It’s one of the biggest fears chronically ill people face. The fear of a never ending flare. That a setback will result in a permanently reduced baseline. That the worst day will become our new normal
This is important reading. Of course folks who aren’t in the same boat don’t have any understanding of what we face. They don’t like reading pieces like this because it brings them down. However, for those of us who share the boat with you, we need pieces like this. My situation is somewhat similar and somewhat different than yours. However, I definitely know what it’s like to have to plan around a “new normal.” I am just grateful that I have the type of brain who can manage making those necessary contingency plans. I feel so much for folks who don’t have that kind of brain. Thx for writing this. If there are even just a handful of us who read it…you are still making an impact.
Thank you so much for this comment, I want you to know how much it means to me.
I’m always afraid to publish articles like this because as you said… most people don’t want to read them. They don’t want to think about it. I generally lose a ton of subscribers and that can be hard on the spoons.
It’s also why I think it’s so important. Our suffering matters. Our challenges matter. If more people understood what we face, the world would be a more compassionate place!
Yes - your suffering and challenges do matter and people need to understand what you have to deal with every day. Speaking for myself, I welcome such articles and want to read them 😊
Totally relate. I was looking through Facebook memories and realized I had a flare up in December of a previous year. Just like now. I was trying to figure out why December. Thanks for this article.
You’re so welcome! There’s also the phenomenon of the “October Slide” which is well documented among those with chronic illness. Experiencing flare ups that time of year is common, and for some it hits earlier and some it hits later.
The last three years running I’ve always flared between Christmas and New Years and I’ve never figured out why.
So many reasons. The darkening of days, changing of clocks,,weather changes, holiday stress, mushrooms bloom, birds migrate. For me personally I was deployed to war in September, build until January, then working for the post office with its inevitable overtime season. It’s almost a reflex now.
Wow, thank you for writing this piece. I’m so sorry to hear of your struggles. I rejoiced with you at the victories (new microwave, temporarily moving to a friend’s house when your A/C broke down) then felt the pain of more losses when these makeshift solutions fell apart.
I’m glad you’re feeling well enough to write again.
Please let me know if you have a “Buy Me A Coffee” button.
Omg, why not December? I can think of quite a few. But I won't. Yaye.
It took me decades to figure out why September often brought a 'slump/dull/ugh'. Once it dawned on me, it went away. So kewl stuff can happen. Probe gently. ❤️ 💙 💜
Thanks for sharing. I’m so sorry you’re going through this. I can kind of relate to some of what you’re talking about. I had a couple of strokes last year and man it’s tough after nine months of brain fog and weakness to pursue and keep going. Obviously, my symptoms are much different than yours, but Prayers are with you and wishing you the best.
This is SO me. I'm so glad you wrote this and will restack.
I am not "visibly disabled" as much as you, even though I have plenty of problems. But I can "pass", which really doesn't help and is counterproductive. Such glares I get when I go out to shop once a week and park in the blue space.
And of course, as an American, my insurance is going up to $1500 a MONTH. Where am I supposed to get that on a fixed income? And my October slide is still here.
Many gentle hugs back to you. Financial stress is so real for many of us who are sick & disabled & can’t work. And stress is a trigger. I’m in a similar situation with insurance & all my co-pays & deductibles went way up!! Sneaky. Much love ❤️
I just had an MCAS flare, too -- my first once since I started a GLP-1. It wasn't severe, but a good reminder I still need to mind what I eat and pay attention. It is a shitty disorder and I'm sorry you are struggling. I always feel like when I flare I am back at square one. Big hugs.
How long have you been on the GLP-1 if you don’t mind me asking? I’m very intrigued by their potential. I’m maxed out on stabilizers and H1s and H2s and still wasting away because my MCAS hits my gut so hard.
I totally thought i responded to this (adhd December brain sorry). I’ve been on it for a little over 5 months. I would talk to your doctor, but if you can’t keep weight on it may not be right. I’m also on Xolair and have been for almost six years, but I’ve spaced out my dosage to every two months.
Feel for ya ♡. Sharing the info is important to hear, so thank you for being willing to do so. It's not easy when there's hurting going on. Thanks for your posting.♡
Wow your article woke me Up!! I had no idea you were out there! I know nothing of your disease? Please elaborate, I am very verbal and I can pass along your story. The more people know the More they can help.
Omg. I remember when your microwave failed. All those appliances going at once is out of the ballpark. No wonder you had a bad flare up. I am glad you can write again. Autoimmune diseases are a demanding teacher. 💔❤️
Sending lots of gentle hugs. I'm hoping that you writing this means you are starting to pull out of this flare. Whenever I have enough good days to start questioning if it's my new normal, I never do, because in the past every time I've started to hope I've improved I come crashing down. I have been lucky that most of my crashes only last a few months at most (now marvelling at my use of 'lucky' to describe being in extreme pain and exhaustion, unable to enjoy life), so I don't always spiral into the 'what ifs', but I understand how easy it is to do. I also know how hard it is to completely stop worrying to actually rest properly, so well done for doing so.
Thank you for such a vulnerable and articulate piece. My heart ached with sad recognition of so much of what you described. I'm truly sorry that you are going through this.
I've lived with moderate to severe ME/CFS, POTS, and FM for 9 years. Last Summer, I had a glorious 4-month partial remission of the severity of my symptoms that was cut short by multiple unexpected hospitalizations and heart procedures in September/ October. I'm now in a flare that has me mostly in bed and trying not to panic that I'm back to this very low baseline. I'm beyond fortunate to have an amazing husband/caregiver and relative financial security, but I'm still struggling with this decline and the radical rest and acceptance that I know it requires.
Thank you for using so many spoons for your writing. It means more than I can say to see myself in your words and know that I'm not alone. I wish you speedy passage through your very difficult season.
I’m sorry that you have had such a difficult few months. Your writing about it is very inspiring to me, and I don’t have anything close to the health issues you experience. I appreciate your perspective on when to let go and allow rest to help you achieve a more positive baseline. I wish you continued strength and healing. You and your voice matter.
I relate to this all too well--particularly the domino effect of things outside your body going wrong as you're trying to navigate simply existing. Here's to those better days ahead.
I appreciate how open and honest you are about these things. Most people, especially those with a decent platform, put forth an image of having everything together and knowing exactly what they are doing. Especially lately, I imagine there are far more people struggling out there than most of us would think.
The cascading domino effect here cuts so deep, especially how one broken appliance triggers a whole systemic collapse when accessibility tools fail. What really hits is the insight about worrying more on bad days than celebrating good ones. We rarely ask "will this be my new normal?" when things go well. That asymmetry in thinking deserves more attension than it gets!
It has been over a week now, and I am ready to share my view on flares and their ilk
I contracted Polio in Summer of '52. One of the paralytic cases. Swam in a lake, where rich people dumped raw sewage into the lake instead of being civilized. That night, I could not get up the stairs to bed. My father complained the entire while but he carried be up and put me to bed.
The next day, a Sunday, I remember being in the doctor's office. Dad was in a suit, Mom was wearing her Sunday best, grey suit with a grey hat of a shape I cannot recall. Pillbox? The doctor explains that, yes, I had Polio. They had the ambulance come to the back door of the clinic, to not panic my parents. To take me directly to the hospital.
Then hospital memory, being in quarantine for two weeks with not a single explanation to my little self. Took a blood draw first thing, had to strap me down as they put the needle in by my elbow. Doctor says, "Don't worry, he's only four, he won't remember any of this" I really wanted to meet that doctor in my younger days. Whenever I got stressed my left arm would draw back and I had to hold it up with my right. It was decades before I found out why I did that. I finally stopped.
Then out of quarantine, large room with many cribs for the polio patients. Cribs. Not beds. Finally home, with Mom taking on PT duties. March of Dimes covered the hospital. Which I hadn't known about either.
So, why now? What have I got to share today? Well, Polio attacks the central nervous system, but it wasn't exactly how they thought back then. The virus killed 95% of my motor neurons. All of them. Look into motor neurons - they are everywhere. The 5% are all we have and we will never get more.
When does it become a problem? Well, when you're first hospitalized, then ~45y later. The body no longer has any backups. So. Systems fail. A little at a time over the years. But by 45 you are pretty sure things are not going well, and the docs will tell you it isn't going to get better. Ever.
It hasn't gotten better. I do less. That is how I survive. Walking, physical exercise of any form can cause a flare like reaction. Meaning I will be down for at least a day. More if I refused to pay attention. Which recalls my PT back then. It was riddled with "push through the pain" and "pain isn't going to stop you!" Still doesn't. Even when it should. I have to be present and aware that I am not taking care of myself in order to stop doing whatever I was up to. Doesn't always work.
While my flares are mild compare to many, I will never get better. Each year will be worse. Until there is nothing of me left.
For the anti-vax crowd, the clowns, the grifters, the misinformed; Just remember Polio feels like it strikes again in 45y. It doesn't. Our body only figured out the backup storage is empty. Now, we KNOW measles hammers the immune system. Erasing protections built up over the years, the very short years for child patients. How many years later will we find out the long term effects of measles? Remember, we don't have an answer for Long Covid either. Just like we didn't even know that Polio would develop into the Post Polio Syndrome. Which is where I am. GI doc says, "Yes, you definitely have a Post Polio gut" in response to my query.
I missed the original vaccine by three years. Polio didn't forget me 45y later. Society did. Putting your child and the children around them at risk, is inhumane. To demand a parent's ignorance overrules the welfare of their own children is baffling. Blind allegiance to ignorance.
Long after Polio I have memories of being in line at school, with Mom. Her notebook in hand with my vaccination schedule for each vaccine and a list of dates for each. Thanks, Mom.
So, if you made it here, thanks. Please treat The Disabled Ginger well. She needs it, and she deserves more than this country wants to give these days. Hear her words, and share them if you would.
This is important reading. Of course folks who aren’t in the same boat don’t have any understanding of what we face. They don’t like reading pieces like this because it brings them down. However, for those of us who share the boat with you, we need pieces like this. My situation is somewhat similar and somewhat different than yours. However, I definitely know what it’s like to have to plan around a “new normal.” I am just grateful that I have the type of brain who can manage making those necessary contingency plans. I feel so much for folks who don’t have that kind of brain. Thx for writing this. If there are even just a handful of us who read it…you are still making an impact.
Thank you so much for this comment, I want you to know how much it means to me.
I’m always afraid to publish articles like this because as you said… most people don’t want to read them. They don’t want to think about it. I generally lose a ton of subscribers and that can be hard on the spoons.
It’s also why I think it’s so important. Our suffering matters. Our challenges matter. If more people understood what we face, the world would be a more compassionate place!
Yes - your suffering and challenges do matter and people need to understand what you have to deal with every day. Speaking for myself, I welcome such articles and want to read them 😊
Totally relate. I was looking through Facebook memories and realized I had a flare up in December of a previous year. Just like now. I was trying to figure out why December. Thanks for this article.
You’re so welcome! There’s also the phenomenon of the “October Slide” which is well documented among those with chronic illness. Experiencing flare ups that time of year is common, and for some it hits earlier and some it hits later.
The last three years running I’ve always flared between Christmas and New Years and I’ve never figured out why.
So many reasons. The darkening of days, changing of clocks,,weather changes, holiday stress, mushrooms bloom, birds migrate. For me personally I was deployed to war in September, build until January, then working for the post office with its inevitable overtime season. It’s almost a reflex now.
Wow, thank you for writing this piece. I’m so sorry to hear of your struggles. I rejoiced with you at the victories (new microwave, temporarily moving to a friend’s house when your A/C broke down) then felt the pain of more losses when these makeshift solutions fell apart.
I’m glad you’re feeling well enough to write again.
Please let me know if you have a “Buy Me A Coffee” button.
I’m glad to hear your voice on substack again.
Omg, why not December? I can think of quite a few. But I won't. Yaye.
It took me decades to figure out why September often brought a 'slump/dull/ugh'. Once it dawned on me, it went away. So kewl stuff can happen. Probe gently. ❤️ 💙 💜
Thanks for sharing. I’m so sorry you’re going through this. I can kind of relate to some of what you’re talking about. I had a couple of strokes last year and man it’s tough after nine months of brain fog and weakness to pursue and keep going. Obviously, my symptoms are much different than yours, but Prayers are with you and wishing you the best.
I am so sorry to hear of your strokes. My mother has had one and multiple seizures and it's rough!
This is SO me. I'm so glad you wrote this and will restack.
I am not "visibly disabled" as much as you, even though I have plenty of problems. But I can "pass", which really doesn't help and is counterproductive. Such glares I get when I go out to shop once a week and park in the blue space.
And of course, as an American, my insurance is going up to $1500 a MONTH. Where am I supposed to get that on a fixed income? And my October slide is still here.
Tiny, gentle hugs to all of you.
Many gentle hugs back to you. Financial stress is so real for many of us who are sick & disabled & can’t work. And stress is a trigger. I’m in a similar situation with insurance & all my co-pays & deductibles went way up!! Sneaky. Much love ❤️
I just had an MCAS flare, too -- my first once since I started a GLP-1. It wasn't severe, but a good reminder I still need to mind what I eat and pay attention. It is a shitty disorder and I'm sorry you are struggling. I always feel like when I flare I am back at square one. Big hugs.
How long have you been on the GLP-1 if you don’t mind me asking? I’m very intrigued by their potential. I’m maxed out on stabilizers and H1s and H2s and still wasting away because my MCAS hits my gut so hard.
I totally thought i responded to this (adhd December brain sorry). I’ve been on it for a little over 5 months. I would talk to your doctor, but if you can’t keep weight on it may not be right. I’m also on Xolair and have been for almost six years, but I’ve spaced out my dosage to every two months.
Feel for ya ♡. Sharing the info is important to hear, so thank you for being willing to do so. It's not easy when there's hurting going on. Thanks for your posting.♡
At least now you have a clue how it plays out. Suks yes, but you made it out before. Win. Feel for yah.♡♡♡
If I may share some helpful advice from someone who has faced a number of challenges, and continues to do so, "be kind to yourself"!
As always, my thoughts and prayers are with you, Bob
Wow your article woke me Up!! I had no idea you were out there! I know nothing of your disease? Please elaborate, I am very verbal and I can pass along your story. The more people know the More they can help.
Omg. I remember when your microwave failed. All those appliances going at once is out of the ballpark. No wonder you had a bad flare up. I am glad you can write again. Autoimmune diseases are a demanding teacher. 💔❤️
Sending lots of gentle hugs. I'm hoping that you writing this means you are starting to pull out of this flare. Whenever I have enough good days to start questioning if it's my new normal, I never do, because in the past every time I've started to hope I've improved I come crashing down. I have been lucky that most of my crashes only last a few months at most (now marvelling at my use of 'lucky' to describe being in extreme pain and exhaustion, unable to enjoy life), so I don't always spiral into the 'what ifs', but I understand how easy it is to do. I also know how hard it is to completely stop worrying to actually rest properly, so well done for doing so.
Thank you for such a vulnerable and articulate piece. My heart ached with sad recognition of so much of what you described. I'm truly sorry that you are going through this.
I've lived with moderate to severe ME/CFS, POTS, and FM for 9 years. Last Summer, I had a glorious 4-month partial remission of the severity of my symptoms that was cut short by multiple unexpected hospitalizations and heart procedures in September/ October. I'm now in a flare that has me mostly in bed and trying not to panic that I'm back to this very low baseline. I'm beyond fortunate to have an amazing husband/caregiver and relative financial security, but I'm still struggling with this decline and the radical rest and acceptance that I know it requires.
Thank you for using so many spoons for your writing. It means more than I can say to see myself in your words and know that I'm not alone. I wish you speedy passage through your very difficult season.
I’m sorry that you have had such a difficult few months. Your writing about it is very inspiring to me, and I don’t have anything close to the health issues you experience. I appreciate your perspective on when to let go and allow rest to help you achieve a more positive baseline. I wish you continued strength and healing. You and your voice matter.
I relate to this all too well--particularly the domino effect of things outside your body going wrong as you're trying to navigate simply existing. Here's to those better days ahead.
I appreciate how open and honest you are about these things. Most people, especially those with a decent platform, put forth an image of having everything together and knowing exactly what they are doing. Especially lately, I imagine there are far more people struggling out there than most of us would think.
Eloquent You're a beautiful writer. I empathize 100%.
The cascading domino effect here cuts so deep, especially how one broken appliance triggers a whole systemic collapse when accessibility tools fail. What really hits is the insight about worrying more on bad days than celebrating good ones. We rarely ask "will this be my new normal?" when things go well. That asymmetry in thinking deserves more attension than it gets!
It has been over a week now, and I am ready to share my view on flares and their ilk
I contracted Polio in Summer of '52. One of the paralytic cases. Swam in a lake, where rich people dumped raw sewage into the lake instead of being civilized. That night, I could not get up the stairs to bed. My father complained the entire while but he carried be up and put me to bed.
The next day, a Sunday, I remember being in the doctor's office. Dad was in a suit, Mom was wearing her Sunday best, grey suit with a grey hat of a shape I cannot recall. Pillbox? The doctor explains that, yes, I had Polio. They had the ambulance come to the back door of the clinic, to not panic my parents. To take me directly to the hospital.
Then hospital memory, being in quarantine for two weeks with not a single explanation to my little self. Took a blood draw first thing, had to strap me down as they put the needle in by my elbow. Doctor says, "Don't worry, he's only four, he won't remember any of this" I really wanted to meet that doctor in my younger days. Whenever I got stressed my left arm would draw back and I had to hold it up with my right. It was decades before I found out why I did that. I finally stopped.
Then out of quarantine, large room with many cribs for the polio patients. Cribs. Not beds. Finally home, with Mom taking on PT duties. March of Dimes covered the hospital. Which I hadn't known about either.
So, why now? What have I got to share today? Well, Polio attacks the central nervous system, but it wasn't exactly how they thought back then. The virus killed 95% of my motor neurons. All of them. Look into motor neurons - they are everywhere. The 5% are all we have and we will never get more.
When does it become a problem? Well, when you're first hospitalized, then ~45y later. The body no longer has any backups. So. Systems fail. A little at a time over the years. But by 45 you are pretty sure things are not going well, and the docs will tell you it isn't going to get better. Ever.
It hasn't gotten better. I do less. That is how I survive. Walking, physical exercise of any form can cause a flare like reaction. Meaning I will be down for at least a day. More if I refused to pay attention. Which recalls my PT back then. It was riddled with "push through the pain" and "pain isn't going to stop you!" Still doesn't. Even when it should. I have to be present and aware that I am not taking care of myself in order to stop doing whatever I was up to. Doesn't always work.
While my flares are mild compare to many, I will never get better. Each year will be worse. Until there is nothing of me left.
For the anti-vax crowd, the clowns, the grifters, the misinformed; Just remember Polio feels like it strikes again in 45y. It doesn't. Our body only figured out the backup storage is empty. Now, we KNOW measles hammers the immune system. Erasing protections built up over the years, the very short years for child patients. How many years later will we find out the long term effects of measles? Remember, we don't have an answer for Long Covid either. Just like we didn't even know that Polio would develop into the Post Polio Syndrome. Which is where I am. GI doc says, "Yes, you definitely have a Post Polio gut" in response to my query.
I missed the original vaccine by three years. Polio didn't forget me 45y later. Society did. Putting your child and the children around them at risk, is inhumane. To demand a parent's ignorance overrules the welfare of their own children is baffling. Blind allegiance to ignorance.
Long after Polio I have memories of being in line at school, with Mom. Her notebook in hand with my vaccination schedule for each vaccine and a list of dates for each. Thanks, Mom.
So, if you made it here, thanks. Please treat The Disabled Ginger well. She needs it, and she deserves more than this country wants to give these days. Hear her words, and share them if you would.