharing. This looks intense! I could probably manage the first week or so then things might start to get a bit tricky 😆 I am going to give it a go tho 👊
Thanks Amber, you are so right about blame being culturally ingrained, I'm on such a journey learning to let go of that! It's just finding a balance isn't it with positivity and realistic hope, I certainly don't want to sound pessimistic because I'm actually not. I absolutely don't think you're not sensitive to it all, I just wanted to bring in the long term chronic illness perspective and how that can be different xx Hope that makes some sort of sense!
Absolutely 💯
I can see this “She reminds me that when I first came to see her I was deep, deep in despair and hopelessness and I have come a long way even if it doesn’t feel like it, even if I can’t see it.”it’s a very long way that you have come. I see this often in people I work with, first before they. It doesn’t often take that much longer for the person to then be able to see it. Change is happening. Transformation awaits.
Also, chronic illness is “3 months or more”. I’ve no idea where “life sentance” comes from but I appreciate it is embodied by the many and the message many of us receives. But the true definition is “3 months or more”. Meaning the possibility for a chronic period to end is not only real, it’s a cycle I’ve broken many times - whether chronic pain, fatigue, depression, anxiety, binging. Etc etc etc. it’s very possible. It’s just for some reason we’ve been sold the opposite of it’s truth xxx
Thank you Amber for the words of encouragement. I am deeply encouraged that you see it too. What I recognise now is my need for pacing, supporting myself in not returning to push, push, push. I am embracing a slow transformation! Accepting everything won't manifest in an instant.
Also thank you for this defining of the term 'chronic illness'. I did not know about the 3 month thing and my window of hope opens a little wider. It is fascinating the things we are led to believe that are not true xx
Glad you are so encouraged by it 🙏😍 great lesson to learn (pacing and letting go of the push/force energy). The language we use is so important - I’ve recently realised that I did not follow the control, manage, fix, cure philosophy. This really stood me apart on my healing journey because recognising that it wasn’t going to be instant helped me stay true to me, my newfound beliefs (I matter, my health matters) and weather the relentless storms, it being a non-linear journey and so much of the unknown.
I desperately want to write a post called the incurable cure around all this but the words just are not there for me to fully express and articulate what it is I want to say. But the chronic thing I understood immediately (because I had to google it so I could be sure that all the repeating I had to do to my neurologist was accurate). It’s only in the last year I’ve realised people in the chronic illness community refer to it as a life sentence and often affirm “I am ill for life. I will never get better”. Its the words, thoughts, feelings and beliefs that have the most power over our reality, not the other way around x
I think it is also important to hold space for those of us who have been ill for a very long time. I have only recently labelled myself as chronically ill, I definitely have phases of being better than I am at the moment but I have not been well for decades and I have very much rested, meditated, changed diet, reduced stress etc etc etc If I say it is a life sentence (not that I tend to) then it wouldn't mean I don't have hope of improvement because I do. But after 30 years of this I am not going to climb mountains or run marathons and that is not a failing on my part it is the reality of these illnesses. I love your hope and positivity Amber and it is definitely a good thing and it spurs me on to keep aiming for improvement but I also don't want to beat myself up and feel like a failure when it doesn't happen. This year has been hard.
Thank you so much for your honesty and enquiry here. It helps me to hear your words and thoughts. I am very much between the belief of it will get better, I can turn this all around and also the belief thought that maybe it won't ever get fully better, maybe this is my life from now on and somehow I need to learn to be okay with it and accept it. It feels like a very fine balance, a curtain continually shifting in the breeze. I wish I gave myself more time to sit with my beliefs, hopes and fears but also recognise how I run from doing just this because I am deeply afraid.
Yes it is definitely a fine balance (a curtain continually shifting in the breeze is a great line) I think an element of acceptance of where we are at the moment and a hopeful positivity for improvement is helpful, how far the improvement goes is the unknown scary bit. I am aiming for getting back to a more liveable level than I'm at, where I can see friends, go for walks and go out sometimes and be able to pace my energy successfully rather than be on this rollercoaster of unpredictable pain and exhaustion! I've been ill for 30 years but this year is much worse than I've had for 25 years, getting back to where I was would be good. I hope you see improvement soon xx
Thank you. That is an incredibly long time to be on that rollercoaster. Trusting that you will get back to where you were soon. X
Absolutely. You make many valid points - I love that you say “it is not a failing on my part” and the awareness you have of not wanting to feel like a failure. Tied in with acknowledgement of how hard this year has been. Carrying blame feels culturally ingrained in us and is a massive part of healing in and of itself.
Thank you for the nudge in highlighting the need to hold space for those who have been chronically ill for a very long time. I apologise if I didn’t/don’t come across as sensitive to that.
Oops, I replied to this Amber but it's come out elsewhere on the thread x
A fantastic piece of writing and although I don’t have anyone dependent on me I heavily relate with the rest of what you said.
I also was going to say what Amber said about the chronic word, incurable and life long are often words we hear with endo. But I like the idea of putting ‘At the moment’ At the end of that as there’s so much we don’t know yet and so many years ahead of us.
Once we pass that threshold of menopause, many or even most women with endo experience less symptoms. Here’s to hoping we’re among them! 💚🫶
I love the addition of 'at the moment',I will try to remember that. I also use 'yet' a lot. Eg. I am not pain free yet! I am counting down the days to menopause now I'm 47 and trusting my symptoms will disappear entirely. Just wish I had been aware that they might ramp up during perimenopause - they did immensely - so I might have been more prepared/looked after myself better beforehand x
Hindsight is a wonderful thing! We can only do the best that we know how to with the information we have now. Easier said than done, I think I need to take a spoonful of my own advice. I feel like endo is very much that, wishing I’d done more sooner! Xx
Great piece of writing, I feel so much of it 💕
It's tough isn't it? The emotions are so big and yet we really don't talk about them enough. X
P.s. I don’t know if this decluttering initiative is one that speaks to you (I know personally I’d struggle to do this once a day but could perhaps manage weekly 😆):
https://open.substack.com/pub/heartleap/p/1st-october-the-minimalist-experiment?r=1fqnxh&utm_medium=ios
Woe! Thank you for sharing. This looks intense! I could probably manage the first week or so then things might start to get a bit tricky 😆 I am going to give it a go tho 👊