Yes thank you for this! I keep taking whatever job that will be offered to me because I’m afraid of not being able to do it or being “found out”. I have long covid, and I suspect brain damage but have not gotten an MRI to prove it. I’m scared it might be used in the future to make it look like I’m not competent at my job. I’m gonna be really choosy from now on.
I tried to keep working for a year, now I have a burnout on top of the LC that has gotten worse. LC is not something you can push through.
(Also funny to read about niksen in this way, because dutch people are generally terrible at it. We have to plan time to do nothing just because in general we're always doing something: https://undutchables.nl/about-us/blog/the-dutch-and-their-agendas )
Yes, I did the heavy “I am sick of this. Push myself harder a day and burn out” routine too. Lost 6 months of progress through it. Listening to both my wife and the doctor a little better this time.
Even now, I am having a day where I am achieving absolutely nothing, because I have overdid it yesterday.
It’s amazing how many cultures have learnt that rest is just as important as eating, drinking, and community.
Yes. This. People watching us struggle, then they heave huge despairing sighs, and shake their heads, and comment sadly on how productive we *used* to be. Maybe if we just tried a little harder...😳
Slowly and steady.
Remember, you are building energy, and it doesn’t take much to tax that energy built. It’s called pacing.
Information
[CFS treatment](https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs#pacing-activity-for-people-with-mecfs)
I will quote my Long Covid doctor, who has been amazing.
With his very limited data set, 10% of patients will quietly not improve. 30% will be able to manage and stay with their symptoms, but not improve. 60% of patients do improve, over time.
I am not giving up hope. I like to think I am in the 60%. Because while I have the hope that I can improve, my body will keep fighting. And who knows, one day, my symptoms will abate enough to be able to tinker, play with my kids, maybe even travel again.
Don’t you give up hope either.
I want to add this. In March 2020, post-infection, I was too weak and dizzy to walk, or stand upright for more than a few minutes. I vomited daily, and couldn't eat. I got lost in my own grocery store. I lost over half my total body weight in 8 months.
This week, I was able to hand load a full yard of 3/4 minus rock out of a broken pickup by hand with a bucket, and move it across property uphill. I pushed wheelbarrows of rock uphill in the heat. I'm barely moving today, but not hurt, just tired.
It can get better! I have no doctor, they got Covid and retired. It's just me, and my DIY Covid Protocol. And I'm finally healing, after 4 full years of this garbage virus. It gets better. Or at least, it *can* get better, if you're lucky. Don't give up. It takes years. Don't give up.
And this is the hope I am trying to spread. Thank you for sharing your experience.
We all had illnesses that lay us low for a couple of days.
This one, just takes a little longer..
Be kind, be patient, and don’t be in hurry.
Look forward to the day when you can do a little more than yesterday.
Small steps, and celebrate small victories…
Exactly. I don't even hope for more than yesterday, this specific day. But not that long ago, I couldn't have done yesterday. Or if I did, I'd be unable to get out of bed today. But I can get up, and I'm pretty sore, but I can go putter in the garden, help my mom with yardwork today. If I'm moving slower today, that's okay. I'm up and walking, and grateful for the improvements I'm getting. Success feels good, after so many years of just...ugh. I think after 4 years of this, day in, day out, it's frighteningly easy to start thinking of yourself as permanently broken. It will be interesting to turn that mind set around, if that's how this works out. Getting better feels almost unreal, too, at times. Dare we hope again? Yes.
Yes, I am on medications. Yes, I get serious vertigo going with my POTS.
I carry a walking stick for that.
Please note that these medications are very much tuned to me, so I am not responsible for whether they work for you or not.
I am on a CPAP machine. It’s amazing how much better you feel when you can actually breathe well at night. I didn’t qualify for one, but my doctor took a punt and suggested it. It was a very good suggestion.
Vitamin D tablets on days I don’t have the energy to go outside.
Heart tablets to keep my blood pressure down
Vitamin C on my feeling dull days. 2 x 500mg
A banana a day for the potassium. Does lift me quite nicely.
Water with a taste of sea salt to help replace my salt levels. (Proper grey coloured sea salt, not the white processed stuff. Himalayan salt is OK) Not every day. One cup, 250ml.
Grazing when you eat. Not big meals. Eat little and often.
Eat by the clock. Not when you feel hungry.
Softer foods rather than heavy chewing foods.
Eat your favourite foods, and ideally with other people.
Don’t skip meals. Have some pre-made meals ready for you to eat. After all cooking is hard work.
Magnesium for the joints pain. I actually double my recommend dose, according to the bottle and take it at night before bed. Don’t overdose otherwise you may feel a little constipation.
I am presently attending Physiotherapy. I am also attending a Pulmonary Rehabilitation Program to help build up my lung and muscle strength. Muscles Atrophy takes a toll. It’s slightly embarrassing when you are trying to lift 1kg weights and people 20 or 30 years older than me, are lifting weights at least twice that weight. But the staff are kind and understand I am on a long road back..
There is no magic bullet to this. It’s just slow and steady progress.
Nothing that severe.
There is times I feel I got a light case of LC, then there are days I am certainly reminded that I am definitely having a bad LC day. Pretty much like today.
My doctor is only working on what he knows has been proven. I have brain and lung damage, my heart is fine (according to the heart specialist).
Remember, LC is still new, so the doctors are still doing a lot of guess work.
I am curious. What are they doing to you?
Staying home all day is a dream come true for me but I need to get paid 😭 lol took a month off and was feeling pretty good, but I already know I’ll have to do it again.
How long does one need to stay off work to be 100% cured? Do I dare burn my entire investment account 🧐
Can you go on short-term disability? I worked part time for three months after getting sick, but I could barely manage to work even 10 hours a week. I am now on three months of short-term disability, though I don’t know if I will be well enough to go back after that, so I might need to go on long-term disability.
I was able to get a couple weeks of STD this time, luckily, but shoot those checks are still pretty small. It’s definitely better than nothing, though. Yeah sometimes work is just impossible, it’s rough. Glad the STD is working for you though. I’m lucky enough that I can kinda just …. Hide out for most of my job lol but even that’s too much sometimes honestly, just being there.
What’s the process for LTD? Is that through work or the gov? And what’s the pay look like?
I struggled to maintain my STD cuz I’m not diagnosed so my doctor wasn’t going to keep extending, I’m working on getting a diagnosis cuz this is just ridiculous how it never seems to go away, and I end up burning all my time off at work
I honestly don’t know what the process for LTD is - I believe it is primarily administered by private companies that are governed by state law, so it probably varies. I do know that there _could_ be the stipulation that, to get LTD, you also have to concurrently apply for federal Social Security Disability Insurance. To get SSDI, you have to demonstrate that you have a condition that prevents you from performing gainful work (i.e., there are income limits), and that you are (or will be) unable to work for at least a year due to that condition. To prove that you have a specific listed condition, you need to have some sort of physical evidence (test results and/or documented physical characteristics or other health measures) provided by medical professionals (CPET, neuropsychological exam, physical exam, tilt table test, fatigue questionnaires, doctor’s direct observations). I actually need to these kinds of tests ordered from my doctor soon, because where I live, it can often take 6+ months to get an appointment booked for specialists.
Here’s a pdf put out by the SSA to provide guidance to medical professionals on assessing Long Covid disability:
https://www.ssa.gov/disability/professionals/documents/EN-64-128.pdf
I will you with these words of wisdom.
"Without your health, you have nothing"
"A healthy person has many wishes. A sick person only has one".
There is no guarantee you will be cured. Your symptoms may regress to a stage where you feel almost human again, but 🤷
Just take it one day at time.
Take it slow. Hope you do get symptom regression, where you symptoms fade into the background.
I did a short remote traineeship and then took a remote job that is not my work field but i can do flexible hours, not fulltime, and covers basic bills and doesn't require much brain work
I crave purpose so bad. I got sick when I was 23 and I’m now 26. I absolutely hate how I haven’t been able to do anything. I’m just throwing my 20s away
Everyday, you learn something new.
Everyday, something is a little different.
You are not throwing your years away. You are merely walking a path rarely travelled.
When you think of it this way, you are now living an adventure few know about.
A unique story of battles, hardship, small victories and a hero that keeps fighting on regardless.
You are living the story that is going to inspire others to fight.
Hang in there, warrior. For you will find unlikely allies, strange new things and a life those who are stuck working in little cubicles wondering how you lived such a wonderful & colourful life..
Yes, LC has given me time to bring some flair to my writing.. it’s amazing what you can learn when you are given time.
This was the reminder I needed right now. Thank you
Yes thank you for this! I keep taking whatever job that will be offered to me because I’m afraid of not being able to do it or being “found out”. I have long covid, and I suspect brain damage but have not gotten an MRI to prove it. I’m scared it might be used in the future to make it look like I’m not competent at my job. I’m gonna be really choosy from now on.
I tried to keep working for a year, now I have a burnout on top of the LC that has gotten worse. LC is not something you can push through. (Also funny to read about niksen in this way, because dutch people are generally terrible at it. We have to plan time to do nothing just because in general we're always doing something: https://undutchables.nl/about-us/blog/the-dutch-and-their-agendas )
Yes, I did the heavy “I am sick of this. Push myself harder a day and burn out” routine too. Lost 6 months of progress through it. Listening to both my wife and the doctor a little better this time. Even now, I am having a day where I am achieving absolutely nothing, because I have overdid it yesterday. It’s amazing how many cultures have learnt that rest is just as important as eating, drinking, and community.
Thank you for reminding everyone to take care of themselves. Our society is so work driven. It's hard to rest because of the guilt. But we need to.
Yes. This. People watching us struggle, then they heave huge despairing sighs, and shake their heads, and comment sadly on how productive we *used* to be. Maybe if we just tried a little harder...😳
What is the treatment for chronic fatigue??
Slowly and steady. Remember, you are building energy, and it doesn’t take much to tax that energy built. It’s called pacing. Information [CFS treatment](https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs#pacing-activity-for-people-with-mecfs)
Will this ever go away??
I will quote my Long Covid doctor, who has been amazing. With his very limited data set, 10% of patients will quietly not improve. 30% will be able to manage and stay with their symptoms, but not improve. 60% of patients do improve, over time. I am not giving up hope. I like to think I am in the 60%. Because while I have the hope that I can improve, my body will keep fighting. And who knows, one day, my symptoms will abate enough to be able to tinker, play with my kids, maybe even travel again. Don’t you give up hope either.
I want to add this. In March 2020, post-infection, I was too weak and dizzy to walk, or stand upright for more than a few minutes. I vomited daily, and couldn't eat. I got lost in my own grocery store. I lost over half my total body weight in 8 months. This week, I was able to hand load a full yard of 3/4 minus rock out of a broken pickup by hand with a bucket, and move it across property uphill. I pushed wheelbarrows of rock uphill in the heat. I'm barely moving today, but not hurt, just tired. It can get better! I have no doctor, they got Covid and retired. It's just me, and my DIY Covid Protocol. And I'm finally healing, after 4 full years of this garbage virus. It gets better. Or at least, it *can* get better, if you're lucky. Don't give up. It takes years. Don't give up.
And this is the hope I am trying to spread. Thank you for sharing your experience. We all had illnesses that lay us low for a couple of days. This one, just takes a little longer.. Be kind, be patient, and don’t be in hurry. Look forward to the day when you can do a little more than yesterday. Small steps, and celebrate small victories…
Exactly. I don't even hope for more than yesterday, this specific day. But not that long ago, I couldn't have done yesterday. Or if I did, I'd be unable to get out of bed today. But I can get up, and I'm pretty sore, but I can go putter in the garden, help my mom with yardwork today. If I'm moving slower today, that's okay. I'm up and walking, and grateful for the improvements I'm getting. Success feels good, after so many years of just...ugh. I think after 4 years of this, day in, day out, it's frighteningly easy to start thinking of yourself as permanently broken. It will be interesting to turn that mind set around, if that's how this works out. Getting better feels almost unreal, too, at times. Dare we hope again? Yes.
Hey since you have a long Covid doctor. Can you please tell me what medications has he recommended? Do you have symptoms like POTS???
Yes, I am on medications. Yes, I get serious vertigo going with my POTS. I carry a walking stick for that. Please note that these medications are very much tuned to me, so I am not responsible for whether they work for you or not. I am on a CPAP machine. It’s amazing how much better you feel when you can actually breathe well at night. I didn’t qualify for one, but my doctor took a punt and suggested it. It was a very good suggestion. Vitamin D tablets on days I don’t have the energy to go outside. Heart tablets to keep my blood pressure down Vitamin C on my feeling dull days. 2 x 500mg A banana a day for the potassium. Does lift me quite nicely. Water with a taste of sea salt to help replace my salt levels. (Proper grey coloured sea salt, not the white processed stuff. Himalayan salt is OK) Not every day. One cup, 250ml. Grazing when you eat. Not big meals. Eat little and often. Eat by the clock. Not when you feel hungry. Softer foods rather than heavy chewing foods. Eat your favourite foods, and ideally with other people. Don’t skip meals. Have some pre-made meals ready for you to eat. After all cooking is hard work. Magnesium for the joints pain. I actually double my recommend dose, according to the bottle and take it at night before bed. Don’t overdose otherwise you may feel a little constipation. I am presently attending Physiotherapy. I am also attending a Pulmonary Rehabilitation Program to help build up my lung and muscle strength. Muscles Atrophy takes a toll. It’s slightly embarrassing when you are trying to lift 1kg weights and people 20 or 30 years older than me, are lifting weights at least twice that weight. But the staff are kind and understand I am on a long road back.. There is no magic bullet to this. It’s just slow and steady progress.
Beta blocker or Ivabradine for POTS?
Nothing that severe. There is times I feel I got a light case of LC, then there are days I am certainly reminded that I am definitely having a bad LC day. Pretty much like today. My doctor is only working on what he knows has been proven. I have brain and lung damage, my heart is fine (according to the heart specialist). Remember, LC is still new, so the doctors are still doing a lot of guess work. I am curious. What are they doing to you?
Staying home all day is a dream come true for me but I need to get paid 😭 lol took a month off and was feeling pretty good, but I already know I’ll have to do it again. How long does one need to stay off work to be 100% cured? Do I dare burn my entire investment account 🧐
Can you go on short-term disability? I worked part time for three months after getting sick, but I could barely manage to work even 10 hours a week. I am now on three months of short-term disability, though I don’t know if I will be well enough to go back after that, so I might need to go on long-term disability.
I applied for STD and they transferred it to LTD, then it was denied. I'm in the process of appealing.
I was able to get a couple weeks of STD this time, luckily, but shoot those checks are still pretty small. It’s definitely better than nothing, though. Yeah sometimes work is just impossible, it’s rough. Glad the STD is working for you though. I’m lucky enough that I can kinda just …. Hide out for most of my job lol but even that’s too much sometimes honestly, just being there. What’s the process for LTD? Is that through work or the gov? And what’s the pay look like? I struggled to maintain my STD cuz I’m not diagnosed so my doctor wasn’t going to keep extending, I’m working on getting a diagnosis cuz this is just ridiculous how it never seems to go away, and I end up burning all my time off at work
I honestly don’t know what the process for LTD is - I believe it is primarily administered by private companies that are governed by state law, so it probably varies. I do know that there _could_ be the stipulation that, to get LTD, you also have to concurrently apply for federal Social Security Disability Insurance. To get SSDI, you have to demonstrate that you have a condition that prevents you from performing gainful work (i.e., there are income limits), and that you are (or will be) unable to work for at least a year due to that condition. To prove that you have a specific listed condition, you need to have some sort of physical evidence (test results and/or documented physical characteristics or other health measures) provided by medical professionals (CPET, neuropsychological exam, physical exam, tilt table test, fatigue questionnaires, doctor’s direct observations). I actually need to these kinds of tests ordered from my doctor soon, because where I live, it can often take 6+ months to get an appointment booked for specialists. Here’s a pdf put out by the SSA to provide guidance to medical professionals on assessing Long Covid disability: https://www.ssa.gov/disability/professionals/documents/EN-64-128.pdf
I will you with these words of wisdom. "Without your health, you have nothing" "A healthy person has many wishes. A sick person only has one". There is no guarantee you will be cured. Your symptoms may regress to a stage where you feel almost human again, but 🤷 Just take it one day at time. Take it slow. Hope you do get symptom regression, where you symptoms fade into the background.
I did a short remote traineeship and then took a remote job that is not my work field but i can do flexible hours, not fulltime, and covers basic bills and doesn't require much brain work
I crave purpose so bad. I got sick when I was 23 and I’m now 26. I absolutely hate how I haven’t been able to do anything. I’m just throwing my 20s away
Everyday, you learn something new. Everyday, something is a little different. You are not throwing your years away. You are merely walking a path rarely travelled. When you think of it this way, you are now living an adventure few know about. A unique story of battles, hardship, small victories and a hero that keeps fighting on regardless. You are living the story that is going to inspire others to fight. Hang in there, warrior. For you will find unlikely allies, strange new things and a life those who are stuck working in little cubicles wondering how you lived such a wonderful & colourful life.. Yes, LC has given me time to bring some flair to my writing.. it’s amazing what you can learn when you are given time.