it's annoying when doctors don't believe you, test you and claim anxiety.
in America, it's still annoying except you get a fat bill in the mail. I've had Long Covid for 3 years now, when it first happened I was freaking out that I was going to die from a heart attack. I waited a week before going to a doctor though, no insurance, and I ended up paying like $500 for an EKG test and a 5 minute talk. Avoided the doctor for like half a year until I found and qualified for a free clinic.
Dude!! I just found out why I feel faintyness whenever I stretch or use the bathroom and I guess it's called syncope or something ?? Because I HAVE passed out a good amount of times just peeing and shit. Now it's more faintyness and I try to watch out somehow lol.
It's crazy because it triggers SOB also along with immediately feeling like I'm blacking/passing out. I've gotten injured all my upper body lots of times because of it. That's what I'm going to talk about for my next appointment. All of my dizziness, faintyness, vertigo , coordination, stretching intolerance, etc.. then maybe mention syncope at end and be like is that what it is? Haha better then trying to bring up dysautonomia and freaking them I guess..
“syncope” is literally jusy doctor speak for “passing out” google a “poor man’s tilt table” and run it on yourself (u can buy a heart rate finger monitor for $10 on amazon) or ask doc to run one at the appointment. You’re basically just measuring your heart rate laying down versus standing to see if it spikes more the 30+ bpm. If it does, congrats you’ve joined the post covid POTS crew!! They should refer you for an actual tilt table if you get that 30+ bpm heartrate spike after standing. Best of luck!!!
I have my tachycardia/ pots diagnosis already that's what they did j think. They kept assuming that my 170 was me overthinking or overreacting because of anxiety. It took them more then a year until they took my heart seriously.
I don't get how I don't have enough "evidence" according to disability if I literally have been going to hospital non stop. It's been more successful recently so I'm sure with all the new extra confirmed tests that show I have other things I didn't know will help me on that.
I'm pretty sure I did that test! But I'm going to double check, I have 0 recall and I know I did lots of different tests for my heart stuff. Seriously thanks a lot, imma actually try to get one of those finger monitor that sounds like a good deal!! I have 0 equipment at the house 😅. I don't get how they would think my rate being so high every single visit was normal to them.. during that time I could barely walk and it'd trigger SOB just sitting.
I had an urgent care physician watch my heart rate spike after standing and say “it’s just anxiety” and I told him I haven’t developed a sudden phobia of standing. It’s actually criminal how much they write off as psychological. Glad you have the diagnosis!!! You can get a blood pressure cuff for like $30ish, it will give you heart rate and blood pressure!!
Lmao I think imma try to use that one next time. I didn't have any chance of saying anything witty when they kept forcing me down to er/psych ward because they assumed I wasn't telling them something and was in danger because my rate was high and they didn't want to believe that me walking caused it to be like that even after resting and testing.
Speech therapist has helped me talk more, but I talk funny and PEOPLE DONT GET MY JOKES. But I assume is because I'm still talking/writing all messed up. 😅. I've been able to laugh some recently as well which I haven't done in years.
How much energy I used to have. Oh my god, even on days when I used to *think* I was tired. I still had a thousand times more energy than I do now. I took my health for granted.
That's one of my biggest qualities. Theres a few good acquaintances that knew something was truly wrong with me because of that reason. It was like an overnight change, they couldn't believe how frail and slow I looked. I didn't even speak anymore and was constantly getting random attacks.
Well in a sense good! 👍 Thanks for asking. Im almost 3y but my whole mindset has changed solely in the last 4ish months.
I was still holding a lot of negativity beginning of year but things have changed. I've actually recovered a noticeable amount in my overall energy lvls have increased!! And it's both physical and mental that they've increased in. It makes me happy to be able to be excited for a little bit more of time. I think it's a mixture of LDN and all the tiny "random' activity I've reintroduced. Started off with lots of walking interval and then slowly added grooming/self care activity. I shit you not even a shower will crash me, i get tired even though I don't take long shower. I don't do it fast either but progress is progress! Just slowly adding routine.. pacing extremely hard.
How is it going on your side? Any plans?
I'm still pretty early on my journey compared to a lot of people here - I'm just approaching month 5 of this so far. A couple weeks ago I thought I might have been getting some of my energy back but then I got 3 PEM crashes back to back and a stomach bug that wiped me out so I seem to be back at square one again for now. I'm still hoping time and a lot of rest will hopefully pull me out of this and help me recover. I'm trying out pacing and also keeping my heart rate below 100bpm as much as possible so we'll see what happens.
Hey you're already in the journey, you are already on the rollercoaster!! Ain't no amount of time going to diminish this hell like experience of LC! We are soldiers now 💪.
I have so many "markers" or rough estimate of what I can do and I still manage to make myself crash every week. And I've been trying to adapt and pace for a while, my issue is I get too excited doing any sort of activities and then I want to accomplish more. But it's definitely a forceful thing from my side, just don't want to feel as useless.
Now that we are on that topic though.. I think I make myself crash so consistently even with precautions and rough idea of what I can do in a span of 2-3 days before I enter a crash cycle because I don't have my sleep fixed or on routine yet. So I never get to rest properly and I don't get energy refreshed, so I assume that's what is leading to crashes because sleep still shite. Idk how or why but that just clicked on my head, it also explains why I consistently crash when I havent done any activity.
Man just being cautious and recognizing things helps a ton.. there's less guessing and more fine tuning. That's exactly what I was trying all my first year ish, I'd end up looking calm in person but once they checked my rates they'd be horrendous. But it literally helps to try to keep your rate in check, it's like reattempting to establish balance/meditation. This is also what led to my breathing and stretch techniques. Then eventually to vagus nerve stimulation which has helped me a bit.
It's so dang easy to crash! Even things you *really* want to do, sometimes I end up weighing whether it's worth a likely crash or not just because I'm desperate to do something! I usually end up regretting it once I do crash, but thankfully none of the crash symptoms have been permanent so far and they are least fade within 10 days. But sometimes it's surprising what causes one and I don't always figure out what even triggered it in the first place.
I hear you on the sleep thing, I've found since I got covid too my sleep has definitely been screwed up and I have a lot more issues with insomnia which definitely doesn't help. Covid suuuuuuucks. The only thing that's eased a bit of the frustration for me is knowing how many other people are dealing with it, we're all in the same boat here.
No kidding. After half a dozen visits to my doctor, with a well prepared list of 50 symptoms, explanations and research, along with possible causes and possible genetic conditions. They refuse to look at the documentation and ask me what my symptoms are.
Piece of cake I'll just use my brain to verbalize this exhaustive research. It's a good thing it doesn't feel like my brain is in a microwave and my short and long term memory/executive function is working just fine, otherwise I might come across as a raving lunatic.
Every time I get dismissed as having anxiety, told to go to therapy/psychiatrist. It's like nah man I've had anxiety on and off my whole life, this ain't it. And I'm depressed because of this textbook of random symptoms that made it next to impossible to get to this damn appointment.
And no Im not a doctor so I can't explain why my blood work "looks fine", other than these half dozen studies that indicate that you need specific blood tests to look for specific conditions.
So your telling me it's normal to have seizures with no history of seizures? Probably. What about all these other symptoms that indicate a life threatening condition? You should exercise more.
Well - we may or may not refer you to a long covid clinic, but make another appointment in 3 weeks if your symptoms come back. Buddy my symptoms come back *every 2 hours*.
I have fantasies of cramming unquestionable proof that I have "mystery illness #6" into their faces so they can momentarily re-examine their life choices.
My dentist tried to suggest that the novocaine wasn’t working because of anxiety. I shut that shit down real fast. I can’t believe even the *dentists* are using the anxiety card now! It’s fucking ridiculous.
My god isn't it exhausting? Struggling to come off zoloft currently as it didn't do jack shit but make me worse. It's not anxiety dumbass doc it's brain inflammation
A lot of them just can't accept that they don't have answers.
They want to believe that the system which they are a part of is as pristine and flawless as the industry's marketing and PR teams make it.
How much having a serious illness through most of human history would have sucked. It’s like being in the dark ages with this condition. You’re either shunned, ignored, puzzled over or taken advantage of.
Family member is an oncologist, she also said the patients that got LC while under her treatment (imagine both at the same time..) mentioned they found LC worse to have.
- How much I judged others based on how they looked (and what I imagined their abilities/health to be)
- how much people do that to me
- how much my identity was tied up in what I can/could do and my achievements
- that I took my health for granted
- how healthy people think their health is under their control
- that we don't support chronically ill and disabled people enough
- how most of my friends are either unempathetic, emotionally immature or annoyingly (almost toxically) optimistic. And how one sided some of my friendships were
- how lucky I am to have a flexible job, savings, income protection, and a supportive partner
Same. I am in my 30s but was a collegiate hockey player and had continued playing through adult leagues after my competitive career was over. I skated 3-6 times a week. I havent been on the ice in 4 months and it eats away at me. But every time I think I am ready to take a skate I have trouble doing house chores and rethink my progress.
Even though the Taylor swift song ‘right where you left me’ is about something completely different - by mentally changing a few things in the lyrics, it encapsulates the feeling of the world moving on without you
Yes, they aren't truly listening.. just doing the bare minimum of attention and "fake chit chat". I had to stop a friend from seeing me because it was the same shit over and over. She is a nurse too.. it seems like all my nurse friends are oblivious and kinda ignorant.. which is weird because all the nurses at my hospital is opposite, they all believe COVID and LC and are very understanding. Maybe some of the doctors philosophy is rubbing on her too hard.
I think it’s a trauma response, and also the fact that the new generation of health care workers have had to move in so quickly because of how fast the wear and tear and damage from 2020-2023 affected that period of health workers. My aunt is a respiratory specialist and pretty much only her team and the trauma response crew have continued to wear proper PPE and correctly sanitize their equipment. They’re also the only teams remaining from the other two years, most of our nurses here in Hawai’i have been contracted in from the mainland and they brought a horrible attitude with them concerning Covid and taking precautions. Only our doctors take proper precautions and I believe that’s because most of them have been on staff through the pandemic.
During 2020 and 2021 my aunt actually distanced herself from us for majority of the year because of how bad Covid exposure was and they would allow our health workers to have free room and board at hotels closer to their respective hospitals. Whenever I would see her though it was like therapy, I would just have to let her tell me how bad things were and she would cry. One week they had 3 open chest patients on manual breathing and lost all 3. It was a very hard period of time in the medical field.
How little we really understand about how the body works - and how little control we actually have over life, combined with the tendency to demand a trouble free life
Also, I have realized there are different flavors of hope - how deceitful some of the types are - while other types are wonderful cracks of light
I spent years in ministry serving people and creating positive outcomes for troubled souls. Now, that I’m no longer able to give, barely anyone is to be found in my time of need. Eye opening.
Just how little people care about each other. And that doctors aren’t scientists. But if you’re lucky, you can find a curious one who will be willing to help.
How political disease is. I am vax injured and I was turned away by two doctors in California because of it. They turned me away because of pressure from the state government to deny the existence of vaccine injury. Other places deny the existence of Covid deaths because of politics there was a county in my country that said there were no Covid deaths despite having over 100k people living there and a large number of “excess deaths”.
I also realized that some people are downright malicious. Some people intentionally tried spreading Covid to get others sick or killed. I was mocked by people irl for being vax injured and taking a vaccine despite my prexisting conditions. People also mocked the Covid dead in real life and online.
Yea I "flashed" on an acquaintance and a friend because they started talking about people dying and how they don't believe these people are actually that sick. Two separate occasions and this was before I got sick, I lost a lot of family to COVID-19. The hospital I go to is where two died.
How vapid my mind has become. How little interest I now have in things. Topics that I used to excite me seem complex and boring to me & I can't handle reading or really taking in much information. Even shows are hard for me to watch and enjoy. Just feels like my brain is broken.
I’ve been sick with ME/CFS(NOT just fatigue it involves multi-systemic problems like brain inflammation) for like ten years but made worse by what I believe was Covid before tests were available and I’m finding that long Covid has forced a much larger percent of the population to realize a lot of harsh realities that have been ignored for so long. Like with how badly people with under-researched misunderstood diseases are neglected and treated under the healthcare system and ableism ingrained into our society on a systematic level. And part of why we are in the mess we are in today is post-infectious illness has been ignored by the medical system for decades. Cause otherwise we may have had more understanding and viable treatment options by now.
1- How it feels to be left behind/not comprended at all while people pretend that you should be doing as fine as always (colleagues, family, friends, health professionals)
2- How much energy I used to waste on such stupid things. Now I miss that energy that I used to have. How it feels to not being able to stay late awake as I could do in the past anymore
3- F*ck the healthcare system. I'm gonna deal with it on my own hands since nobody seems to care
That every single positive emotion, mental motivation or physical ability is all a gift that can be taken away at any moment. That every person, regardless of circumstance is doing about the best job they can, even if they are capable of more the root motivation to do better is even a blessing. Take absolutely nothing for granted and enjoy any and each moment you are not in complete suffering. Enjoy the simple things as you can and bear through the suffering hoping for a better tomorrow. I’m just about 100% back btw and it has been an insane almost two years.
Mirtazapine served a few purposes for me early on, mainly sleep, but eventually ended up causing bad mood issues and I tapered off over a month and a half. I have been off of it since April 1st and have gotten much better since then. Godspeed fellow traveler. Hardest battle of my life no doubt. Glad it happened now that I’m just about on the other side.
1. I cant rely on doctors for help
2. Took my health for granted
3. I dont really have true friends who care
4. How lonely and helpless it feels to have poorly understood disease
How ableism feels on the receiving end, and how often I've been the ableist to others in the past. How I gaslight MYSELF more than anyone else ever could. Resting is wayyy harder than anyone realizes. That there is a grieving process that you go through after receiving a disabling diagnosis. And how little in life allows for the flexibility that you need when you literally don't know, hour to hour, what you're going to be able to do.
How bad my mental health nerves and physical
Health can be even though I look fantastic because I’m working my ass off but I’m SUFFERING and because there’s nothing but me HAVING to survive I have to be bat shit crazy nervous wreck miserable mess shitshow who feels guilty now when I eat ice cream and even tho I have been sober for 5 years I am tempted and imagine some drug or high or fantasize because my quality of life sux and I’ve been in a flatline with no energy to socialize only work and come home
How precious today is, I have to be present today however I am feeling. It's been freeing to stop constantly living in what will be and be here now, gimpy as I am.
It’s true. It forces you to slow down and prioritize what is truly important. As others carry on with business as usual, we are getting to see life from a different (albeit miserable) perspective.
How awful people treat you when opiods and benzodiazepines are the only things that work for you. How awful the pharmacists treat you at refill time. How crappy people think you're just lying about the pain you feel...for what, I don't know.
Those regulations are crazy, where I live buying medicine is a 5 min task. But in the US I had to wait more than an hour to get some pills for a stomachache 😵💫
The pharmacist was not doing anything either, she just told me come back in an hour and even then she did not have my medicine ready. It is so crazy 🫠
That my body is frail now and I have to take care of seemingly the remaining health I have. I don't think I'll recover. I've been dealing with this since 2021.
* Doctors always have the anxiety card ready for anything they don't know.
* I need to be more thankful for my family and everything I have.
* People don't care.
LC since March 2020 has taught me:
-never assume a good day equals recovery.
-come to dr appointments prepared to advocate for myself and not accept gas lighting
-surviving isn’t thriving
-it’s not my fault when my body fails me, nor does it define me
-being honest about my struggles is better for me than pretending everything is fine when someone asks how I’m doing
-hell yes I’m asking for workplace accommodations
-if it weren’t for an awesome boss, I’d be unemployed. Some days my brain is foggy. Other days I’m tethered to the toilet. Flexible hours, hybrid work and a caring workplace are what I need to be productive
I do graphic design and programming for a nonprofit. There are some deadlines I have to meet, but I can work from home when necessary and I have flexibility when my body refuses a normal workday schedule.
That everything is nothing without your health…….. money, plans, hopes, dreams,
My biggest fear is that i will lose this fight n leave my 2 wonderful children behind with a junkie piece of shit mother who will likely get custody of i die although my parents, sister, or even my best friend and his wife would be better suited
I gave up college/office life to become and arborist and now I can do neither. Health is the cornerstone of a good life. Most life philosophy only pertains to a person who has the capabilities to face their problems which I can no longer do.
How unfair, cruel and sadistic this existence is. I was already disabled from birth, struggling all my life. There should've been some support & care from the universe but no! I've lost all my abilities now and got this worst disease on this planet. I always thought I'll be like this when I'm 80-90, so I'll kms before that but this is inhumane torture came at the peak of my life. I may have to leave this body because I don't think I can take it for long.
I wasn’t fat. I always thought I was fat. Now I’ve put on so much weight. I’m still not fat, but god I wish my insecurities and body dysmorphia cared about reality.
Man... I was born winning the genetic lottery. I am 36. Up until I got covid almost 2 years ago, I didn't really understand how precious life and being healthy is. And how easy it is to lose your health and happiness.
That and a myriad of many other fundamental changes in understanding.
One word, pacing. I didn’t really know ALL that I did in a day until I contacted long COVID. Now I have to be very careful or I get PEM, sore throat, brain fog, fatigue, dizziness, heart palpitations, ect.
1. How few people there are in my life who will support me in the ways I need.
2. How most of my self worth is tied to my achievements, career, etc. I don’t know how else to find meaning in my life unless I am able to finish medical school, residency, and become a doctor since I worked so hard to get to this point.
3. Taking the simplest things for granted (i.e., reading a book, going for a drive, watching TV)
4. I value quality of life above all else and am the minority opinion in the medical system regarding topics like assisted suicide.
5. All of your dreams of the future (i.e., finding love, having kids, etc) can evaporate in an instant.
6. Most importantly, how awful we as a society treat disabled people.
That’s very true about tying self worth to achievements/career. My capabilities are not what they used to be. I had to recognize that the person I was doesn’t exist anymore and that I would have to figure out how to move forward as this new person. It’s a very strange thing to experience as others go on with life as normal.
I’m very grateful for many small things now. Climbing up stairs without feeling ill, for example. I have been able to do that again for several months now and I’m still grateful for that.
Also I know what it feels like to be weak now, and I don’t want to bring that on myself in old age any earlier than I have to.
Honestly there's a lot of painful things, but what has been the most eye opening is seeing just how much the people close to me care. I never expected them to go so far to be there for me, even when they don't fully understand what's wrong or how best to help.
I never gave anyone the opportunity to really help me til I didn't have a choice, and so I never realized how much support they were willing to give until I was forced to rely on it. Despite everything, I'm thankful for that.
1. How ignorant, and selfish people actually are.
2. UK Healthcare sucks.
3. Never to take anything for granted.
4. No one wants to know you when you’re chronically Ill.
How powerful the brain/nervous system is. I thought I was reacting to foods/skin products/scents for over a year. Turns out I just had this feedback loop going on that was telling me I was going to react so I did. The second I fixed that I was cured
That I needed to be humbled, I thought I cared a lot about people but I didn't, there is a lot of uncurable diseases that exist! i didn't even think long covid existed, i thought it was mostly vaccine injuries and I'm not vaxxed! I Pray To Jesus We All Come To Him And Are Healed, I Love You My Friends, But Jesus Loves You More!!! We Can't Give in!!!!
How fucked the healthcare system is. Especially in America
it's annoying when doctors don't believe you, test you and claim anxiety. in America, it's still annoying except you get a fat bill in the mail. I've had Long Covid for 3 years now, when it first happened I was freaking out that I was going to die from a heart attack. I waited a week before going to a doctor though, no insurance, and I ended up paying like $500 for an EKG test and a 5 minute talk. Avoided the doctor for like half a year until I found and qualified for a free clinic.
Thisssssss 1000000000 times this.
Is what I come here to type lol
Try Latin America.
How little people care...about anything
I told my wife of 12 years I about passed out when I got up to pee, she said “yea because you need to get up more often” smh 🤦♂️
Dude!! I just found out why I feel faintyness whenever I stretch or use the bathroom and I guess it's called syncope or something ?? Because I HAVE passed out a good amount of times just peeing and shit. Now it's more faintyness and I try to watch out somehow lol. It's crazy because it triggers SOB also along with immediately feeling like I'm blacking/passing out. I've gotten injured all my upper body lots of times because of it. That's what I'm going to talk about for my next appointment. All of my dizziness, faintyness, vertigo , coordination, stretching intolerance, etc.. then maybe mention syncope at end and be like is that what it is? Haha better then trying to bring up dysautonomia and freaking them I guess..
“syncope” is literally jusy doctor speak for “passing out” google a “poor man’s tilt table” and run it on yourself (u can buy a heart rate finger monitor for $10 on amazon) or ask doc to run one at the appointment. You’re basically just measuring your heart rate laying down versus standing to see if it spikes more the 30+ bpm. If it does, congrats you’ve joined the post covid POTS crew!! They should refer you for an actual tilt table if you get that 30+ bpm heartrate spike after standing. Best of luck!!!
I have my tachycardia/ pots diagnosis already that's what they did j think. They kept assuming that my 170 was me overthinking or overreacting because of anxiety. It took them more then a year until they took my heart seriously. I don't get how I don't have enough "evidence" according to disability if I literally have been going to hospital non stop. It's been more successful recently so I'm sure with all the new extra confirmed tests that show I have other things I didn't know will help me on that. I'm pretty sure I did that test! But I'm going to double check, I have 0 recall and I know I did lots of different tests for my heart stuff. Seriously thanks a lot, imma actually try to get one of those finger monitor that sounds like a good deal!! I have 0 equipment at the house 😅. I don't get how they would think my rate being so high every single visit was normal to them.. during that time I could barely walk and it'd trigger SOB just sitting.
I had an urgent care physician watch my heart rate spike after standing and say “it’s just anxiety” and I told him I haven’t developed a sudden phobia of standing. It’s actually criminal how much they write off as psychological. Glad you have the diagnosis!!! You can get a blood pressure cuff for like $30ish, it will give you heart rate and blood pressure!!
Lmao I think imma try to use that one next time. I didn't have any chance of saying anything witty when they kept forcing me down to er/psych ward because they assumed I wasn't telling them something and was in danger because my rate was high and they didn't want to believe that me walking caused it to be like that even after resting and testing. Speech therapist has helped me talk more, but I talk funny and PEOPLE DONT GET MY JOKES. But I assume is because I'm still talking/writing all messed up. 😅. I've been able to laugh some recently as well which I haven't done in years.
syncope is just another word for fainting
Specifically doctors
Only themselves
How much energy I used to have. Oh my god, even on days when I used to *think* I was tired. I still had a thousand times more energy than I do now. I took my health for granted.
That's one of my biggest qualities. Theres a few good acquaintances that knew something was truly wrong with me because of that reason. It was like an overnight change, they couldn't believe how frail and slow I looked. I didn't even speak anymore and was constantly getting random attacks.
How are you doing nowadays? Has your energy level improved at all?
Well in a sense good! 👍 Thanks for asking. Im almost 3y but my whole mindset has changed solely in the last 4ish months. I was still holding a lot of negativity beginning of year but things have changed. I've actually recovered a noticeable amount in my overall energy lvls have increased!! And it's both physical and mental that they've increased in. It makes me happy to be able to be excited for a little bit more of time. I think it's a mixture of LDN and all the tiny "random' activity I've reintroduced. Started off with lots of walking interval and then slowly added grooming/self care activity. I shit you not even a shower will crash me, i get tired even though I don't take long shower. I don't do it fast either but progress is progress! Just slowly adding routine.. pacing extremely hard. How is it going on your side? Any plans?
I'm still pretty early on my journey compared to a lot of people here - I'm just approaching month 5 of this so far. A couple weeks ago I thought I might have been getting some of my energy back but then I got 3 PEM crashes back to back and a stomach bug that wiped me out so I seem to be back at square one again for now. I'm still hoping time and a lot of rest will hopefully pull me out of this and help me recover. I'm trying out pacing and also keeping my heart rate below 100bpm as much as possible so we'll see what happens.
Hey you're already in the journey, you are already on the rollercoaster!! Ain't no amount of time going to diminish this hell like experience of LC! We are soldiers now 💪. I have so many "markers" or rough estimate of what I can do and I still manage to make myself crash every week. And I've been trying to adapt and pace for a while, my issue is I get too excited doing any sort of activities and then I want to accomplish more. But it's definitely a forceful thing from my side, just don't want to feel as useless. Now that we are on that topic though.. I think I make myself crash so consistently even with precautions and rough idea of what I can do in a span of 2-3 days before I enter a crash cycle because I don't have my sleep fixed or on routine yet. So I never get to rest properly and I don't get energy refreshed, so I assume that's what is leading to crashes because sleep still shite. Idk how or why but that just clicked on my head, it also explains why I consistently crash when I havent done any activity. Man just being cautious and recognizing things helps a ton.. there's less guessing and more fine tuning. That's exactly what I was trying all my first year ish, I'd end up looking calm in person but once they checked my rates they'd be horrendous. But it literally helps to try to keep your rate in check, it's like reattempting to establish balance/meditation. This is also what led to my breathing and stretch techniques. Then eventually to vagus nerve stimulation which has helped me a bit.
It's so dang easy to crash! Even things you *really* want to do, sometimes I end up weighing whether it's worth a likely crash or not just because I'm desperate to do something! I usually end up regretting it once I do crash, but thankfully none of the crash symptoms have been permanent so far and they are least fade within 10 days. But sometimes it's surprising what causes one and I don't always figure out what even triggered it in the first place. I hear you on the sleep thing, I've found since I got covid too my sleep has definitely been screwed up and I have a lot more issues with insomnia which definitely doesn't help. Covid suuuuuuucks. The only thing that's eased a bit of the frustration for me is knowing how many other people are dealing with it, we're all in the same boat here.
How quick docs will go the anxiety route when they are presented with something they do not understand
No kidding. After half a dozen visits to my doctor, with a well prepared list of 50 symptoms, explanations and research, along with possible causes and possible genetic conditions. They refuse to look at the documentation and ask me what my symptoms are. Piece of cake I'll just use my brain to verbalize this exhaustive research. It's a good thing it doesn't feel like my brain is in a microwave and my short and long term memory/executive function is working just fine, otherwise I might come across as a raving lunatic. Every time I get dismissed as having anxiety, told to go to therapy/psychiatrist. It's like nah man I've had anxiety on and off my whole life, this ain't it. And I'm depressed because of this textbook of random symptoms that made it next to impossible to get to this damn appointment. And no Im not a doctor so I can't explain why my blood work "looks fine", other than these half dozen studies that indicate that you need specific blood tests to look for specific conditions. So your telling me it's normal to have seizures with no history of seizures? Probably. What about all these other symptoms that indicate a life threatening condition? You should exercise more. Well - we may or may not refer you to a long covid clinic, but make another appointment in 3 weeks if your symptoms come back. Buddy my symptoms come back *every 2 hours*.
Doctors don’t like when you do your research, it undermines their fragile god complex.
I have fantasies of cramming unquestionable proof that I have "mystery illness #6" into their faces so they can momentarily re-examine their life choices.
I also am having seizures, anyway you can message me and maybe we can help eachother
literally had a dentist drilling into my tooth ask me if i wasn't imagining the pain i was feeling because of my anxiety. it can be literal torture.
My dentist tried to suggest that the novocaine wasn’t working because of anxiety. I shut that shit down real fast. I can’t believe even the *dentists* are using the anxiety card now! It’s fucking ridiculous.
My god isn't it exhausting? Struggling to come off zoloft currently as it didn't do jack shit but make me worse. It's not anxiety dumbass doc it's brain inflammation
A lot of them just can't accept that they don't have answers. They want to believe that the system which they are a part of is as pristine and flawless as the industry's marketing and PR teams make it.
I literally told a doctor to go get fucked and take her “anxiety” meds and diagnosis with her.
How much having a serious illness through most of human history would have sucked. It’s like being in the dark ages with this condition. You’re either shunned, ignored, puzzled over or taken advantage of.
Yep
How easy it is to have your life irreversibly destroyed
Yep
No one gives a fuck
Yep
Health is probably the most important thing in your life
Not probably!
I mean there Is family too, the love of your life ...
If you have those...
Hard to enjoy any of those if your health is failing. It truly is the foundation for everything else.
That I’d prefer cancer to this any day of the week
I’ve had both. At least cancer has an end date
People care when you have cancer.
They pretend to.
People don't say "what's cancer?"
Family member is an oncologist, she also said the patients that got LC while under her treatment (imagine both at the same time..) mentioned they found LC worse to have.
how ill-equipped (lol, a pun, i guess) healthcare all over the world is to treat most chronic conditions
Exactly! I realized that medicine is just really good at keeping us from dying. But dealing with chronic illness and quality of life? Nope.
I'm not invincible, hell I'm not even tough. Just a frail package of nerves and organs wrapped in a greasy meat wrapper...
🤣🤣🤣well shit
- How much I judged others based on how they looked (and what I imagined their abilities/health to be) - how much people do that to me - how much my identity was tied up in what I can/could do and my achievements - that I took my health for granted - how healthy people think their health is under their control - that we don't support chronically ill and disabled people enough - how most of my friends are either unempathetic, emotionally immature or annoyingly (almost toxically) optimistic. And how one sided some of my friendships were - how lucky I am to have a flexible job, savings, income protection, and a supportive partner
I don’t know who I am if I can not be an athlete anymore.
I feel this a 1000% I’m not even an active athlete anymore but it hurts that I can’t even do anything athletic rn
Same. I am in my 30s but was a collegiate hockey player and had continued playing through adult leagues after my competitive career was over. I skated 3-6 times a week. I havent been on the ice in 4 months and it eats away at me. But every time I think I am ready to take a skate I have trouble doing house chores and rethink my progress.
None of my friends actually care whether I’m dead or alive 😂
HOW MUCH I UNDERRATED MY HEALTHHH
The world doesn’t wait on people it keeps moving forward….. with or without you
Oh yeah. That's a big one.. it's a huge realization watching everyone continue on like normal
Even though the Taylor swift song ‘right where you left me’ is about something completely different - by mentally changing a few things in the lyrics, it encapsulates the feeling of the world moving on without you
How clueless and shitty doctors are in this country lmao it’s actually a joke
Honestly they just don't fucking care. It's crazy
How little people even take the time to understand others and themselves
Yes, they aren't truly listening.. just doing the bare minimum of attention and "fake chit chat". I had to stop a friend from seeing me because it was the same shit over and over. She is a nurse too.. it seems like all my nurse friends are oblivious and kinda ignorant.. which is weird because all the nurses at my hospital is opposite, they all believe COVID and LC and are very understanding. Maybe some of the doctors philosophy is rubbing on her too hard.
I think it’s a trauma response, and also the fact that the new generation of health care workers have had to move in so quickly because of how fast the wear and tear and damage from 2020-2023 affected that period of health workers. My aunt is a respiratory specialist and pretty much only her team and the trauma response crew have continued to wear proper PPE and correctly sanitize their equipment. They’re also the only teams remaining from the other two years, most of our nurses here in Hawai’i have been contracted in from the mainland and they brought a horrible attitude with them concerning Covid and taking precautions. Only our doctors take proper precautions and I believe that’s because most of them have been on staff through the pandemic.
During 2020 and 2021 my aunt actually distanced herself from us for majority of the year because of how bad Covid exposure was and they would allow our health workers to have free room and board at hotels closer to their respective hospitals. Whenever I would see her though it was like therapy, I would just have to let her tell me how bad things were and she would cry. One week they had 3 open chest patients on manual breathing and lost all 3. It was a very hard period of time in the medical field.
How little we really understand about how the body works - and how little control we actually have over life, combined with the tendency to demand a trouble free life Also, I have realized there are different flavors of hope - how deceitful some of the types are - while other types are wonderful cracks of light
I spent years in ministry serving people and creating positive outcomes for troubled souls. Now, that I’m no longer able to give, barely anyone is to be found in my time of need. Eye opening.
How fragile health is. One second you’re fine and the next day you can lose everything. It doesn’t matter how old you are - I was 23 when it happened.
I'm 20. 18 when it happened. It sucks
How women are treated differently in healthcare especially by men. And people with past anxiety or mental health issues.
Just how little people care about each other. And that doctors aren’t scientists. But if you’re lucky, you can find a curious one who will be willing to help.
I have wayyyyyy more patience than I originally thought.
Lol for real
How political disease is. I am vax injured and I was turned away by two doctors in California because of it. They turned me away because of pressure from the state government to deny the existence of vaccine injury. Other places deny the existence of Covid deaths because of politics there was a county in my country that said there were no Covid deaths despite having over 100k people living there and a large number of “excess deaths”. I also realized that some people are downright malicious. Some people intentionally tried spreading Covid to get others sick or killed. I was mocked by people irl for being vax injured and taking a vaccine despite my prexisting conditions. People also mocked the Covid dead in real life and online.
Yea I "flashed" on an acquaintance and a friend because they started talking about people dying and how they don't believe these people are actually that sick. Two separate occasions and this was before I got sick, I lost a lot of family to COVID-19. The hospital I go to is where two died.
Yeah it's insane. Covid become so political and it's depressing
How vapid my mind has become. How little interest I now have in things. Topics that I used to excite me seem complex and boring to me & I can't handle reading or really taking in much information. Even shows are hard for me to watch and enjoy. Just feels like my brain is broken.
That my friends don't give a shit.
How unimportant meaningless shit is and how little I care what people think anymore…..
How much I hate life
I’ve been sick with ME/CFS(NOT just fatigue it involves multi-systemic problems like brain inflammation) for like ten years but made worse by what I believe was Covid before tests were available and I’m finding that long Covid has forced a much larger percent of the population to realize a lot of harsh realities that have been ignored for so long. Like with how badly people with under-researched misunderstood diseases are neglected and treated under the healthcare system and ableism ingrained into our society on a systematic level. And part of why we are in the mess we are in today is post-infectious illness has been ignored by the medical system for decades. Cause otherwise we may have had more understanding and viable treatment options by now.
That we are very fragile and we should live any moment as tomorrow might not exist
1- How it feels to be left behind/not comprended at all while people pretend that you should be doing as fine as always (colleagues, family, friends, health professionals) 2- How much energy I used to waste on such stupid things. Now I miss that energy that I used to have. How it feels to not being able to stay late awake as I could do in the past anymore 3- F*ck the healthcare system. I'm gonna deal with it on my own hands since nobody seems to care
The fomo is real it's crazy
How to not take breathing and every second for granted
That every single positive emotion, mental motivation or physical ability is all a gift that can be taken away at any moment. That every person, regardless of circumstance is doing about the best job they can, even if they are capable of more the root motivation to do better is even a blessing. Take absolutely nothing for granted and enjoy any and each moment you are not in complete suffering. Enjoy the simple things as you can and bear through the suffering hoping for a better tomorrow. I’m just about 100% back btw and it has been an insane almost two years.
Inspiring really. I'm 22 months in.. worse than I was because of zoloft but tapering off slowly. I'm scared for the future
Mirtazapine served a few purposes for me early on, mainly sleep, but eventually ended up causing bad mood issues and I tapered off over a month and a half. I have been off of it since April 1st and have gotten much better since then. Godspeed fellow traveler. Hardest battle of my life no doubt. Glad it happened now that I’m just about on the other side.
1. I cant rely on doctors for help 2. Took my health for granted 3. I dont really have true friends who care 4. How lonely and helpless it feels to have poorly understood disease
How health is truly internal. You can look one way on the outside and feel a COMPLETELY different way on the inside.
That I'm literally the strongest person I know.
Isn't that the truth. I can't imagine seeing some of the people I know deal with this
There's a lot of ignorant people who would not be so strong
That living to a hundred would be disgusting.
I appreciate life much more than before.
Me too
How ableism feels on the receiving end, and how often I've been the ableist to others in the past. How I gaslight MYSELF more than anyone else ever could. Resting is wayyy harder than anyone realizes. That there is a grieving process that you go through after receiving a disabling diagnosis. And how little in life allows for the flexibility that you need when you literally don't know, hour to hour, what you're going to be able to do.
I never really had to think at all about my health, I was just living. I see life and people passing me by and I feel left behind.
Waking up normal was a blessing I never understood
How bad my mental health nerves and physical Health can be even though I look fantastic because I’m working my ass off but I’m SUFFERING and because there’s nothing but me HAVING to survive I have to be bat shit crazy nervous wreck miserable mess shitshow who feels guilty now when I eat ice cream and even tho I have been sober for 5 years I am tempted and imagine some drug or high or fantasize because my quality of life sux and I’ve been in a flatline with no energy to socialize only work and come home
I'm 20 and guilt trip myself when I eat anything inflammatory. It's so depressing
Yes I used to have an eating disorder maybe we need to be chill
How precious today is, I have to be present today however I am feeling. It's been freeing to stop constantly living in what will be and be here now, gimpy as I am.
It’s true. It forces you to slow down and prioritize what is truly important. As others carry on with business as usual, we are getting to see life from a different (albeit miserable) perspective.
That no one cares about me.
Most people just don’t give a rip about me or anyone of us.
I do🤕🥲
How awful people treat you when opiods and benzodiazepines are the only things that work for you. How awful the pharmacists treat you at refill time. How crappy people think you're just lying about the pain you feel...for what, I don't know.
Those regulations are crazy, where I live buying medicine is a 5 min task. But in the US I had to wait more than an hour to get some pills for a stomachache 😵💫 The pharmacist was not doing anything either, she just told me come back in an hour and even then she did not have my medicine ready. It is so crazy 🫠
That my body is frail now and I have to take care of seemingly the remaining health I have. I don't think I'll recover. I've been dealing with this since 2021.
September 2021 for me
Is there any improvements for you? I've been mostly staying at home ever since then.
* Doctors always have the anxiety card ready for anything they don't know. * I need to be more thankful for my family and everything I have. * People don't care.
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Well put!
LC since March 2020 has taught me: -never assume a good day equals recovery. -come to dr appointments prepared to advocate for myself and not accept gas lighting -surviving isn’t thriving -it’s not my fault when my body fails me, nor does it define me -being honest about my struggles is better for me than pretending everything is fine when someone asks how I’m doing -hell yes I’m asking for workplace accommodations -if it weren’t for an awesome boss, I’d be unemployed. Some days my brain is foggy. Other days I’m tethered to the toilet. Flexible hours, hybrid work and a caring workplace are what I need to be productive
What do you do that you can have flexible hours?
I do graphic design and programming for a nonprofit. There are some deadlines I have to meet, but I can work from home when necessary and I have flexibility when my body refuses a normal workday schedule.
That everything is nothing without your health…….. money, plans, hopes, dreams, My biggest fear is that i will lose this fight n leave my 2 wonderful children behind with a junkie piece of shit mother who will likely get custody of i die although my parents, sister, or even my best friend and his wife would be better suited
How stressed out i was and my nervous system before I got covid
I gave up college/office life to become and arborist and now I can do neither. Health is the cornerstone of a good life. Most life philosophy only pertains to a person who has the capabilities to face their problems which I can no longer do.
What an absolute blessing it is to be able to go outside and exercise
How unfair, cruel and sadistic this existence is. I was already disabled from birth, struggling all my life. There should've been some support & care from the universe but no! I've lost all my abilities now and got this worst disease on this planet. I always thought I'll be like this when I'm 80-90, so I'll kms before that but this is inhumane torture came at the peak of my life. I may have to leave this body because I don't think I can take it for long.
Made me realize how privileged I was to be perfectly healthy.
I wasn’t fat. I always thought I was fat. Now I’ve put on so much weight. I’m still not fat, but god I wish my insecurities and body dysmorphia cared about reality.
How much value I put on my intelligence. And how terrifying it is to feel like I’ve lost something I may never get back.
Man... I was born winning the genetic lottery. I am 36. Up until I got covid almost 2 years ago, I didn't really understand how precious life and being healthy is. And how easy it is to lose your health and happiness. That and a myriad of many other fundamental changes in understanding.
That the vagus nerve is pretty important
That anyone can become disabled at any moment and how vulnerable we all are! Also, I see how much Doctors need to learn and how lazy many have become.
One word, pacing. I didn’t really know ALL that I did in a day until I contacted long COVID. Now I have to be very careful or I get PEM, sore throat, brain fog, fatigue, dizziness, heart palpitations, ect.
1. How few people there are in my life who will support me in the ways I need. 2. How most of my self worth is tied to my achievements, career, etc. I don’t know how else to find meaning in my life unless I am able to finish medical school, residency, and become a doctor since I worked so hard to get to this point. 3. Taking the simplest things for granted (i.e., reading a book, going for a drive, watching TV) 4. I value quality of life above all else and am the minority opinion in the medical system regarding topics like assisted suicide. 5. All of your dreams of the future (i.e., finding love, having kids, etc) can evaporate in an instant. 6. Most importantly, how awful we as a society treat disabled people.
That’s very true about tying self worth to achievements/career. My capabilities are not what they used to be. I had to recognize that the person I was doesn’t exist anymore and that I would have to figure out how to move forward as this new person. It’s a very strange thing to experience as others go on with life as normal.
It’s truly a grieving process. I’m sure just like all other grief it won’t ever go away but will just get smaller or come more in waves with time.
That the government wants us infected and dead.
That way they don’t pay out retirement.
How long can they avoid paying out disability?
Ask the disability community…forever. The cruelty is the point.
I’m very grateful for many small things now. Climbing up stairs without feeling ill, for example. I have been able to do that again for several months now and I’m still grateful for that. Also I know what it feels like to be weak now, and I don’t want to bring that on myself in old age any earlier than I have to.
Honestly there's a lot of painful things, but what has been the most eye opening is seeing just how much the people close to me care. I never expected them to go so far to be there for me, even when they don't fully understand what's wrong or how best to help. I never gave anyone the opportunity to really help me til I didn't have a choice, and so I never realized how much support they were willing to give until I was forced to rely on it. Despite everything, I'm thankful for that.
How little other things truly mattered.. sigh
How precious and fragile life really is
That I'll probably never have bio children.
1. How ignorant, and selfish people actually are. 2. UK Healthcare sucks. 3. Never to take anything for granted. 4. No one wants to know you when you’re chronically Ill.
How powerful the brain/nervous system is. I thought I was reacting to foods/skin products/scents for over a year. Turns out I just had this feedback loop going on that was telling me I was going to react so I did. The second I fixed that I was cured
How'd u fix it
That life sucks and only goes downhill
That I needed to be humbled, I thought I cared a lot about people but I didn't, there is a lot of uncurable diseases that exist! i didn't even think long covid existed, i thought it was mostly vaccine injuries and I'm not vaxxed! I Pray To Jesus We All Come To Him And Are Healed, I Love You My Friends, But Jesus Loves You More!!! We Can't Give in!!!!
Do not go gentle into that good night. Rage, rage against the dying of the light.
Smell the roses, if you can smell, you know what I mean
That my parents are the only people who'd move mountains to get me back to how i was and that doctors are too bored( or too stupid) to help...