You are both absolutely right that surviving is its own form of purpose and service in circumstances like these. I have moderate ME/CFS and previously had other life-threatening stuff that’s now under control. I feel grateful for where I am and am slowly recovering from the ME/CFS too (I’m part of a decent online recovery mentorship programme). Even as I’ve mostly come to terms with my diversions in life it is still so meaningful to read your versions, and to feel your humanity shining through so much brighter than the illnesses. Thank you for this, and I had my crossed fingers for improvement to the mix too. ❤️
What a wonderful exchange of letters. It’s no coincidence that you found each other. My mom has CFS from long term Covid. And my son had chronic migraines and had Chiari Decompression surgery.
Wishing you both healing of your conditions. 🙏🙏🙏 Looking forward to future letters.
Thanks both. It's not the most enjoyable sat nite I've had in my life (I've had a lot) but as a chronic ill health, marooned at home person, dentification with others in this category most def gives me 'strength. The fact we do service for each other is beautiful. I chat with people who can't use their voice on the phone, have Accessibility issues of various kinds and I love that God brings me to people in the shadows to aid that person not to feel so alone, cause well I know it well and others do that for me.
Funny... I'm a naturally funny person and it used to often surprise me when people would laugh at something I was saying.
I love daily situational humour, you know just about human stuff. I live fooling around esp dancing, using body language and facial expressions. Sometimes I have a bit of energy for that stuff and I fool around in the kitchen window reflection.
I spoke with a friend the other wk and she had me laughing, a deep body experinece .. Oh my, it was so good. I said 'it's so good to laugh' she replied 'oh yeah we gotta have a laugh. I thought um not much of that happens around here. You see I can't have any friends visit I'm too unwell (moderate severe M. E cfs. So it's me, God, the phone and screen oh and my homehelps.
Thanks for the analogy idea.. It got me thinking of what mine is. As brutal as m. E cfs can be for me I've never really been mad at it. I get frustrated at limitations but I'm not mad at the condition per se. What came to mind was that she is this pink, fluffy and v delicate cartoon type character. I'm gonna explore her more using art so she can come fully onto the stage. She is the product of a nervous system damaged by cruelty as a younger girl, yrs of addiction, an owner who ran around like a loon doing various careers and geographicals, a people pleaser and caretaker and a spiritually bancrupt gal... Oh and apparently under lying viruses that have got re activated (Ebv being a common one for us).
Fast forward and she is a crumpled, delicate, burnt out, sweet thing. The chronic illness is actually my saviour I'm just not fully saved yet... But the sign reads 'work in progress'.
Hello. I am always amazed at how, in spite of your health frustrations you find ways to be supportive of the world around you!! And your sharing is helpful to those of us who are not as challenged to appreciate our lives and to work harder to be supportive of those around us for we really don't know who our strength might help!!!
Dear Natalie and Hal, thank you for sharing your journeys with the world. It is so important for people to understand that all disabilities are not visible. Everyone has a story. The more we share, the more we come to understand and love each other. Please continue as long as you are able. Your strength and wisdom and honesty fills me with hope and love. Peace to you both, Annette
Wow. This was so eye-opening. I can't deny that it made me extremely sad to hear you both talk about your illnesses.
Natalie, I thought of you yesterday as I laid in darkness with the worst migraine I've experienced yet. I literally wrote a note and left it on my kitchen counter in case I died in my sleep and never woke up. That's how badly it hurt. For the first time ever, I was afraid a headache was going to be my demise.
So, I can't imagine getting them chronically. I don't even know what the frequency would have to be in order to say "chronic."
On the bright side...you ARE funny! That's what I appreciate most about reading your content!
Oh my, sounds rough! I tend to forget how badly migraines suck until I’m having one. I guess my memory has developed high selectivity as a coping mechanism 😅 But to answer your question, chronic is defined as 15 headache days a month, with at least half of those days being migraines. As to where headache ends and migraine begins…that’s a hard boundary to discern!
Well if I had to go through what I did yesterday, 15 times this month I'd probably off myself. I can't imagine! I've been on a wait list with the neurology clinic here (I'm Canadian) for almost a year. It's at a point now where it distinctly affects my life...I guess just not as often as it does for you. Hugs girl...keep laughing (only when it doesn't hurt) 😋
Thank you for sharing! I have so many feelings about hearing about this horrid illness. Mostly fear is what I feel. Especially when I share my history of this disease. It’s hard to share and be oprr we n and vulnerable but it’s especially bad to try and share with someone who doesn’t understand. I understand. I send good thoughts beyond the realm of living in these bodies! ✨✨✨✨✨✨✨
What a gracious, beautiful, and thought-filled exchange. Thank you both for sharing the details of your lived experiences. I've learned so much. Your collective courage is humbling.
Really good article Hal. Im glad you have a new friend. One thing I hear in all the people you have been talking to that are battling cronic illness is hope and belief in a better life in the future. Many think of this as heaven. I do. Keep that hope and yearning alive in yourself. God is right there with us. I love you my pal Hal.
You are both absolutely right that surviving is its own form of purpose and service in circumstances like these. I have moderate ME/CFS and previously had other life-threatening stuff that’s now under control. I feel grateful for where I am and am slowly recovering from the ME/CFS too (I’m part of a decent online recovery mentorship programme). Even as I’ve mostly come to terms with my diversions in life it is still so meaningful to read your versions, and to feel your humanity shining through so much brighter than the illnesses. Thank you for this, and I had my crossed fingers for improvement to the mix too. ❤️
What a wonderful exchange of letters. It’s no coincidence that you found each other. My mom has CFS from long term Covid. And my son had chronic migraines and had Chiari Decompression surgery.
Wishing you both healing of your conditions. 🙏🙏🙏 Looking forward to future letters.
Thanks so much for reading!
Thank you both for sharing your letters!
I loved reading this! Both of you! i’m gobsmacked I don’t know what to say, all I know is that I really enjoyed reading this.
Thank you! This was Hal’s idea obviously, as it was a good one.
Listening in on this Sat nite from a rainy uk.
Thanks both. It's not the most enjoyable sat nite I've had in my life (I've had a lot) but as a chronic ill health, marooned at home person, dentification with others in this category most def gives me 'strength. The fact we do service for each other is beautiful. I chat with people who can't use their voice on the phone, have Accessibility issues of various kinds and I love that God brings me to people in the shadows to aid that person not to feel so alone, cause well I know it well and others do that for me.
Funny... I'm a naturally funny person and it used to often surprise me when people would laugh at something I was saying.
I love daily situational humour, you know just about human stuff. I live fooling around esp dancing, using body language and facial expressions. Sometimes I have a bit of energy for that stuff and I fool around in the kitchen window reflection.
I spoke with a friend the other wk and she had me laughing, a deep body experinece .. Oh my, it was so good. I said 'it's so good to laugh' she replied 'oh yeah we gotta have a laugh. I thought um not much of that happens around here. You see I can't have any friends visit I'm too unwell (moderate severe M. E cfs. So it's me, God, the phone and screen oh and my homehelps.
Thanks for the analogy idea.. It got me thinking of what mine is. As brutal as m. E cfs can be for me I've never really been mad at it. I get frustrated at limitations but I'm not mad at the condition per se. What came to mind was that she is this pink, fluffy and v delicate cartoon type character. I'm gonna explore her more using art so she can come fully onto the stage. She is the product of a nervous system damaged by cruelty as a younger girl, yrs of addiction, an owner who ran around like a loon doing various careers and geographicals, a people pleaser and caretaker and a spiritually bancrupt gal... Oh and apparently under lying viruses that have got re activated (Ebv being a common one for us).
Fast forward and she is a crumpled, delicate, burnt out, sweet thing. The chronic illness is actually my saviour I'm just not fully saved yet... But the sign reads 'work in progress'.
"The illness is my savior" - I like that. ❤️
Loved listening to you and Natalie. You both inspire me. Sending you peace and love from West Virginia.
Thanks Todd!
Loved this exchange, Hal. Sending wishes for peace and relief to you both.
Hello. I am always amazed at how, in spite of your health frustrations you find ways to be supportive of the world around you!! And your sharing is helpful to those of us who are not as challenged to appreciate our lives and to work harder to be supportive of those around us for we really don't know who our strength might help!!!
Thank you, Janee. ❤️
Dear Natalie and Hal, thank you for sharing your journeys with the world. It is so important for people to understand that all disabilities are not visible. Everyone has a story. The more we share, the more we come to understand and love each other. Please continue as long as you are able. Your strength and wisdom and honesty fills me with hope and love. Peace to you both, Annette
Hi Annette. thanks for your comment. See you soon hopefully. Hal
Yes, you will
I am honored
Thank you both for sharing your writing
Wow. This was so eye-opening. I can't deny that it made me extremely sad to hear you both talk about your illnesses.
Natalie, I thought of you yesterday as I laid in darkness with the worst migraine I've experienced yet. I literally wrote a note and left it on my kitchen counter in case I died in my sleep and never woke up. That's how badly it hurt. For the first time ever, I was afraid a headache was going to be my demise.
So, I can't imagine getting them chronically. I don't even know what the frequency would have to be in order to say "chronic."
On the bright side...you ARE funny! That's what I appreciate most about reading your content!
Oh my, sounds rough! I tend to forget how badly migraines suck until I’m having one. I guess my memory has developed high selectivity as a coping mechanism 😅 But to answer your question, chronic is defined as 15 headache days a month, with at least half of those days being migraines. As to where headache ends and migraine begins…that’s a hard boundary to discern!
Well if I had to go through what I did yesterday, 15 times this month I'd probably off myself. I can't imagine! I've been on a wait list with the neurology clinic here (I'm Canadian) for almost a year. It's at a point now where it distinctly affects my life...I guess just not as often as it does for you. Hugs girl...keep laughing (only when it doesn't hurt) 😋
Best of luck in getting off the waitlist! The waiting is the most excruciating part imo.
Thank you for sharing! I have so many feelings about hearing about this horrid illness. Mostly fear is what I feel. Especially when I share my history of this disease. It’s hard to share and be oprr we n and vulnerable but it’s especially bad to try and share with someone who doesn’t understand. I understand. I send good thoughts beyond the realm of living in these bodies! ✨✨✨✨✨✨✨
What a gracious, beautiful, and thought-filled exchange. Thank you both for sharing the details of your lived experiences. I've learned so much. Your collective courage is humbling.
Really good article Hal. Im glad you have a new friend. One thing I hear in all the people you have been talking to that are battling cronic illness is hope and belief in a better life in the future. Many think of this as heaven. I do. Keep that hope and yearning alive in yourself. God is right there with us. I love you my pal Hal.