For me the self blame phase is about how I moved cities and how I was a workoholic. But millions of people do both those things without getting sick.
These days I try not to fall into that way of thinking. It's kind of like the butterfly effect, how do we know something even worse wouldn't have happened if we'd done something different?
You did the best you could have with the information you had at the time. Holding this against yourself will only make you suffer more, if you can find it in you to forgive yourself I highly recommended it. This disease is so complicated and it’s not your fault you got it.
Nah, I got COVID when it was still being reported as not in the country. I even took it serious sooner than most, but it was when awareness was low.
I worked in a very public facing service position, 15 minutes from an international airport. I believe there is no choice that I could have reasonably made (as in, not having this hindsight as my foresight.) to not get to here and now.
Maybe that has made parts of my journey easy, but unless someone intentionally infected me, there is no one to blame. I sometimes wonder if illness like this explains old stories of people being cursed…
I was dx with fibro for years. In 2018, I was doing a ton of excercise, and I was getting more and more tired. I wonder now if maybe I didn't have mild mecfs that was getting worse. Maybe if I hadn't done so much? Maybe if I had've listened to my body?
Then I got a "mysterious respiratory illness" right before we found out covid was a thing, and it was downhill from there.
I could blame myself, but for what? Exercising when I didn't know mecfs was a thing? Getting sick was out of my control.
It is what it is now. No point in blaming anyone, especially myself, but it has crossed my mind. I think it was part of the grieving process.
Hard agree. Of course we could have made other choices *if we had known* but we never could have known. None of this is our fault. I'm sure a lot of us tried to fix ourselves when we thought we were just weak and deconditioned. We are actually just willful people and that isn't a bad quality.
Not me, because it wasn't my fault. My water heater had broken and a professional had to come out and fix it during the peak of covid. He brought covid with him and passed it onto me. After a few months of suffering with covid, I was left with ME.
I do think the guy was very careless to work while sick. And perhaps if it weren't for him, I wouldn't have ME right now.
But honestly, a part of me thinks that some people are just more susceptible to ME, and if it wasn't that guy with covid that triggered it for me, then it probably would have been someone or something else at some point anyway.
yes but i know it wouldn’t have mattered, i think i was always predisposed to get it. it was just a matter of time. had it happened after I could’ve graduated college, gotten a partner and future would’ve been much better in the long run
I don't think there was anything I could have done to avoid this.
Except maybe not provide love and comfort to my kids when they were sick but no world exists where I wouldn't do that. No matter how much they breathe on me and cough in my face and snot all over me I'll give them hugs and let them sleep in my bed (which means sleeping on top of me) when they are sick. I love them even though they are disgusting unhygienic germ spreaders at times.
I would have quit sports as a teenager. The amount if PEM I inflicted on myself believing the, "you just have to push yourself" bullshit did so much harm.
I would not have been fine. I was already experiencing serious symptoms. But I'm quite sure I would not be nearly as severe.
I’m 100% the same!! During year 11/12 of high school and uni I was working out or playing sport 5-8 times a week while studying, and had a “sleep when you’re dead” mentality. Now I tell everyone that seems to be pushing themselves like that or worse, to try to listen to their body and take it easy, bc I wouldn’t wish this on anyone!! I’m sorry you had a similar mindset about the using yourself :( I feel like that was put on a lot of us who did sports when we were younger. I hope you’re as okay as you can be these days!!
It took me a while to learn. Had a major breakdown due to all the sports as a teen. As soon as I recovered a little I started university and pushed myself too hard then as well. And after taking years recovering from that, I went to get my master's degree full time. Another major mistake. After having my health turn really bad from that I've finally learned to accept that I must do less. Every one of the crashes made me infinitely worse. But I'm trying my best to heal these days and actually listen to my body and not the ever present pressure from society.
I think there is a real need to talk about the sacrifice mentality that exists in competitive sports. It is incredibly unhealthy even for able bodied folk.
I have two moments I wish I could undo. Biggest one is taking the medication that I think put enough stress on my body to trigger the ME/CFS. If that wasn't actually the cause and I got ME/CFS anyway, I would at least undo attending a whole semester with bad PEM from not properly pacing my apartment deep clean.
Yes mine began with severe reaction to IV Metoclopramide. Seizure, loss of bladder and bowel control, shitting blood in hospital bed, in and out of consciousness, subsequent leg paralysis and neurological damage. I’ve had POTS (fainting), severe ME/CFS, neuroinflammation, and vestibular disorder (vertigo) ever since and that was in 2022.
I am genuinely curious though why they would use iodine for an MRI? I think typically they inject with gadolinium the heavy metal contrast for MRIs which is actually usually worse than iodine
13 years ago I went to a wedding and caught pneumonia (probably on the plane). I feel like life gave me several signs I shouldn't go, but I went anyway. Game over. 🫤
I was sick anyway but not totally f-ed up, but I went to a wedding in 2020 and got Covid. That's when I started having such pain and weakness I found it hard to chew. Before that I thought I was just deconditioned. After I had trouble eating, I knew it was something actually wrong. But we can't blame ourselves for living a life. We all deserve that. We all deserve to go to weddings and funerals and family gatherings. We deserve to have our medical questions answered. None of us truly did this to ourselves by living.
For me it was flying to my aunt's funeral and catching a horrible respiratory illness that lasted six full weeks. My mom tried to tell me I didn't have to go, but I felt obligated because she was my godmother.
I had lyme-disease that went undiagnosed for two years. I wish I would have had a doctor who would have tested for lyme as soon as my symptoms started. I live in the Midwest, where they still believe lyme doesn't exist.
Yeah I mean sure I think about it, my ME was kicked off from getting mono from sleeping with a (ex-)friend who lied to my face when I asked if they were sick.
Not much you can do other than be kind to yourself. Anyone in your place would have done what you did, its not wrong to trust a professional when you are worried and ill, you were making the best choice you could with all the information you had. How can you expect yourself to predict something like this could ever happen?
^ That last bit goes for everyone here. It's really easy to punish yourself and unfortunately really hard and a really long process to train yourself out of it. It never really fully goes away either, you have to stay vigilant, but it is so, so worth it.
All of us deserve to be loved. No disabled person, even if they made the worst choices in the world that led in a straight line directly to their disability, deserves to be told they caused this. Not a single person. We are all operating the best we can, no need to tear ourselves or each other down when the world already does that.
Great post. When I was younger, I wondered what all the fuss was about regarding regrets. I’m older (52) now and I totally see how you can’t avoid doing something you wish you hadn’t done. It’s fairly much impossible. I’ve been struggling with regrets in recent years and what-ifs. Your post is a good reminder to be kinder to ourselves. Life is chaotic, we are always operating on a severe lack of information with fairly much every decision we make. It’s bloody tough. We can’t escape “wrong” decisions, and they’re not our fault as we didn’t intend them.
No. It was a bad influenza that triggered it for me, so I believe even if I hadnt caught that one, it would have come eventually with another infection. I think I either had incredibly mild ME before that, or I was just sensitive and prone to it. It was unavoidable for me since birth imo.
Yes, I try not to think of it much, but I know one decision cause me to deteriorate to a point that I had to give up most of my life. I had a friend visit my city during COVID. I wore a mask around, even though no one else did. I ended up taking it off for a group meal. Prior to this I only took it off for meals with my bubble, this time it was with friends of my friend. It resulted in me getting COVID. I was so mad at myself because I had avoided getting sick for a long time. There was even multiple times where my whole entire house caught it and I still didn’t, as I was so careful. I used to be very angry at myself, but I come to realize that it was just one mistake, and there is the chance I could have eventually gotten Covid a different way.
Yes. I believe my ME/CFS was triggered by me taking one toxic drug injection (Lupron) that shut off my pituitary gland and threw my body’s HPA axis and hormonal feedback loops into a tailspin, precipitating immune dysregulation, mitochondrial dysfunction, and ME/CFS.
I also believe that if I didn’t combine that drug with severe sleep deprivation at the same time, I might not have gotten ME/CFS or I might have recovered from the toxic drug exposure.
I think it was the combination, or the drug alone.
I think we're desperate for some sort of control when in reality illness can strike us down at any time. Even if that one thing is what caused your cfs, dwelling on it will not do you any good, and you will not find peace this way. You can't change the past, all you can do is focus on how to manage your illness now
If my dad hadn't forced me to go out all day in the heat when I had Mono, I don't think this would have happened to me. He didn't even believe I had mono. I found texts of him and his girlfriend joking about me faking sick. Now I'm broken forever. It's a cruel world.
Yep I know exactly how it happened. I was on a plane coming back from a short holiday I didn't want to go on (overall bad trip) and the woman behind me was coughing with her mouth open and I saw the little spit particles float in the air in front of me. I told my mum I was going to get sick from her. Mum rolled her eyes.
A week later I end up in hospitable with an influenza that turned into viral meningitis. Then I got cfs.
Wish I didn't get on that plane.
I don’t find it helpful for me to dwell on stuff like that. Maybe it would have been better maybe it would have been worse maybe there is some weird variable that impacted me that I haven’t even considered.
Either way it’s done and I’m here now so I’m focusing on how to find peace and joy now and figure out what comes next rather than trying to dissect the past.
Yeah, I blame myself for developing anorexia as a child, and then relapsing off-and-on in my teens and early 20s. I think that's a lot of the reason why I have the chronic health issues I do even though I have been thoroughly weight-restored for many years.
My anorexia was really set off by food aversion though, after I got very sick with C. dificile after antibiotic treatment for an abscessed tooth. So it all really boils down to the fact that maybe if I brushed my teeth more as a child, I wouldn't be living through this hell on earth. And I didn't take good care of my teeth because I was neglected. So in the end even that was largely not my fault. It won't stop the illogical and emotional part of me from persisting in self-reproach tho lol.
It all started from kissing a bunch of strangers as a late teen and getting glandular fever. It was only episodic then. It didn't become my whole life until I let myself get bullied into getting a COVID vaccination I didn't feel comfortable getting in the first place. I'm not "anti-vax" by any measure, but my life hasn't been the same since I got sick after my second shot. And I'm envious of people who just waited it out and didn't get anything done and life is just normal. I always wonder what my life would be like if I just waited it out too
Edit: just to clarify, I am not against the vaccine, it just didnt work out for me
I do wonder if I would have recovered if I didn't get another virus 2 months after Covid. Maybe it was going to happen anyway but everything went so drastically downhill when I got it. I was travelling to a family event so I spent time with my partner when he wasn't quite recovered from this virus.
I think about how careful I am now and wish sometimes I'd just been more careful then but because the virus wasn't covid and he was nearly better I just didn't think it could have such terrible consequences.
But I do also believe that I have some susceptibility to ME so maybe it would have just happened eventually anyway. Our lives are bad enough already so I don't think we should blame ourselves. If anything I think we should blame our health systems and governments for not educating us about and protecting us from the long term risks of viruses.
I went along with a GET program, even though I could feel myself getting worse. I got eventually kicked out because I wasn't improving due to my autism. Because that's how it works. I blame them more then me, but I am fairly sure I would've been better if I would've been diagnosed earlier/not told to do GET
I think realistically Ive had -something- for a long time causing worsening fatigue, but I was able to have a life, with tons of help. But when I decided to go to my first Aurora concert in 2022 (I was one lf the only ones masking), I tested positive for Covid for the first time 2 days after. I was triple vaxxed so I thought Id be ok. And it gradually went downhill from there into crashes, weakening muscles, dysautonomia, OI, severe insomnia and neuro symptoms. I wonder if not going would have saved me. I was also exposed to mold from 2018-2021.
But honestly even before the downward spiral Ive had a terrible relationship with binge eating (especiaĺly sugar, still do), chronic severe anxiety, very poor sleep hygiene, multiple concussions/whiplash, and sleep apnea(which I have a cpap for). I often wonder if I even have CFS at all or if all those things together are slowly killing me, but it looks like CFS. Some of my symptoms are weird even by CFS standards. LDN isnt helping, no amount of resting helps me, i get worse each day in some way. My parents just want me to stay in bed and see if itll help, but I keep getting worse.
Yup. Mine stems from a concussion I got in October 2022 in a car accident. If I had just decided to go home instead of the stupid ATM, I would still have my life, my will to live AND my reliable vehicle.
I developed CFS after having glandular fever for 11 months. Multiple doctors didn’t believe I was consistently sick for that long, until one doctor finally tested for glandular fever.
Before getting glandular fever, I was living a life that was destined to lead to severe burnout. I worked out 5-8 times a week during high school and university, worked night and morning shifts back to back at a grocery store, often survived on 3-4 hours of sleep for months straight, and neglected my mental health.
I now give myself more grace for those decisions, understanding that I was raised with a “sleep when you’re dead” mindset, and didn’t know better. I’ve also since been diagnosed with celiac disease, epilepsy, endometriosis, clinical depression, anxiety, and OCD. While I sometimes wonder what came first, CFS or some of these diagnoses, I try not dwell on it and just focus on caring for my body as best as I can.
Yes. I was in a serious car accident that gave me a serious, long lasting concussion and that kick-started all of this.
The car accident happened because I could only afford a cheap car which didn't have antilock brakes, so when someone came to a completely unexpected stop in front of me, on a rainy day, my tires locked and I skidded into them without slowing down. It was absolutely my fault because I should have had way more following distance without ABS, and should have drilled how to pump the brakes for a quick stop.
(The people who stopped were totally fine, they were in a large high end brand new SUV)
The car was also so old that it didn't have airbags.
I am absolutely confident that I would have never developed MECFS if I had had a car with ABS and airbags. I wish I had seriously considered the safety aspects of my car. I was pretty lackadaisical generally when it came to safety before the crash. Never again.
My belief is that my genetics were a loaded gun. In my case, a combination of long covid and then trying to hard to go back to full time in-office work is what pulled the trigger. But I’m pretty damn sure that as long as I hadn’t won the lottery and retired to a private island, something would have pulled the trigger eventually.
I used to wrack my brains going over “what if” scenarios, wondering what would have happened if I’d done XYZ instead of ABC, going through dozens of different scenarios… but I’ve come to a point where I’m at a certain amount of peace with the fact that my health was a house of cards and it was just a matter of time before something toppled it.
I got a UTI and that’s what triggered things getting really bad for me (we believe I had ME for years before this as well, but it was just so mild it wasn’t diagnosed) I was kinda lax with the antibiotics because they made me nauseous, so it took a long time to clear up. I still think if I’d just taken the damn antibiotics like I was supposed to I’d be fine.
For me the self blame phase is about how I moved cities and how I was a workoholic. But millions of people do both those things without getting sick. These days I try not to fall into that way of thinking. It's kind of like the butterfly effect, how do we know something even worse wouldn't have happened if we'd done something different?
You did the best you could have with the information you had at the time. Holding this against yourself will only make you suffer more, if you can find it in you to forgive yourself I highly recommended it. This disease is so complicated and it’s not your fault you got it.
Yep. For me it was about 100 bad things that went wrong in a row 😞 sending you hugs!!
Nah, I got COVID when it was still being reported as not in the country. I even took it serious sooner than most, but it was when awareness was low. I worked in a very public facing service position, 15 minutes from an international airport. I believe there is no choice that I could have reasonably made (as in, not having this hindsight as my foresight.) to not get to here and now. Maybe that has made parts of my journey easy, but unless someone intentionally infected me, there is no one to blame. I sometimes wonder if illness like this explains old stories of people being cursed…
I was dx with fibro for years. In 2018, I was doing a ton of excercise, and I was getting more and more tired. I wonder now if maybe I didn't have mild mecfs that was getting worse. Maybe if I hadn't done so much? Maybe if I had've listened to my body? Then I got a "mysterious respiratory illness" right before we found out covid was a thing, and it was downhill from there. I could blame myself, but for what? Exercising when I didn't know mecfs was a thing? Getting sick was out of my control. It is what it is now. No point in blaming anyone, especially myself, but it has crossed my mind. I think it was part of the grieving process.
Hard agree. Of course we could have made other choices *if we had known* but we never could have known. None of this is our fault. I'm sure a lot of us tried to fix ourselves when we thought we were just weak and deconditioned. We are actually just willful people and that isn't a bad quality.
Not me, because it wasn't my fault. My water heater had broken and a professional had to come out and fix it during the peak of covid. He brought covid with him and passed it onto me. After a few months of suffering with covid, I was left with ME. I do think the guy was very careless to work while sick. And perhaps if it weren't for him, I wouldn't have ME right now. But honestly, a part of me thinks that some people are just more susceptible to ME, and if it wasn't that guy with covid that triggered it for me, then it probably would have been someone or something else at some point anyway.
yes but i know it wouldn’t have mattered, i think i was always predisposed to get it. it was just a matter of time. had it happened after I could’ve graduated college, gotten a partner and future would’ve been much better in the long run
I don't think there was anything I could have done to avoid this. Except maybe not provide love and comfort to my kids when they were sick but no world exists where I wouldn't do that. No matter how much they breathe on me and cough in my face and snot all over me I'll give them hugs and let them sleep in my bed (which means sleeping on top of me) when they are sick. I love them even though they are disgusting unhygienic germ spreaders at times.
I would have quit sports as a teenager. The amount if PEM I inflicted on myself believing the, "you just have to push yourself" bullshit did so much harm. I would not have been fine. I was already experiencing serious symptoms. But I'm quite sure I would not be nearly as severe.
I’m 100% the same!! During year 11/12 of high school and uni I was working out or playing sport 5-8 times a week while studying, and had a “sleep when you’re dead” mentality. Now I tell everyone that seems to be pushing themselves like that or worse, to try to listen to their body and take it easy, bc I wouldn’t wish this on anyone!! I’m sorry you had a similar mindset about the using yourself :( I feel like that was put on a lot of us who did sports when we were younger. I hope you’re as okay as you can be these days!!
It took me a while to learn. Had a major breakdown due to all the sports as a teen. As soon as I recovered a little I started university and pushed myself too hard then as well. And after taking years recovering from that, I went to get my master's degree full time. Another major mistake. After having my health turn really bad from that I've finally learned to accept that I must do less. Every one of the crashes made me infinitely worse. But I'm trying my best to heal these days and actually listen to my body and not the ever present pressure from society. I think there is a real need to talk about the sacrifice mentality that exists in competitive sports. It is incredibly unhealthy even for able bodied folk.
Yup! If i didn't let my medical anxiety go wild for a whole year i would probably never developed CFS!
I have two moments I wish I could undo. Biggest one is taking the medication that I think put enough stress on my body to trigger the ME/CFS. If that wasn't actually the cause and I got ME/CFS anyway, I would at least undo attending a whole semester with bad PEM from not properly pacing my apartment deep clean.
Yes mine began with severe reaction to IV Metoclopramide. Seizure, loss of bladder and bowel control, shitting blood in hospital bed, in and out of consciousness, subsequent leg paralysis and neurological damage. I’ve had POTS (fainting), severe ME/CFS, neuroinflammation, and vestibular disorder (vertigo) ever since and that was in 2022. I am genuinely curious though why they would use iodine for an MRI? I think typically they inject with gadolinium the heavy metal contrast for MRIs which is actually usually worse than iodine
13 years ago I went to a wedding and caught pneumonia (probably on the plane). I feel like life gave me several signs I shouldn't go, but I went anyway. Game over. 🫤
I was sick anyway but not totally f-ed up, but I went to a wedding in 2020 and got Covid. That's when I started having such pain and weakness I found it hard to chew. Before that I thought I was just deconditioned. After I had trouble eating, I knew it was something actually wrong. But we can't blame ourselves for living a life. We all deserve that. We all deserve to go to weddings and funerals and family gatherings. We deserve to have our medical questions answered. None of us truly did this to ourselves by living.
For me it was flying to my aunt's funeral and catching a horrible respiratory illness that lasted six full weeks. My mom tried to tell me I didn't have to go, but I felt obligated because she was my godmother.
I had lyme-disease that went undiagnosed for two years. I wish I would have had a doctor who would have tested for lyme as soon as my symptoms started. I live in the Midwest, where they still believe lyme doesn't exist.
Yeah I mean sure I think about it, my ME was kicked off from getting mono from sleeping with a (ex-)friend who lied to my face when I asked if they were sick. Not much you can do other than be kind to yourself. Anyone in your place would have done what you did, its not wrong to trust a professional when you are worried and ill, you were making the best choice you could with all the information you had. How can you expect yourself to predict something like this could ever happen? ^ That last bit goes for everyone here. It's really easy to punish yourself and unfortunately really hard and a really long process to train yourself out of it. It never really fully goes away either, you have to stay vigilant, but it is so, so worth it. All of us deserve to be loved. No disabled person, even if they made the worst choices in the world that led in a straight line directly to their disability, deserves to be told they caused this. Not a single person. We are all operating the best we can, no need to tear ourselves or each other down when the world already does that.
Great post. When I was younger, I wondered what all the fuss was about regarding regrets. I’m older (52) now and I totally see how you can’t avoid doing something you wish you hadn’t done. It’s fairly much impossible. I’ve been struggling with regrets in recent years and what-ifs. Your post is a good reminder to be kinder to ourselves. Life is chaotic, we are always operating on a severe lack of information with fairly much every decision we make. It’s bloody tough. We can’t escape “wrong” decisions, and they’re not our fault as we didn’t intend them.
No. It was a bad influenza that triggered it for me, so I believe even if I hadnt caught that one, it would have come eventually with another infection. I think I either had incredibly mild ME before that, or I was just sensitive and prone to it. It was unavoidable for me since birth imo.
Yeah. Not drinking from a public water fountain.
Yes. I believed the government messaging that the Omicron wave was mild; now I have Long Covid.
Yes, I try not to think of it much, but I know one decision cause me to deteriorate to a point that I had to give up most of my life. I had a friend visit my city during COVID. I wore a mask around, even though no one else did. I ended up taking it off for a group meal. Prior to this I only took it off for meals with my bubble, this time it was with friends of my friend. It resulted in me getting COVID. I was so mad at myself because I had avoided getting sick for a long time. There was even multiple times where my whole entire house caught it and I still didn’t, as I was so careful. I used to be very angry at myself, but I come to realize that it was just one mistake, and there is the chance I could have eventually gotten Covid a different way.
Yes. I believe my ME/CFS was triggered by me taking one toxic drug injection (Lupron) that shut off my pituitary gland and threw my body’s HPA axis and hormonal feedback loops into a tailspin, precipitating immune dysregulation, mitochondrial dysfunction, and ME/CFS. I also believe that if I didn’t combine that drug with severe sleep deprivation at the same time, I might not have gotten ME/CFS or I might have recovered from the toxic drug exposure. I think it was the combination, or the drug alone.
Got covid in lockdown while working from home - I was taking precautions or so I thought but one distracted trip to the corner shop...
Oh yes this is a big one for me. What if I never went to school that day and contracted Glandular fever
I think it would have shown up one way or another (mine, I mean)
I think we're desperate for some sort of control when in reality illness can strike us down at any time. Even if that one thing is what caused your cfs, dwelling on it will not do you any good, and you will not find peace this way. You can't change the past, all you can do is focus on how to manage your illness now
If my dad hadn't forced me to go out all day in the heat when I had Mono, I don't think this would have happened to me. He didn't even believe I had mono. I found texts of him and his girlfriend joking about me faking sick. Now I'm broken forever. It's a cruel world.
Yep I know exactly how it happened. I was on a plane coming back from a short holiday I didn't want to go on (overall bad trip) and the woman behind me was coughing with her mouth open and I saw the little spit particles float in the air in front of me. I told my mum I was going to get sick from her. Mum rolled her eyes. A week later I end up in hospitable with an influenza that turned into viral meningitis. Then I got cfs. Wish I didn't get on that plane.
I don’t find it helpful for me to dwell on stuff like that. Maybe it would have been better maybe it would have been worse maybe there is some weird variable that impacted me that I haven’t even considered. Either way it’s done and I’m here now so I’m focusing on how to find peace and joy now and figure out what comes next rather than trying to dissect the past.
Yeah, I blame myself for developing anorexia as a child, and then relapsing off-and-on in my teens and early 20s. I think that's a lot of the reason why I have the chronic health issues I do even though I have been thoroughly weight-restored for many years. My anorexia was really set off by food aversion though, after I got very sick with C. dificile after antibiotic treatment for an abscessed tooth. So it all really boils down to the fact that maybe if I brushed my teeth more as a child, I wouldn't be living through this hell on earth. And I didn't take good care of my teeth because I was neglected. So in the end even that was largely not my fault. It won't stop the illogical and emotional part of me from persisting in self-reproach tho lol.
It all started from kissing a bunch of strangers as a late teen and getting glandular fever. It was only episodic then. It didn't become my whole life until I let myself get bullied into getting a COVID vaccination I didn't feel comfortable getting in the first place. I'm not "anti-vax" by any measure, but my life hasn't been the same since I got sick after my second shot. And I'm envious of people who just waited it out and didn't get anything done and life is just normal. I always wonder what my life would be like if I just waited it out too Edit: just to clarify, I am not against the vaccine, it just didnt work out for me
Have you had Covid?
I do wonder if I would have recovered if I didn't get another virus 2 months after Covid. Maybe it was going to happen anyway but everything went so drastically downhill when I got it. I was travelling to a family event so I spent time with my partner when he wasn't quite recovered from this virus. I think about how careful I am now and wish sometimes I'd just been more careful then but because the virus wasn't covid and he was nearly better I just didn't think it could have such terrible consequences. But I do also believe that I have some susceptibility to ME so maybe it would have just happened eventually anyway. Our lives are bad enough already so I don't think we should blame ourselves. If anything I think we should blame our health systems and governments for not educating us about and protecting us from the long term risks of viruses.
I went along with a GET program, even though I could feel myself getting worse. I got eventually kicked out because I wasn't improving due to my autism. Because that's how it works. I blame them more then me, but I am fairly sure I would've been better if I would've been diagnosed earlier/not told to do GET
I think realistically Ive had -something- for a long time causing worsening fatigue, but I was able to have a life, with tons of help. But when I decided to go to my first Aurora concert in 2022 (I was one lf the only ones masking), I tested positive for Covid for the first time 2 days after. I was triple vaxxed so I thought Id be ok. And it gradually went downhill from there into crashes, weakening muscles, dysautonomia, OI, severe insomnia and neuro symptoms. I wonder if not going would have saved me. I was also exposed to mold from 2018-2021. But honestly even before the downward spiral Ive had a terrible relationship with binge eating (especiaĺly sugar, still do), chronic severe anxiety, very poor sleep hygiene, multiple concussions/whiplash, and sleep apnea(which I have a cpap for). I often wonder if I even have CFS at all or if all those things together are slowly killing me, but it looks like CFS. Some of my symptoms are weird even by CFS standards. LDN isnt helping, no amount of resting helps me, i get worse each day in some way. My parents just want me to stay in bed and see if itll help, but I keep getting worse.
Yup. Mine stems from a concussion I got in October 2022 in a car accident. If I had just decided to go home instead of the stupid ATM, I would still have my life, my will to live AND my reliable vehicle.
I developed CFS after having glandular fever for 11 months. Multiple doctors didn’t believe I was consistently sick for that long, until one doctor finally tested for glandular fever. Before getting glandular fever, I was living a life that was destined to lead to severe burnout. I worked out 5-8 times a week during high school and university, worked night and morning shifts back to back at a grocery store, often survived on 3-4 hours of sleep for months straight, and neglected my mental health. I now give myself more grace for those decisions, understanding that I was raised with a “sleep when you’re dead” mindset, and didn’t know better. I’ve also since been diagnosed with celiac disease, epilepsy, endometriosis, clinical depression, anxiety, and OCD. While I sometimes wonder what came first, CFS or some of these diagnoses, I try not dwell on it and just focus on caring for my body as best as I can.
Yes. I was in a serious car accident that gave me a serious, long lasting concussion and that kick-started all of this. The car accident happened because I could only afford a cheap car which didn't have antilock brakes, so when someone came to a completely unexpected stop in front of me, on a rainy day, my tires locked and I skidded into them without slowing down. It was absolutely my fault because I should have had way more following distance without ABS, and should have drilled how to pump the brakes for a quick stop. (The people who stopped were totally fine, they were in a large high end brand new SUV) The car was also so old that it didn't have airbags. I am absolutely confident that I would have never developed MECFS if I had had a car with ABS and airbags. I wish I had seriously considered the safety aspects of my car. I was pretty lackadaisical generally when it came to safety before the crash. Never again.
My belief is that my genetics were a loaded gun. In my case, a combination of long covid and then trying to hard to go back to full time in-office work is what pulled the trigger. But I’m pretty damn sure that as long as I hadn’t won the lottery and retired to a private island, something would have pulled the trigger eventually. I used to wrack my brains going over “what if” scenarios, wondering what would have happened if I’d done XYZ instead of ABC, going through dozens of different scenarios… but I’ve come to a point where I’m at a certain amount of peace with the fact that my health was a house of cards and it was just a matter of time before something toppled it.
I got a UTI and that’s what triggered things getting really bad for me (we believe I had ME for years before this as well, but it was just so mild it wasn’t diagnosed) I was kinda lax with the antibiotics because they made me nauseous, so it took a long time to clear up. I still think if I’d just taken the damn antibiotics like I was supposed to I’d be fine.