I think it's worth it to point out that troops don't necessarily know how to rally at first. Frankly, I don't think sickies (let me know if that's not the right word. It's the one I use in my life) know what to even ask for at first. So the troops are going to struggle to learn.
Supporting a sick person can be a huge question mark at first. You can know that they have food issues, but it can be a bunch of unknowns. A well-considered gifted food might just leave your favorite sickie praying to the gods of mercy while hanging onto the floor for dear life. You can come over to clean and it seems fine, but they end up with a migraine a few hours after you leave. Was it the cleaning, was it just gunna happen? You go on the Super Easy hike and it's fun, but... they get worse a few days later. Early failures require a lot of fortitude to push through. Totally demoralizing for the troops to fight and not win.
Looking back, a rally in year one was bravado fueled by a misplaced belief that we could so dramatically overdo it that it alone would be the cure, and strategy spawned from comically wrong misinformation born of bad science (but we didn't know that yet.) A rally in year ten is done by veterans who are informed and resolute, people who know that the effort today might trigger illness tomorrow, but it's still appreciated a few weeks from now, and that's a win. But it takes a long time to learn. And veteran troops know that the illness will morph too, they know that the strategy remains but the tactics have to shift. They know that learning that is also a win! But that is a tall hill to climb.
It doesn't necessarily take years to rally the troops. But it does take years for them to form a legion of knowledgeable help. You can't really start too soon.
This is exactly it, or at least one part of it. The other half is *how* we the sick ask for help (often not realizing...we think we are, but we aren't.) I'm going to do a whole post about it!
I do think it takes time for everyone to accept new circumstances (most of all, the sickie). It takes time to dismantle the image of your loved one as healthy as capable when you deeply want them to be.
Absolutely! Investing in support—tools, services, or outsourcing— really helps save energy and can boost productivity. When I had long hair, washing it would be so exhausting! For a while, I visited the hairdresser to get it washed, and it made a big difference in my energy levels so that I could still work and feel more presentable for meetings. Also, love your examples of community care 🩷
Also, unrelated, but if any fellow chronically ill people ever want to chat skincare when you have MACS, rosacea, eczema and hormonal acne I am always down for it! My poor kiddo inherited the eczema/allergies and teaching him how to care for his skin in his teen years has been interesting!
Oof. I can't say this is an area I know much about...my skin does seem directly tied to my gut but I haven't gotten that remotely sorted. At the worst of my eyes-peeling-off issues this summer, though, getting into Honest Shampoo (fragrance free) and condish seemed to help! Plus it's available at Target, which made things easier. Wishing happier skin to you and your son!
Would you feel comfortable putting a link to a wishlist/‘buy you a coffee’ fund? I find these posts to be super validating and while I have the means to support my fave creators I try to do so.
Aw thank you so much, Amy! This is actually the first post I *didn't* make my gift registry or coffee fund obvious at the end...thank you for prompting me to put it back. Done!
Just a thought- I don’t know the nature of your illness or those fragrances, but they may be adding to your sick load. Unless they are made w essential oils most contain petroleum products including things like glycols and polysorbates. Many are carcinogens and/or will trigger immune system and headaches.
Thank you for this thought! I am sensitive to certain fragrances and on high-MCAS days I've asked my partner to skip cologne just in case. I didn't use any until last year and didn't notice any change starting, other than it just makes me happy to smell them! I figure with MCAS, it might not last forever. Enjoying them while I can but appreciate the heads up!
I have so many hacks they’re hard to list, but having a vertical keyboard for wrist issues is one.
Carpal tunnel folks—vertical keyboards are incredible!! Very expensive but worth the investment.
I created a vertical trackpad by simply propping an Apple trackpad between a stapler and a very heavy, fancy metal desk paperweight I bought at a rummage sale. Cheap-o solution.
Amazon has tons of options for “foot mouse” and “vertical mouse.” Clicking is not easy for some of us! Let your foot click!
Can’t hold a book? You know what can? A music stand!
While surprisingly lightweight, they usually hold heavy books. Often easy to find at church rummage sales for a few bucks but also not terribly expensive on Amazon. Incredibly versatile, so you can get just the right height and viewing angle.
If you have head/neck pain, does it get worse if you look down as opposed to look up?
I have this problem, and I’ve used very weird methods to solve it.
I put my music stand on a desk and when I read, the book is at absolute eye-level. I never look down to read a book.
I see clients for Internal Family Systems sessions and I can’t look down even one inch from eye-level or I get neck pain.
But sometimes clients are shorter than me.
Solution: I built a platform that was about 6 feet long by 4 feet wide, about 14 inches up off the ground using wood boards. I covered it with fabric. Then I put my client’s chair up on the platform, and my chair was on the floor. So all my clients had to sit on a throne.
When I had couples, I had to build a second throne for the second chair for the second client!
That was pretty odd looking, but you know what, who cares. My clients didn’t.
Oof, I had a "can't look down for even an inch" year. I feel this. Thank you so much for all these ideas! (When people say sick/disabled people "just don't want to work"...I'm pointing them to this example of the rampant resourcefulness and determination here. Yes. We. Do.)
Substack won't let me drop a link here in the comments, but in my archive it's "How to find discounts that shouldn't exist (without feeling like a shameless mooch) Part 1: WHOMST to ask" on February 8th. (It's also the first link in the Part 2 article, where it says "last week".) So sorry for the tough day—I feel you!
It's not your brain fog! I hit the wrong link. Fixed now...and I'll also throw them here! Thanks for bringing this to my attn.
At a busy checkout before the total rings in:
“I just wondered if I qualified for any discounts?” (This does sometimes get you a store credit card offer—pass.)
On a customer service chat:
“Is there any way you could help me save more on this bill?” (Customer service workers are there to help! Magically, my car insurance reduced.)
Emailing a company before you buy:
“I’d really love to try your product. Do you have any discount codes or specials coming up?” (A microbiome test company kindly gave me a 20% off code just for asking.)
Talking to the hospital financial department:
“I’ve heard there are assistance programs and discounts. Could we discuss options for my bill, please?” (As I said in Part 1, one of my greatest life regrets is not finding out I qualified for FULL forgiveness for years on a modest salary, after it was too late.)
I think it's worth it to point out that troops don't necessarily know how to rally at first. Frankly, I don't think sickies (let me know if that's not the right word. It's the one I use in my life) know what to even ask for at first. So the troops are going to struggle to learn.
Supporting a sick person can be a huge question mark at first. You can know that they have food issues, but it can be a bunch of unknowns. A well-considered gifted food might just leave your favorite sickie praying to the gods of mercy while hanging onto the floor for dear life. You can come over to clean and it seems fine, but they end up with a migraine a few hours after you leave. Was it the cleaning, was it just gunna happen? You go on the Super Easy hike and it's fun, but... they get worse a few days later. Early failures require a lot of fortitude to push through. Totally demoralizing for the troops to fight and not win.
Looking back, a rally in year one was bravado fueled by a misplaced belief that we could so dramatically overdo it that it alone would be the cure, and strategy spawned from comically wrong misinformation born of bad science (but we didn't know that yet.) A rally in year ten is done by veterans who are informed and resolute, people who know that the effort today might trigger illness tomorrow, but it's still appreciated a few weeks from now, and that's a win. But it takes a long time to learn. And veteran troops know that the illness will morph too, they know that the strategy remains but the tactics have to shift. They know that learning that is also a win! But that is a tall hill to climb.
It doesn't necessarily take years to rally the troops. But it does take years for them to form a legion of knowledgeable help. You can't really start too soon.
This is exactly it, or at least one part of it. The other half is *how* we the sick ask for help (often not realizing...we think we are, but we aren't.) I'm going to do a whole post about it!
I do think it takes time for everyone to accept new circumstances (most of all, the sickie). It takes time to dismantle the image of your loved one as healthy as capable when you deeply want them to be.
Absolutely! Investing in support—tools, services, or outsourcing— really helps save energy and can boost productivity. When I had long hair, washing it would be so exhausting! For a while, I visited the hairdresser to get it washed, and it made a big difference in my energy levels so that I could still work and feel more presentable for meetings. Also, love your examples of community care 🩷
Love this!! I can’t chop food so I need help, and accepting that other people’s hands / energy can do what yours can’t is pivotal to success!!
Also, unrelated, but if any fellow chronically ill people ever want to chat skincare when you have MACS, rosacea, eczema and hormonal acne I am always down for it! My poor kiddo inherited the eczema/allergies and teaching him how to care for his skin in his teen years has been interesting!
Oof. I can't say this is an area I know much about...my skin does seem directly tied to my gut but I haven't gotten that remotely sorted. At the worst of my eyes-peeling-off issues this summer, though, getting into Honest Shampoo (fragrance free) and condish seemed to help! Plus it's available at Target, which made things easier. Wishing happier skin to you and your son!
Would you feel comfortable putting a link to a wishlist/‘buy you a coffee’ fund? I find these posts to be super validating and while I have the means to support my fave creators I try to do so.
Seeing your Meatscon come through made my day, Amy. You're an absolute glimmer. Thank you so much.
Aw thank you so much, Amy! This is actually the first post I *didn't* make my gift registry or coffee fund obvious at the end...thank you for prompting me to put it back. Done!
Just a thought- I don’t know the nature of your illness or those fragrances, but they may be adding to your sick load. Unless they are made w essential oils most contain petroleum products including things like glycols and polysorbates. Many are carcinogens and/or will trigger immune system and headaches.
Thank you for this thought! I am sensitive to certain fragrances and on high-MCAS days I've asked my partner to skip cologne just in case. I didn't use any until last year and didn't notice any change starting, other than it just makes me happy to smell them! I figure with MCAS, it might not last forever. Enjoying them while I can but appreciate the heads up!
I have so many hacks they’re hard to list, but having a vertical keyboard for wrist issues is one.
Carpal tunnel folks—vertical keyboards are incredible!! Very expensive but worth the investment.
I created a vertical trackpad by simply propping an Apple trackpad between a stapler and a very heavy, fancy metal desk paperweight I bought at a rummage sale. Cheap-o solution.
Amazon has tons of options for “foot mouse” and “vertical mouse.” Clicking is not easy for some of us! Let your foot click!
Can’t hold a book? You know what can? A music stand!
While surprisingly lightweight, they usually hold heavy books. Often easy to find at church rummage sales for a few bucks but also not terribly expensive on Amazon. Incredibly versatile, so you can get just the right height and viewing angle.
I have dozens more but I’ll stop there! 😊
Nooooo keep going!! (Seriously, this could be a great article. I've never heard of some of this stuff!) Thank you so much for these ideas!
Ha ha ha! Okay a few even weirder ones:
If you have head/neck pain, does it get worse if you look down as opposed to look up?
I have this problem, and I’ve used very weird methods to solve it.
I put my music stand on a desk and when I read, the book is at absolute eye-level. I never look down to read a book.
I see clients for Internal Family Systems sessions and I can’t look down even one inch from eye-level or I get neck pain.
But sometimes clients are shorter than me.
Solution: I built a platform that was about 6 feet long by 4 feet wide, about 14 inches up off the ground using wood boards. I covered it with fabric. Then I put my client’s chair up on the platform, and my chair was on the floor. So all my clients had to sit on a throne.
When I had couples, I had to build a second throne for the second chair for the second client!
That was pretty odd looking, but you know what, who cares. My clients didn’t.
Oof, I had a "can't look down for even an inch" year. I feel this. Thank you so much for all these ideas! (When people say sick/disabled people "just don't want to work"...I'm pointing them to this example of the rampant resourcefulness and determination here. Yes. We. Do.)
Yeah I don’t care what it takes!!
I’ve used a wheelchair, I’ll find a way! Whatever it takes, it’s just another problem to solve.
Thank you! Forgive me but could you link to part one? I am having a really tough cognition day.
Substack won't let me drop a link here in the comments, but in my archive it's "How to find discounts that shouldn't exist (without feeling like a shameless mooch) Part 1: WHOMST to ask" on February 8th. (It's also the first link in the Part 2 article, where it says "last week".) So sorry for the tough day—I feel you!
Thank you very much!
Maybe it's my brain fog but I don't see the scripts in your link. Help a fellow sickie out?
It's not your brain fog! I hit the wrong link. Fixed now...and I'll also throw them here! Thanks for bringing this to my attn.
At a busy checkout before the total rings in:
“I just wondered if I qualified for any discounts?” (This does sometimes get you a store credit card offer—pass.)
On a customer service chat:
“Is there any way you could help me save more on this bill?” (Customer service workers are there to help! Magically, my car insurance reduced.)
Emailing a company before you buy:
“I’d really love to try your product. Do you have any discount codes or specials coming up?” (A microbiome test company kindly gave me a 20% off code just for asking.)
Talking to the hospital financial department:
“I’ve heard there are assistance programs and discounts. Could we discuss options for my bill, please?” (As I said in Part 1, one of my greatest life regrets is not finding out I qualified for FULL forgiveness for years on a modest salary, after it was too late.)