purrsian
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I've had that thought many, many times lol
Although the 'I am better' bit is my better, not actually better. Wouldn't that be nice!
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What's your crash time frame?
- Thread starter alice111
- Start date
Although the 'I am better' bit is my better, not actually better. Wouldn't that be nice!
Dechi
Senior Member
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Yeah, well, being better is just back to my baseline, never more unfortunately. I keep reminding myself of all the research going on in the world right noe and that gives me hope.
TigerLilea
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- Vancouver, British Columbia
I usually notice the next day.
Mine arc with the worst shortly after the beginning and a long slope to recover. ie. Crash hits, worsens over a few hours, feel utter debilitating mental and physical exhaustion, then it takes 4-7 days to slowly feel 'normal' again.
Jennifer J
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Hi, @alice111.
I do have an arc. Day 2 is hell for me, it takes about 5 - 7 - 9 for me to slowly get back to base line. Of course there's all kinds of variables on how and when I get back to base (could be weeks to months), and if I even get back to it. (Hope this makes sense.) Day 2 is always rougher, day 3 can be too. I can also crash immediately afterwards. Of course, there's other scenarios how this plays out, too.
TrixieStix
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I often "crash" immediately after exertion (physical, cognitive, or emotional) but now I am wondering if perhaps that some of these "crashes" are a consequence of POTS? I have just started on a very small dose of beta blocker to see if they help my POTS symptoms. Curious if treating my POTS symptoms will reduce or change my "crashes".
Mine can be instant. I get the delayed reaction, too, just to cover all the inconvenient and frustrating bases :-(
I can think I'm up to getting out of bed and doing something simple like getting dressed or cleaning my teeth, and start to shake all over, feel sick, weak, lose my balance, feel ill, break out into a wild sweat and be forced back to bed even while I'm doing that simple thing. If I don't stop at that point, I will get dizzy and throw up spectacularly. The girl from The Omen ain't got nothing on me.
My crashes can take months to resolve. Sometimes they take less recovery time, and need bigger stressors. It depends what my biochemistry is doing. They always involve migraines, which can land on me from nowhere, or build up slowly throughout the day, or can wake me at 3 or 4am in full flood when I've gone to bed feeling OK.
I've lost count of the times when I've been so determined to get up and do (I HATE being stuck in bed and not being active, it's so frustrating!) that I've taken extra steroids, painkillers, supplements, etc, and dragged myself doggedly to Tesco's to do some shopping. (My partner is crap at Yellow Label bargain-hunting!)
I then feel like I've walked into a brick wall with my trolley, and just crash. Everything happens as above, and I literally can't put one foot safely in front of the other from that point. I'm just too weak, wobbly and nauseous. My legs stop working.
I've been rescued by Tesco staff umpteen times. Bf comes and gets me if sitting down doesn't give me the basic wherewithal to be helped to the car and drive myself very slowly home.
An argument, or getting upset over something and crying, has the same impact. Immediate, with prolonged effects. I threw up for 3 days straight after a massive domestic over my then "partner" refusing to have children with me and admitting that he'd lied about wanting them from day one of our 5 year relationship. I was ill for weeks after.
Driving 3 miles there and back to my GP's can put me to bed for the rest of the day.
Driving 12 miles there and back to a hospital appointment can put me to bed for 3 days.
Going to another hospital appointment 45 miles away can put me to bed for a week.
At the moment, due to screwing up my methylation protocol, even crawling to the loo produces a low-level crash. Everything is magnified. I've been due to get my repeat scripts into my GP pharmacy since early last week, and haven't been able to. I HAVE to do it today, or I'll run out of the basics that keep me out of hospital.
More steroids, jeans over pj's, there and back, will only make it as far as the sofa when I get home again.
It drives me mad when people say, "You just have to get on with it. I haven't got time to lay around in bed/ I'm too houseproud to give in to it / I don't have a choice but to carry on working," and similar comments that imply there is a choice in whether to Do or Rest. I certainly don't seem to have that choice to perform any regular, sustained activity, especially at the moment. I can't tell you how much I wish I did, every single day. I know that hauling myself to town is going to bite me hard today, and that's less than 30 minutes total time, with about 25 minutes spent sitting down, either in my car or on the seat on my embarrasing wheely-trolley thing.
C'est la vie. Not meaning to have a pity-party here, I know there are loads of people much worse off than me, just really frustrated atm.
I can think I'm up to getting out of bed and doing something simple like getting dressed or cleaning my teeth, and start to shake all over, feel sick, weak, lose my balance, feel ill, break out into a wild sweat and be forced back to bed even while I'm doing that simple thing. If I don't stop at that point, I will get dizzy and throw up spectacularly. The girl from The Omen ain't got nothing on me.
My crashes can take months to resolve. Sometimes they take less recovery time, and need bigger stressors. It depends what my biochemistry is doing. They always involve migraines, which can land on me from nowhere, or build up slowly throughout the day, or can wake me at 3 or 4am in full flood when I've gone to bed feeling OK.
I've lost count of the times when I've been so determined to get up and do (I HATE being stuck in bed and not being active, it's so frustrating!) that I've taken extra steroids, painkillers, supplements, etc, and dragged myself doggedly to Tesco's to do some shopping. (My partner is crap at Yellow Label bargain-hunting!)
I then feel like I've walked into a brick wall with my trolley, and just crash. Everything happens as above, and I literally can't put one foot safely in front of the other from that point. I'm just too weak, wobbly and nauseous. My legs stop working.
I've been rescued by Tesco staff umpteen times. Bf comes and gets me if sitting down doesn't give me the basic wherewithal to be helped to the car and drive myself very slowly home.
An argument, or getting upset over something and crying, has the same impact. Immediate, with prolonged effects. I threw up for 3 days straight after a massive domestic over my then "partner" refusing to have children with me and admitting that he'd lied about wanting them from day one of our 5 year relationship. I was ill for weeks after.
Driving 3 miles there and back to my GP's can put me to bed for the rest of the day.
Driving 12 miles there and back to a hospital appointment can put me to bed for 3 days.
Going to another hospital appointment 45 miles away can put me to bed for a week.
At the moment, due to screwing up my methylation protocol, even crawling to the loo produces a low-level crash. Everything is magnified. I've been due to get my repeat scripts into my GP pharmacy since early last week, and haven't been able to. I HAVE to do it today, or I'll run out of the basics that keep me out of hospital.
More steroids, jeans over pj's, there and back, will only make it as far as the sofa when I get home again.
It drives me mad when people say, "You just have to get on with it. I haven't got time to lay around in bed/ I'm too houseproud to give in to it / I don't have a choice but to carry on working," and similar comments that imply there is a choice in whether to Do or Rest. I certainly don't seem to have that choice to perform any regular, sustained activity, especially at the moment. I can't tell you how much I wish I did, every single day. I know that hauling myself to town is going to bite me hard today, and that's less than 30 minutes total time, with about 25 minutes spent sitting down, either in my car or on the seat on my embarrasing wheely-trolley thing.
C'est la vie. Not meaning to have a pity-party here, I know there are loads of people much worse off than me, just really frustrated atm.
Invisible Woman
Senior Member
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Oh yes! We've all had those comments. These days I mentally translate these type of sentences to: " Aren't I so lucky!! I've never been sick & I have neither the understanding nor the empathy to have the first clue about how that might feel. So that means it MUST be a sign of weakness on your part!"
This of course instantly disqualifies their opinion as they are so clueless, as far as I'm concerned. If I can be bothered I might just tell 'em "You are so lucky never to have been really ill!"
@Invisible Woman
Hi
Yes, way too common amongst Normals.
Got a really good friend I've known for years who takes this a stage further.
She said recently that she cannot understand how or why "some people" (meaning me and another mutual friend who is evidently having problems) "are so in touch with their own bodies" - Oh good, I thought, she's going to say something positive....
"- that they can monitor every tiny change and tell you that this started hurting at 10am, at 10.30 I took a painkiller, by 12 it was killing me and I felt sick, so the painkillers made me feel sick, then after I'd had a tomato salad, it was worse, more swollen and inflamed, so the tomatos made it worse, which means tomatos are inflammatory - for God's sake!! Why can't you just get ON with it? I've had a knackered knee for two years. Doesn't stop ME getting on with things!"
Now, I love my friend, so I just smiled and nodded.
I can forgive her for not understanding, because she is, in the very literal sense of the word, ignorant of the challenges people like us face. She doesn't get that a lot of us are forced to turn detective to try and get well, because being well is what we want more than anything in the world. Why would she? She doesn't wake up exhausted every morning, to find that yet another body part has broken/ changed/ dropped off overnight.
What makes my blood boil is hearing the "Get on with it," speech, like it's a choice, like we're a bunch of lazy mo-fo's, from other people who say they have the same condition(s).
All I can assume is that a) their martyrdom knows no bounds, and b) there are degrees of severity, and theirs isn't that severe yet.
I carried on working, mostly through sheer determination aided and abetted by diet coke, glucose sweets, coffee, bucket loads of Vit C, and sleeping every spare second, as a regular employee until my bad days became so frequent and so unpredictable that I let my boss down too many times to be comfortable with being that person anymore.
So I switched careers and became self-employed. That way, I could avoid a lot of letting-people-down guilt. I could take days off and spend them crashed out in bed, sleeping and waiting for some energy to gather in me again, work for another few days, crash for another few days....rinse, repeat. That worked for another 5 -10 years or so.
Eventually, after breast cancer treatments in 2007/8/9, even making my own hours was too much, and here I am now, perpetually on the brink of the next crash if I have the audacity to make Normal and get out of bed.
So I really resent hearing other people, at an earlier stage than I am now, tell all and sundry that it's *just* a case of pushing through, thus reinforcing some Normals' and the general media belief that anyone with CFS/ME is a lazy b who milks the sympathy vote, reclines like Lady Muck on a lark, positively luxuriates in bed all day, and actively enjoys not being able to work.
I can't think of anyone I know with this disabling and often misunderstood condition who fits that warped perception. I can think of few things more humiliating, degrading, and disempowering.
So there!
Hi
Yes, way too common amongst Normals.
Got a really good friend I've known for years who takes this a stage further.
She said recently that she cannot understand how or why "some people" (meaning me and another mutual friend who is evidently having problems) "are so in touch with their own bodies" - Oh good, I thought, she's going to say something positive....
"- that they can monitor every tiny change and tell you that this started hurting at 10am, at 10.30 I took a painkiller, by 12 it was killing me and I felt sick, so the painkillers made me feel sick, then after I'd had a tomato salad, it was worse, more swollen and inflamed, so the tomatos made it worse, which means tomatos are inflammatory - for God's sake!! Why can't you just get ON with it? I've had a knackered knee for two years. Doesn't stop ME getting on with things!"
Now, I love my friend, so I just smiled and nodded.
I can forgive her for not understanding, because she is, in the very literal sense of the word, ignorant of the challenges people like us face. She doesn't get that a lot of us are forced to turn detective to try and get well, because being well is what we want more than anything in the world. Why would she? She doesn't wake up exhausted every morning, to find that yet another body part has broken/ changed/ dropped off overnight.
What makes my blood boil is hearing the "Get on with it," speech, like it's a choice, like we're a bunch of lazy mo-fo's, from other people who say they have the same condition(s).
All I can assume is that a) their martyrdom knows no bounds, and b) there are degrees of severity, and theirs isn't that severe yet.
I carried on working, mostly through sheer determination aided and abetted by diet coke, glucose sweets, coffee, bucket loads of Vit C, and sleeping every spare second, as a regular employee until my bad days became so frequent and so unpredictable that I let my boss down too many times to be comfortable with being that person anymore.
So I switched careers and became self-employed. That way, I could avoid a lot of letting-people-down guilt. I could take days off and spend them crashed out in bed, sleeping and waiting for some energy to gather in me again, work for another few days, crash for another few days....rinse, repeat. That worked for another 5 -10 years or so.
Eventually, after breast cancer treatments in 2007/8/9, even making my own hours was too much, and here I am now, perpetually on the brink of the next crash if I have the audacity to make Normal and get out of bed.
So I really resent hearing other people, at an earlier stage than I am now, tell all and sundry that it's *just* a case of pushing through, thus reinforcing some Normals' and the general media belief that anyone with CFS/ME is a lazy b who milks the sympathy vote, reclines like Lady Muck on a lark, positively luxuriates in bed all day, and actively enjoys not being able to work.
I can't think of anyone I know with this disabling and often misunderstood condition who fits that warped perception. I can think of few things more humiliating, degrading, and disempowering.
So there!
Last edited:
Dechi
Senior Member
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@TrixieStix I don't have POTs and I crash, but I hope your medication has an impact. I take Nimotop (nimodipine), a calcium channel inhibitor, and it helps me crash less. I still have to be careful and I will crash if I overdo it, but any improvement is welcome, isn't it ? ;-)
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God that must be intensely frustrating not to mention really difficult to manage!
Yeah, i wish i had known what i had years earlier, took over a dozen doctors and over a decade to figure it out
If i had known what to expect i could have done things differently, but we can't change the past
me/cfs 27931
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I think many of us feel this way. My life would certainly have been much different if I had been diagnosed early and learned to manage my illness.Yeah, i wish i had known what i had years earlier, took over a dozen doctors and over a decade to figure it out
If i had known what to expect i could have done things differently, but we can't change the past
Instead, I was continually encouraged by doctors to push myself, and prescribed stimulants over many years to "help" my functioning. Which, of course, just intensified the push/crash cycle.
Best not to dwell on the 4 decades lost, and try to appreciate what is left in life.
@TrixieStix
I believe you can crash with numerous different chronic conditions.
Hypothyroids talk of crashing.
Fibros talk of crashing.
ME/CFSers talk of crashing.
Hypoadrenals talk of crashing.
I'm sure other conditions with energy and function limitations crash too.
Fibro's also talk of flares - is that common parlance in the CFS/ME comunity, too? - To my mind, crashing then experiencing even more severe symptoms on top of or after a crash could be easily be classified as a flare-up.
It is definitely frustrating, but sooooo much better now that I Know this!!! I used to think this illness was so chaotic and sporadic and I had no control, but once I figured out that (for me at least) half of it was crashing i suddenly had much more control. It does take a crazy amount of patience though hah
jpcv
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- SE coast, Brazil
PEM onset: 36-48 hrs. Funny fact, I feel very good in the first 24 hrs after exertion.
Day zero :exertion
Day one :
Day two
Day three and for
Day five : a little better
Crashes can last up to 7days
Day zero :exertion
Day one :
Day two
Day three and for
Day five : a little better
Crashes can last up to 7days
I used to be similar to this as wellPEM onset: 36-48 hrs. Funny fact, I feel very good in the first 24 hrs after exertion.
Day zero :exertion
Day one :
Day two
Day three and for
Day five : a little better
Crashes can last up to 7days
me/cfs 27931
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Before I was correctly diagnosed and learned how to properly rest, my recovery time was significantly longer. Weeks, months, up to 4 years. Not a couple of days like now.
I had years where I never "recovered", and was prescribed stimulants to clear my brain fog while pushing my way through the PEM. And a mood stabilizer to manage the swings induced by the stimulants prescribed to push through the PEM.
I had years where I never "recovered", and was prescribed stimulants to clear my brain fog while pushing my way through the PEM. And a mood stabilizer to manage the swings induced by the stimulants prescribed to push through the PEM.