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!
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. ❤️ 💙 💜
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.
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.
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.
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.
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. 💔❤️
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.
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.
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.
Thanks for explaining the difficulties so clearly. Really appreciate that you are able to be patient through the troubles and get back into writing as you are able.
hey thank you for this and i hope you’re either chosen or randomly picked for significant recovery. i’m going through a by now one year and a half setback which is supposed to end any moment now but i’m still waiting, so i know the pain. surrender is both so freeing and bitter. who knows what will happen. but we do what we do and at least we exist, what can mean more, right (this Bright Eyes btw, i’m not so slay lol). writing is also what keeps me going, largely, so here’s hoping we can both lean into that loads. wishing you everything good!
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.
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!
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. ❤️ 💙 💜
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.
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!
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.
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.
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. 💔❤️
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.
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.
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.
Thanks for explaining the difficulties so clearly. Really appreciate that you are able to be patient through the troubles and get back into writing as you are able.
hey thank you for this and i hope you’re either chosen or randomly picked for significant recovery. i’m going through a by now one year and a half setback which is supposed to end any moment now but i’m still waiting, so i know the pain. surrender is both so freeing and bitter. who knows what will happen. but we do what we do and at least we exist, what can mean more, right (this Bright Eyes btw, i’m not so slay lol). writing is also what keeps me going, largely, so here’s hoping we can both lean into that loads. wishing you everything good!
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%.