So…hope for me is weird. I don’t hope for things, but I don’t NOT hope for things either. I know that whatever is coming is going to come whether I want it to or not.
I guess my hope is for myself, that I’m doing as much as I can to keep myself as healthy as I can. I know I’m fighting a losing battle. Chronically altered and all that, but I at least tried to have hope in myself that I am doing the right thing for me
I think that's why is confuses me. Hoping is not an active thing or practice I take part in everyday, but like you 'I don't not hope' 😌. That really sums it up perfectly! I'm wondering if I need to incorporate it in my life, like others use prayer for example. I think the nearest thing I would get to is being in nature or writing in a journal. As long as you are doing what's best for yourself, I think that's what matters ☺️
I sometimes believe life is a lottery – you are either going to be lucky or unlucky and its beyond our control.
I think you have to have suffered in life to know what being grateful for small mercies is all about.
I have to ‘hope’ that if I am a lovely person, like you are, that there will be some moments in my life which will make me feel happier and I grab the happy moments, even the small ones, to keep me going. I have to accept that the dreams I had when I was a child, might not come true but have to readjust my goals to ‘feel’ as though they are possible i.e. hope.
I am angry when they say only ‘good people die young’ – what a load of nonsense cos that means I am not a good person – I suppose its out there so you feel that they died young for a purpose !! I suppose what else can you say to someone who has been taken away too early in life – how do you comfort someone in those terms. I suppose we all have to not take anything ‘good’ for granted and to cherish the ‘ happy’ moments because tomorrow is a different day,. With that we have to hope for another good experience in life.
Therefore is the word ‘tomorrow’ another way of saying ‘hope’ – as we don’t yet know what tomorrow will bring and we hope it will bring us something to make us feel happy, loved, needed, etc.
If someone says to you ‘I need you, I want your help, I want a hug’ – does that make you feel better about yourself and does that make you feel you have a purpose in life and therefore more hope– if only if its for that one minute in time? Does that give you ‘hope’ for a fleeting second.
There will b a Vicar of the Baptist Church moving in next door soon and I will certainly question him about why we need another religion? He doesn’t have problems with money and he is a successful businessman and will be sending his daughter to a private school. So if you don’t have any money worries, how can you really know what a poor person is going through? Yes, you can imagine it for five minutes but he will not be worrying every minute of the day how to pay the next bill or being cold in the winter. I almost feel that you can only preach to others if you have been through pain and suffering yourself. Otherwise surely they are hypocrites. Would it be worth following a religion and listening to them ‘preach’ on a website? If anything it will either make you feel at peace or make you angry so much so that you have a WILL to survive because of the anger they have instilled inside you?
Therefore ‘hope’ is multi-faceted and is like a diamond as it comes in many different disguises but ultimately it ‘keeps you going’ it is a raison d’etre in this world ….. Surely if you have no hope, you give up and leave the world??
Have you thought with your great blog that you could reach out to others who are suffering through another chronic illness so you can give them a ‘shared’ platform to talk about their hopes and fears or is it better to keep it just for your type of chronic illness?
The other day when I went for a walk with the U3A I found out that one of the walkers had an older gentleman in the family who was suffering from axial spondylitis and I wondered if you would give me permission to ask his relative if he would like to join your blog – would it be helpful to have someone who has suffered with the disability for longer? And a male? Just let me know and I will contact them as they, too, need to reach out.?
Surely ‘hope’ gives us a reason to live? Even if it comes in little blobs, the culmination of ‘hopelets’ stick together to make a bigger ‘hope’ in our brain. I feel as though our brain finds it easier to be negative than to be positive so maybe ‘hope’ in its uniquely positive format slowly addresses this balance and makes our bran into a more positive platform which is something we surely need. Like you, I believe that the mental and physical being is totally entwined and makes a difference to our health.
I remember all the happy moments your mum had and try not to think about the sad and cruel moments she experienced as we all want to remember your mum being happy as opposed to being sad. She had a hope that one day she would be pregnant one day but when the doctors gave her damming news and said it probably wouldn’t happen, she gave up ‘hope’ and didn’t use any contraceptives and hey ho – you know what happened so maybe that lack of ‘hope’ in that situation actually went from being negative and then to positive !!!
Have you thought about a ‘fund raising’ page? To help put more research into your chronic illness?
I think you would make a great person to give talks about life …… keep up with the brilliant blogs … :o) .
Ren is amazing and the irony of it all is that if he didn’t have his mental and physical pain, he might not have produced this more-meaningful music which is quite a difficult thing to come to terms with. Did he get Lyme’s disease from being bitten by a tick? His suffering is giving us ‘hope’ …I also believe the ‘geniuses’ in life are like this – good on them xx
Thank you for these valuable insights. I love the idea of 'hopelets' (how sweet) and catching as many of these as we can in this life ☺️ I definitely think community, nature and creativity are abundant with them, so that's where I'm trying to remain a lot of my time to help make me feel better.
And of course, feel free to share the blog. It's always nice to speak with others going through a similar experience. I'm sure they have a lot of wisdom to share!
I often wish I could turn my brain off and not think so deeply about everything, but then it's also a part of me I really like. I guess that's the constant struggle of having a sensitive soul 😌
I would like to direct these feelings more for good though, it's tricky knowing where to begin, but I do like the idea of raising money for charity though! Lots of love x
I love everything about this essay and the things that you are saying. Yes, yes, yes! I was shouting internally as I read it. The questions about hope, spirituality, holistic care, the shortcomings of allopathic medicine and the Dr's that can't know it all. I know I have to have hope because the days that are so bad that I feel utterly hopeless are the days that I really don't want to be here anymore X
Thank you Chloë! it was a hard one to write as it's not always a topic that's easy to discuss. Especially those feelings of utter despair that lead you to such thinking. But it's an important one. The things that keep us going. I'm so sorry you have to go through those hard times too. Some days feel like pure survival don't they. Just know you're not alone 💕 sending you lots of hugs x
Hi gorgeous, I wrote a long answer about an hour ago and then my iPad had a moment, and I lost it all. Anyway...thanks for this. I was quite shocked that you only get about 5 to 10 minutes with a doctor. In Switzerland we get a little longer, not much longer if we're talking specialists, but I've definitely spent over 30 minutes with my GP especially when discussing stuff, and he's admitted to me when he's out of his depth and will refer me to a specialist...who then will definitely not admit not having answers...although my neurologist did...he did say to me he didn't know why I still have an area in my back that feels like it has a dagger in it three years after the accident, and nothing shows on an MRI. But I've had absolute crap orthopedists tell me stuff is in my head and to go out for a run, despite me telling them I had random electric shocks! And an orthopaedic surgeon tell me I had a ruptured gluteus medius tendon that needed an operation...and then another whole team of orthopedic surgeons at a university hospital examine me for the same injury and tell me the tendon was intact and the pain could be temporarily fixed with an infiltration!
On hope: well, this weekend I was a little down in the dumps because my intestines were really bothering me, no D but insane bloating and discomfort despite not eating hardly anything, and the food thing is just ridiculous because people want just want to feed you! Socialising is built around food, and when you can't or don't want to eat because it causes you pain, and people insist "what can you eat? tell me what you can eat?!" and argh!!! and ask if I've tried flipping Alka Seltzer!! I mean helloooooo! That was my mama suggesting the Alka Seltzer! Bless her! I do feel like I'm closed myself off because of the pain and trauma related to the IBD, I don't see many people anymore - life before this revolved around horses, so it was mega active, and I basically lived at the stables day in day out! I rarely go anymore because, well, it makes me sad that I can't ride or look after my horse, and I'm sick of explaining myself, and for people not believing how debilitating it is. So the writing has totally taken over, and I consider myself lucky because I love it. I am constantly playing with words, writing poems on notes, working on my novel, fiddling! It's become a bit obsessive I suppose. I spoke to my gastroenterologist's assistant the other day; they suggest immune suppressants, but I want more information because I don't know whether they would fix one thing to muck up another, but good luck getting that info!!! So after this long and rambling response I suppose creativity gives me purpose which gives me hope. If that makes sense... Sorry!
Thank you so much Cesca for your reply. It made perfect sense ☺️ naughty technology for deleting your previous post though argh. I felt this article was a long winding way of saying creativity helped me too. Sometimes it's nice to just let your thoughts tumble out on the page and see where it takes you. Isn't it funny how writing has been so healing for us all. It just feels right. That's so true that it's very much linked with purpose. Something to give us focus and direction.
I'm sorry you've felt a bit blurgh recently. It's so hard trying to explain to people. I think them wanting to 'fix' things is mostly out of love, but it's never that easy. I'm in the same boat looking up information about immunosuppressants. They seem scary but many people I've spoken to say it's worth it. I guess it's finding the balance between would the disease be worse than those side effects. Tricky to know for sure.
I'm not sure if I've just had terrible luck with doctors or I'm just terrible at explaining what's happening in my body? I know I need to become more assertive (but not too much or they can get spooked 😆). Lots of love x
Hi Amanda, I thought I'd subscribed- no?! Rectified
Hi Ren is great. I saw the whole thing and wowser what talent and heart. The struggle, the intelligence.
I've no words except to say, I hear you and I'm bearing witness to everything you're sharing. I can relate to pieces. I wondered if you subscribe to Suleika Jaouad's The Isolation Journals. Her Sunday prompt: Prompt 303. Hot Peppers & Radical Acceptance, & Laura McKowen on the wisdom of no escape may interest you. Sending hugs xo
I received the message “Hope is a healing path” last year and I didn’t really get what it meant (I’ve been confused between the relationship hope has with belief and I’m super fascinated with the role belief plays with our wellness, or lack of.) you’ve really nailed it with this piece, described it to a tea.
It’s a lot of unlearning and relearning to do. Particularly on the religious and the spiritual side. I’ve discovered that on the road to recovery the 5 pillars are: physical, mental, emotional, spiritual and financial. And we’re yet to really wake up to this. Yet the book “my stroke of insight” mentions each pillar (bar the financial but I expect she had parents to make sure her needs were taken care of whereas many of us don’t have the combination of unconditional love and help with finances that this writer does - she’s a neuroscientist so like the rest of us, only by going through it did she really get it).
Thanks Amber. I'm still a bit confused though. Hope feels a bit 'woo woo' to me sometimes, like I need to be more practical instead, but I'm trying to lessen my grip on what my beliefs are. Go with the flow and all that. Not sure why that is so damn hard for me 😅 that's interesting about the different pillars, that makes a lot of sense. It's never one thing is it, you definitely need a balance of all of them to find healing. I guess my brain is trying to tackle the spiritual one recently. But maybe that's where I'm going wrong, spirituality is less in the brain and more in the heart/soul!
It is confusing and it doesn’t help that it’s so misunderstood. I think what helps with me is that there needs to be that balance amongst all pillars. Hope is foundational but without the practical, it won’t get you very far all by itself. We have so many beliefs, many of them disempowering. It’s trying to sort the empowering ones out from the disempowering ones. Which ones gift hope and which ones bring a dead end?
Resisting the flow of life is (in one part) linked to the root cause of migraine disease from an emotional perspective. So learning to go with the flow, work in flow has been massive and I don’t think it’s just those of us living with migraine that have been resisting the flow of life. For many of us that’s the way we have become. It’s not easy to undo (but it is possible).
You’ve hit the nail on the head with the spiritual being heart and soul! The brain (to me) is the mental/cognitive part. All parts make us whole. We are whole as we already are. It’s been a case of remembering again for me.
So…hope for me is weird. I don’t hope for things, but I don’t NOT hope for things either. I know that whatever is coming is going to come whether I want it to or not.
I guess my hope is for myself, that I’m doing as much as I can to keep myself as healthy as I can. I know I’m fighting a losing battle. Chronically altered and all that, but I at least tried to have hope in myself that I am doing the right thing for me
I think that's why is confuses me. Hoping is not an active thing or practice I take part in everyday, but like you 'I don't not hope' 😌. That really sums it up perfectly! I'm wondering if I need to incorporate it in my life, like others use prayer for example. I think the nearest thing I would get to is being in nature or writing in a journal. As long as you are doing what's best for yourself, I think that's what matters ☺️
I sometimes believe life is a lottery – you are either going to be lucky or unlucky and its beyond our control.
I think you have to have suffered in life to know what being grateful for small mercies is all about.
I have to ‘hope’ that if I am a lovely person, like you are, that there will be some moments in my life which will make me feel happier and I grab the happy moments, even the small ones, to keep me going. I have to accept that the dreams I had when I was a child, might not come true but have to readjust my goals to ‘feel’ as though they are possible i.e. hope.
I am angry when they say only ‘good people die young’ – what a load of nonsense cos that means I am not a good person – I suppose its out there so you feel that they died young for a purpose !! I suppose what else can you say to someone who has been taken away too early in life – how do you comfort someone in those terms. I suppose we all have to not take anything ‘good’ for granted and to cherish the ‘ happy’ moments because tomorrow is a different day,. With that we have to hope for another good experience in life.
Therefore is the word ‘tomorrow’ another way of saying ‘hope’ – as we don’t yet know what tomorrow will bring and we hope it will bring us something to make us feel happy, loved, needed, etc.
If someone says to you ‘I need you, I want your help, I want a hug’ – does that make you feel better about yourself and does that make you feel you have a purpose in life and therefore more hope– if only if its for that one minute in time? Does that give you ‘hope’ for a fleeting second.
There will b a Vicar of the Baptist Church moving in next door soon and I will certainly question him about why we need another religion? He doesn’t have problems with money and he is a successful businessman and will be sending his daughter to a private school. So if you don’t have any money worries, how can you really know what a poor person is going through? Yes, you can imagine it for five minutes but he will not be worrying every minute of the day how to pay the next bill or being cold in the winter. I almost feel that you can only preach to others if you have been through pain and suffering yourself. Otherwise surely they are hypocrites. Would it be worth following a religion and listening to them ‘preach’ on a website? If anything it will either make you feel at peace or make you angry so much so that you have a WILL to survive because of the anger they have instilled inside you?
Therefore ‘hope’ is multi-faceted and is like a diamond as it comes in many different disguises but ultimately it ‘keeps you going’ it is a raison d’etre in this world ….. Surely if you have no hope, you give up and leave the world??
Have you thought with your great blog that you could reach out to others who are suffering through another chronic illness so you can give them a ‘shared’ platform to talk about their hopes and fears or is it better to keep it just for your type of chronic illness?
The other day when I went for a walk with the U3A I found out that one of the walkers had an older gentleman in the family who was suffering from axial spondylitis and I wondered if you would give me permission to ask his relative if he would like to join your blog – would it be helpful to have someone who has suffered with the disability for longer? And a male? Just let me know and I will contact them as they, too, need to reach out.?
Surely ‘hope’ gives us a reason to live? Even if it comes in little blobs, the culmination of ‘hopelets’ stick together to make a bigger ‘hope’ in our brain. I feel as though our brain finds it easier to be negative than to be positive so maybe ‘hope’ in its uniquely positive format slowly addresses this balance and makes our bran into a more positive platform which is something we surely need. Like you, I believe that the mental and physical being is totally entwined and makes a difference to our health.
I remember all the happy moments your mum had and try not to think about the sad and cruel moments she experienced as we all want to remember your mum being happy as opposed to being sad. She had a hope that one day she would be pregnant one day but when the doctors gave her damming news and said it probably wouldn’t happen, she gave up ‘hope’ and didn’t use any contraceptives and hey ho – you know what happened so maybe that lack of ‘hope’ in that situation actually went from being negative and then to positive !!!
Have you thought about a ‘fund raising’ page? To help put more research into your chronic illness?
I think you would make a great person to give talks about life …… keep up with the brilliant blogs … :o) .
Ren is amazing and the irony of it all is that if he didn’t have his mental and physical pain, he might not have produced this more-meaningful music which is quite a difficult thing to come to terms with. Did he get Lyme’s disease from being bitten by a tick? His suffering is giving us ‘hope’ …I also believe the ‘geniuses’ in life are like this – good on them xx
Thank you for these valuable insights. I love the idea of 'hopelets' (how sweet) and catching as many of these as we can in this life ☺️ I definitely think community, nature and creativity are abundant with them, so that's where I'm trying to remain a lot of my time to help make me feel better.
And of course, feel free to share the blog. It's always nice to speak with others going through a similar experience. I'm sure they have a lot of wisdom to share!
I often wish I could turn my brain off and not think so deeply about everything, but then it's also a part of me I really like. I guess that's the constant struggle of having a sensitive soul 😌
I would like to direct these feelings more for good though, it's tricky knowing where to begin, but I do like the idea of raising money for charity though! Lots of love x
I love everything about this essay and the things that you are saying. Yes, yes, yes! I was shouting internally as I read it. The questions about hope, spirituality, holistic care, the shortcomings of allopathic medicine and the Dr's that can't know it all. I know I have to have hope because the days that are so bad that I feel utterly hopeless are the days that I really don't want to be here anymore X
Thank you Chloë! it was a hard one to write as it's not always a topic that's easy to discuss. Especially those feelings of utter despair that lead you to such thinking. But it's an important one. The things that keep us going. I'm so sorry you have to go through those hard times too. Some days feel like pure survival don't they. Just know you're not alone 💕 sending you lots of hugs x
So so important to share all of it x
Hi gorgeous, I wrote a long answer about an hour ago and then my iPad had a moment, and I lost it all. Anyway...thanks for this. I was quite shocked that you only get about 5 to 10 minutes with a doctor. In Switzerland we get a little longer, not much longer if we're talking specialists, but I've definitely spent over 30 minutes with my GP especially when discussing stuff, and he's admitted to me when he's out of his depth and will refer me to a specialist...who then will definitely not admit not having answers...although my neurologist did...he did say to me he didn't know why I still have an area in my back that feels like it has a dagger in it three years after the accident, and nothing shows on an MRI. But I've had absolute crap orthopedists tell me stuff is in my head and to go out for a run, despite me telling them I had random electric shocks! And an orthopaedic surgeon tell me I had a ruptured gluteus medius tendon that needed an operation...and then another whole team of orthopedic surgeons at a university hospital examine me for the same injury and tell me the tendon was intact and the pain could be temporarily fixed with an infiltration!
On hope: well, this weekend I was a little down in the dumps because my intestines were really bothering me, no D but insane bloating and discomfort despite not eating hardly anything, and the food thing is just ridiculous because people want just want to feed you! Socialising is built around food, and when you can't or don't want to eat because it causes you pain, and people insist "what can you eat? tell me what you can eat?!" and argh!!! and ask if I've tried flipping Alka Seltzer!! I mean helloooooo! That was my mama suggesting the Alka Seltzer! Bless her! I do feel like I'm closed myself off because of the pain and trauma related to the IBD, I don't see many people anymore - life before this revolved around horses, so it was mega active, and I basically lived at the stables day in day out! I rarely go anymore because, well, it makes me sad that I can't ride or look after my horse, and I'm sick of explaining myself, and for people not believing how debilitating it is. So the writing has totally taken over, and I consider myself lucky because I love it. I am constantly playing with words, writing poems on notes, working on my novel, fiddling! It's become a bit obsessive I suppose. I spoke to my gastroenterologist's assistant the other day; they suggest immune suppressants, but I want more information because I don't know whether they would fix one thing to muck up another, but good luck getting that info!!! So after this long and rambling response I suppose creativity gives me purpose which gives me hope. If that makes sense... Sorry!
Thank you so much Cesca for your reply. It made perfect sense ☺️ naughty technology for deleting your previous post though argh. I felt this article was a long winding way of saying creativity helped me too. Sometimes it's nice to just let your thoughts tumble out on the page and see where it takes you. Isn't it funny how writing has been so healing for us all. It just feels right. That's so true that it's very much linked with purpose. Something to give us focus and direction.
I'm sorry you've felt a bit blurgh recently. It's so hard trying to explain to people. I think them wanting to 'fix' things is mostly out of love, but it's never that easy. I'm in the same boat looking up information about immunosuppressants. They seem scary but many people I've spoken to say it's worth it. I guess it's finding the balance between would the disease be worse than those side effects. Tricky to know for sure.
I'm not sure if I've just had terrible luck with doctors or I'm just terrible at explaining what's happening in my body? I know I need to become more assertive (but not too much or they can get spooked 😆). Lots of love x
Hi Amanda, I thought I'd subscribed- no?! Rectified
Hi Ren is great. I saw the whole thing and wowser what talent and heart. The struggle, the intelligence.
I've no words except to say, I hear you and I'm bearing witness to everything you're sharing. I can relate to pieces. I wondered if you subscribe to Suleika Jaouad's The Isolation Journals. Her Sunday prompt: Prompt 303. Hot Peppers & Radical Acceptance, & Laura McKowen on the wisdom of no escape may interest you. Sending hugs xo
I'm having a few glitches on Substack recently. It keeps unsubscribing me to some people which is strange 🤔 but anyhoo thanks for the (re)subscribe.
Oh lovely thank you for your kind words and also the recommendations! I will check those out ☺️ I hope you're doing ok x
I had that a while ago - de-cookie’d my history and that helped. Very welcome Amanda! Suleika is wonderful, and so is her husband Jon Batiste.
Thanks I’m tired but ok, it’s a very busy month outside of Substack. xo
I received the message “Hope is a healing path” last year and I didn’t really get what it meant (I’ve been confused between the relationship hope has with belief and I’m super fascinated with the role belief plays with our wellness, or lack of.) you’ve really nailed it with this piece, described it to a tea.
It’s a lot of unlearning and relearning to do. Particularly on the religious and the spiritual side. I’ve discovered that on the road to recovery the 5 pillars are: physical, mental, emotional, spiritual and financial. And we’re yet to really wake up to this. Yet the book “my stroke of insight” mentions each pillar (bar the financial but I expect she had parents to make sure her needs were taken care of whereas many of us don’t have the combination of unconditional love and help with finances that this writer does - she’s a neuroscientist so like the rest of us, only by going through it did she really get it).
Thanks Amber. I'm still a bit confused though. Hope feels a bit 'woo woo' to me sometimes, like I need to be more practical instead, but I'm trying to lessen my grip on what my beliefs are. Go with the flow and all that. Not sure why that is so damn hard for me 😅 that's interesting about the different pillars, that makes a lot of sense. It's never one thing is it, you definitely need a balance of all of them to find healing. I guess my brain is trying to tackle the spiritual one recently. But maybe that's where I'm going wrong, spirituality is less in the brain and more in the heart/soul!
It is confusing and it doesn’t help that it’s so misunderstood. I think what helps with me is that there needs to be that balance amongst all pillars. Hope is foundational but without the practical, it won’t get you very far all by itself. We have so many beliefs, many of them disempowering. It’s trying to sort the empowering ones out from the disempowering ones. Which ones gift hope and which ones bring a dead end?
Resisting the flow of life is (in one part) linked to the root cause of migraine disease from an emotional perspective. So learning to go with the flow, work in flow has been massive and I don’t think it’s just those of us living with migraine that have been resisting the flow of life. For many of us that’s the way we have become. It’s not easy to undo (but it is possible).
You’ve hit the nail on the head with the spiritual being heart and soul! The brain (to me) is the mental/cognitive part. All parts make us whole. We are whole as we already are. It’s been a case of remembering again for me.