It's stunning the support you've received both without and with asking ..
I've received almost nil support without asking and that has taken incredible humility and shame .
I've realised how much I was the helper in my previous life but didn't build an empire around me for me .
It's also made me realise that family really is where it's at if your lucky enough to have a caring one .
Ive also learnt what people say and what they do can often have a disparity .
Of course people have their own lives , problems and chores .
I've also learnt really what it boils down to is how much a person loves u and how much a person has a capacity to love through action.
If I don't sound too self inflating I've been an incredible loving friend , care manager and warrior to myself .
This is Def the hardest nursing I've done .
I've surrounded myself with psychological help, sponsers 2 , health professionals, home help, my church , people in my community , volunteer shopper and more recently a social worker yay !
I'm facing homelessness so as u can or can't imagine the paradox of that with someone that is 50% bedbound 100 % housebound .
I feel incredibly lucky . I'm incredibly supported by the UK government and don't have financial worries. Thank god imagine that on top of everything .
I've grown and changed incredibly and I'll be able to survive anything once I'm on the other side of severe m.e / CFS .sure .
I never felt fabulous about myself in the outside world but I do now !
I wasn't conditioned to get or ask for help . I was the helper . So in the world I've not really showed my vunerability . Even if I shared a problem I'll have the solution straight after .
This way of life teaches me now to drop my pride and lack of trust .
I also wanna say as much as I've needed to be the asker I've had many people to ask ! Grateful.
My homecarer is a friend of friend and her little dog has saved my life . My minister has been stunning and is always there when I reach out . God also brought a new neighbour a year ago . She has cancer and we have been a comfort and care to each other . She pops by the garden and we chat a while . We understand we both lack battery and are mindful of that . She is a great one for giving little gifts .
I also rallyed around who may be about when I move . I've got a whole team of people who may be able to help .
So asking for help isn't all bad. It's taught me people do care and can be relied on x
I literally have met hundreds (really, thousands) of people with ME/CFS over the years. I have never met anyone who had anywhere near the kind of help you've been blessed with. Many people live with family who resent them, and tell them there is nothing wrong with them. Many have no help at all. And I often run across people who are trying to raise funds to pay medical expenses, or to pay people to help them, or even get out of abusive situations at home. If you are interested, I can pass along the GoFundMe pages or pleas for help, and maybe you can highlight those in social media.
Thank you Tammy! Yes, I would love to highlight some of those people/pages on my social media. I’m going to keep your comment and read it next time I start feeling sorry for myself. H
Thanks for sharing Hal. As always your words fill and open my heart. Your vulnerability and love in your posts are of service to all who listen. There were some good reminders today for me as I navigate my relationship with caregiving roles in my family. Thank you ❤️
Hi Hal. I have been pretty much crashed out this year. I am glad that you have some support mate - it makes me think better of humans.
All 6 of my siblings gave me zero support - quite the opposite in fact. It hurt so much that I moved 1000km away from them, to get away from their abusiveness. I will no longer have their toxicity in my life. I have a 21 year old daughter who is a sociopath.
I very rarely hear from her, unless she has run out of money.
On a positive note, I do have a supportive partner who loves me very much. As I get sicker though, it is becoming more like a "carer" role, which is certainly different to how it was when we started.
I hope you continue to feel the love of your friends and daughter, and that your condition improves.
This morning I was not strong enough to read this week’s Substack. ……mostly because it started out with ‘Caroline crying……’. I am glad I gave it a listen. “ If at times we are somewhat stunned by the tempest, never fear; let us take breath, and go on afresh.” (Francis de Sales)
Wow - I see a lot of Caroline in Hallie. Wish I lived closer so I could make you some meals. Western MA to OH is a bit of a drive. Btw, as a fellow grammarian, had to giggle at the passive voice in the last sentence in the paragraph mentioning Mr. Pollack! (Was that intentional?)
Thanks Suzanne! It was a fun challenge to come up with a sentence that uses incorrect grammar. You should try it. :) BTW, I have a friend in Western Mass who has been living with severe ME/CFS for over 30 years. I can’t guarantee that she wants help, but she’s a very cool person and might appreciate a meal. Let me know if you’re interested. H
I'm glad you are so well supported. Despite your physical challenges you have a huge life and create value for a lot of people. Your network is amazing. Well done for creating it.
I love this post. I wish we all offered each other more help. I miss living with other people and all doing chores together. I was very excited a month ago when a friend asked me to come over and do some yard work with him.
Thanks so much, Atoosa. I appreciate a thought that you shared with Hallie (that she shared with me) - something about this being an exciting time of rebirth for me. I like that perspective. It’s not an easy one to hold, but I prefer it to the alternative. ❤️
It's stunning the support you've received both without and with asking ..
I've received almost nil support without asking and that has taken incredible humility and shame .
I've realised how much I was the helper in my previous life but didn't build an empire around me for me .
It's also made me realise that family really is where it's at if your lucky enough to have a caring one .
Ive also learnt what people say and what they do can often have a disparity .
Of course people have their own lives , problems and chores .
I've also learnt really what it boils down to is how much a person loves u and how much a person has a capacity to love through action.
If I don't sound too self inflating I've been an incredible loving friend , care manager and warrior to myself .
This is Def the hardest nursing I've done .
I've surrounded myself with psychological help, sponsers 2 , health professionals, home help, my church , people in my community , volunteer shopper and more recently a social worker yay !
I'm facing homelessness so as u can or can't imagine the paradox of that with someone that is 50% bedbound 100 % housebound .
I feel incredibly lucky . I'm incredibly supported by the UK government and don't have financial worries. Thank god imagine that on top of everything .
I've grown and changed incredibly and I'll be able to survive anything once I'm on the other side of severe m.e / CFS .sure .
I never felt fabulous about myself in the outside world but I do now !
I'm the bestest friend I've ever had 😊
Thinking on it though .
I wasn't conditioned to get or ask for help . I was the helper . So in the world I've not really showed my vunerability . Even if I shared a problem I'll have the solution straight after .
This way of life teaches me now to drop my pride and lack of trust .
I also wanna say as much as I've needed to be the asker I've had many people to ask ! Grateful.
My homecarer is a friend of friend and her little dog has saved my life . My minister has been stunning and is always there when I reach out . God also brought a new neighbour a year ago . She has cancer and we have been a comfort and care to each other . She pops by the garden and we chat a while . We understand we both lack battery and are mindful of that . She is a great one for giving little gifts .
I also rallyed around who may be about when I move . I've got a whole team of people who may be able to help .
So asking for help isn't all bad. It's taught me people do care and can be relied on x
Sometimes 🙂
Thank you Emma. I wish we were neighbors. ❤️
It wouldn't be any good cause I'd prob try and rescue u 😂
I literally have met hundreds (really, thousands) of people with ME/CFS over the years. I have never met anyone who had anywhere near the kind of help you've been blessed with. Many people live with family who resent them, and tell them there is nothing wrong with them. Many have no help at all. And I often run across people who are trying to raise funds to pay medical expenses, or to pay people to help them, or even get out of abusive situations at home. If you are interested, I can pass along the GoFundMe pages or pleas for help, and maybe you can highlight those in social media.
Thank you Tammy! Yes, I would love to highlight some of those people/pages on my social media. I’m going to keep your comment and read it next time I start feeling sorry for myself. H
You do help others! Your music reaches far and wide and brings so much joy and inspiration to many. Love you, brother.
Thank you, C
truly one of the bravest things we can do is ask for help. Thanks for this post, Hal.
Thank you!
Thanks for sharing Hal. As always your words fill and open my heart. Your vulnerability and love in your posts are of service to all who listen. There were some good reminders today for me as I navigate my relationship with caregiving roles in my family. Thank you ❤️
HI Tricia. Thank you so much for listening. :) H
Another great issue, Hal! And loved seeing Chris Martin there, great guy!
Thank you Leo. Yes… Chris is a gem.
Hi Hal. I have been pretty much crashed out this year. I am glad that you have some support mate - it makes me think better of humans.
All 6 of my siblings gave me zero support - quite the opposite in fact. It hurt so much that I moved 1000km away from them, to get away from their abusiveness. I will no longer have their toxicity in my life. I have a 21 year old daughter who is a sociopath.
I very rarely hear from her, unless she has run out of money.
On a positive note, I do have a supportive partner who loves me very much. As I get sicker though, it is becoming more like a "carer" role, which is certainly different to how it was when we started.
I hope you continue to feel the love of your friends and daughter, and that your condition improves.
Take care mate.
Wayne
Hi Wayne, I'm very sorry to hear this. I'm glad to have met you and I hope we can continue to support each other in some way from afar. Hal
Thank you for your beautiful posts, Hal. I hope you realize you're helping Leah by giving her the opportunity to help you! 💜
Thank you Kate. Leah has been a godsend.
Is it “David lied next to me,” “David lay next to me,” or “David lie next to me” or “David laid next to me”. ??
It's "David lay next to me."
Love, your language-nerd sister ...
I noticed that as I read the post for the first time, and was going to text you to correct you privately, but since you asked ... <3
This morning I was not strong enough to read this week’s Substack. ……mostly because it started out with ‘Caroline crying……’. I am glad I gave it a listen. “ If at times we are somewhat stunned by the tempest, never fear; let us take breath, and go on afresh.” (Francis de Sales)
Thanks mom. Keep those great quotes coming. ❤️
Wow - I see a lot of Caroline in Hallie. Wish I lived closer so I could make you some meals. Western MA to OH is a bit of a drive. Btw, as a fellow grammarian, had to giggle at the passive voice in the last sentence in the paragraph mentioning Mr. Pollack! (Was that intentional?)
Thanks Suzanne! It was a fun challenge to come up with a sentence that uses incorrect grammar. You should try it. :) BTW, I have a friend in Western Mass who has been living with severe ME/CFS for over 30 years. I can’t guarantee that she wants help, but she’s a very cool person and might appreciate a meal. Let me know if you’re interested. H
I'm glad you are so well supported. Despite your physical challenges you have a huge life and create value for a lot of people. Your network is amazing. Well done for creating it.
I love this post. I wish we all offered each other more help. I miss living with other people and all doing chores together. I was very excited a month ago when a friend asked me to come over and do some yard work with him.
Beautiful Hal. All of what you described…and your continued vulnerability. ❤️
Thanks so much, Atoosa. I appreciate a thought that you shared with Hallie (that she shared with me) - something about this being an exciting time of rebirth for me. I like that perspective. It’s not an easy one to hold, but I prefer it to the alternative. ❤️
Birthing process is hard for all. You are doing it so gracefully.