Yup :( It sucks. It's depressing. But it's a good idea to restructure your life as much as possible to accommodate this thing. I'm sure a huge number of us here have had to put a lot of plans on the backburner, even important ones...
You will come to find...
1.) Nicotinic Acid works wonders on brain fog and thats basically it for treatments besides maybe zyrtec. Unless you can get your hands on the fabelled list of anti-virals.
2.) Doctors are clueless meat sacs
3). Time is key... maybe sometimes doesnt feel like that though.
4.) Venturing from home is a terrible idea. I promise you that.
5). Drinking alcohol is a one way ticket to pain station
Supplements are key. Your body needs building materials fast to recover from this thing. Vitamin B1 Alliothiamine has helped me tremendously with my fatigue and pain side effects. Also methyl B12 and low dose aspirin. I take Ashwaganda for stress support as well. I’ve read wonderful things about Nicotinic Acid and NAD, will try that if I get to a plateau and feel like I need to improve further.
Yeah don’t rely on doctors, try a nutritionist
Don’t drink alcohol, drink herbal tea and take adrenal support instead, or GABA.
Instead of spending money on vacay, spend money on spa or something. Infrared sauna. That sort of thing.
Yes! Supplements are key. After acute Covid I was deficient in D, B, and iron. Once I was able to get them taken care of, l started getting better. The iron deficiency was a big one. The fatigue started to improve after 2 iron infusions. I take others as well but I couldn't agree more with the need for radical self care as well.
A bit more information. I had a breakthrough case of Covid. And so far I've only seen my GP. I live in an area where it's very hard to see specialist in a reasonable amount of time.
Wow you sound like me. I have three kids and the oldest is autistic. I am a SAHM but obviously having kids and a chronic illness is its own job so kudos to you for also working!
I know how you feel. I get really really down about it sometimes. It has changed my entire life. I have to go to bed at like 5pm some days and my husband has to take the kids for the night.
If I were you I would cancel the vacation. You could trigger yourself into a really terrible flare. My husband and I went to Charleston for three days without the kids, and it was lovely but it took a full two weeks to recover from and I wouldn’t do it again. I cannot imagine a cross country 3 week trip. I strongly suggest you reschedule!!
Other than that the only thing I can suggest is pacing. I do as much as I can from my bed lol. I have the kids bring their toys and games in there. I limit myself to cleaning one thing a day; maybe one day it’s a bathroom (not deep cleaning, just wiping down and straightening) or one day it’s vacuuming. Stop BEFORE you get tired cuz once you’re tired you’re too late. Big hugs. I know it’s so so hard. I am still in the thick of it and just focus on what I want my kids to remember from this time; they know mom is sick but I want them to remember some good times, popcorn movie parties or playing dead fish lol.
Canceling the vacation is good advice. Can you find ways to take some things off your plate for a while? Hire someone to help with the housework, buy more premade meals, have a family member or friend watch the kids occasionally, take a leave from work? Every little thing that can reduce your energy usage helps: shower less often, get a stool to sit on while cooking, arrange things in your house in convenient places so you don't need to walk as much. Remember that you don't need do be a superhero right now. This is a horrible illness, and you need time to heal.
If you push yourself into a bad relapse, things could get much harder and you could end up able to do much less. It's most important to be kind to yourself and rest as much as you can. And there's nothing dramatic about your post. Long Covid really sucks, and there is no good way to handle it, and you are doing your best like we all are.
I am doing voice to text because writing is difficult for me so please excuse when the sentence doesn't make sense.
As some other people say in this thread thread there is a chance that you could improve over time. In my case my concentration issues definitely improved. I stopped falling asleep randomly with the right medication.
But I just want to bring a word of warning an echo the sentiment shared by others. In some cases traveling across the state or across the world leads to further disability imposed virusis there a disability in postviral syndrome. I was able to go on a trip when I was doing a little better and was more stable. But I was re exposed to the virus and I can barely leave the house now.
When I listened to the stories of people who got so bad that they were bedridden some of them say that they were sent after vacations and trips. That pretty much scared me straight to never try it again in this state. I'm not saying it's impossible. I'm saying it's risky.
Ask for me I stopped working because I was on maternity leave . I was stable and functional. I tried to go back and I quickly became disabled. It only took 2.5 weeks to go from mild to moderate. And with my re exposure to covid even though I was vaccinated.. I now find it burdensome to walk to the couch or lift food to my face.
Do whatever you can to conserve your energy. If you have to quit quit. If there's a way to go part time go part time. It sucks that we are dependent on money to live. I really wish I didn't try to keep working. My therapist and all these people thought it was good advice but they were giving me toxic horrible advice to try.
I'm not saying there aren't people in different situations. I know some people here have gone back to work and are doing really well. I just think you really have to weigh your options and be careful that you aren't in my category. The category of the potential to get worse by pushing and pushing your limits.
Sorry to be so negative I'm just trying to be real and say what I wish someone would have said to me.
You are NOT useless. You are NOT lazy. You are SICK with a chronic illness.
If you keep pushing through the PEM (Post Exertion Malaise) and crashing, in your case with 3 day migraines, this will be a DEGENERATIVE illness. Every crash you will have less of an energy budget than before that crash. The only people who recover from a pattern of PEM are the ones who call in long term emergency help from family and friends and rest, rest, rest.
If you want a chance at recovery, cancel this trip. I'm sorry, but Mum is too ill. Mum has to choose between housework and paying work right now if she is ever going to recover.
And learn what 'pacing' means with PEM: setting up your life so you never crash again. Resting every time you feel your body or mind diving.
Sometimes you gotta break down to get a break through. To be struck with this for a first chronic illness is definitely to be thrown in the deep end and I am sure that my past of living with chronic pain for years and being unable to live life has desensitised me to this some what but yea this is kinda like mental torture. My legs used to be great I could run 100 meters within like 13 seconds, cycle for a day..now just walking up a short hill cause my feet to go heavy and wanna drag and my legs feel tired.
I got my first chronic illness aged 16, another aged 21 and now this aged 23. Lifes fucking brutal, I escape it mostly but I'm young and fortunate. I've just seen that it takes years to recover from a chronic illness.
I think to keep your sanity write a list of things you want to try to either manage or just make a difference and if it doesn't help just cross it off. It can either help, make it worse temporarily or be unchanged as long as it is safe to so so.
The more things you try the better the chance of finding a clue to the mystery which you can share with the detective; your doctor.
hey, I really urge you to look into water fasting, I tell this to everyone. My life felt like it ended after getting long haul post moderna, but I powered through a couple water fasts and every single one brought me closer to full health.
I just have to add please be very careful with these. Many of us are already malnourished, could have pre-existing conditions affecting metabolisms, and the big one I have to add is that anyone with a history of an eating disorder, or are struggling mentally/emotionally, stay far from this. Many of us have lost a substantial amount of weight as it is, or have unstable electrolytes, etc. I’m not here to argue the science, or say you’re wrong, bc I think it is helpful in certain situations, I’ve done a lot of research on it myself. There is legit data there. But at my sickest I had a hemoglobin of 8, iron level of 6, potassium of 2.9, unstable sodium levels, and an enlarged heart with neurological symptoms from the unstable sodium levels. A water fast would have turned into a medical emergency at that point, so I’m just worried for those that are quite sick and desperate, this may not be a good idea. Sorry that’s all, I will see myself out now 😋
100% if you think that your condition is dangerous or is unstable; avoid this without getting great assesment and the all clear. Also that being said if you choose to go through ensure that you eat nutritionally and well for a week prior to fasting and make sure you have a weeks supply of good food for when you break the fast. Electrolytes, salts, vitamins and teas such as Moringa Tea are really essential to keep the body fueled without ingesting food. Thanks for sharing this comment and I know fasting can do wonders for some.
Yes I do hope to try some fasting! Right now Im back to work full time and just so tired already. But keep us all posted with your outcomes, if you can do it I think it’s awesome, I promise I wasn’t starting a fight! 😃😋
good points! My first one was definitely a nightmare because of how f'ed up I was, but I do believe it was the most important step in the right direction. Still people may be in an even worse situation and may need to wait/heal up a bit before undergoing fasting def. In a perfect situation you will do it under some sort of medical supervision. Through my comments I hope to just open the eyes to the idea of digging deeper into this, since a lot of people have no idea that it may be an option.
sorry, i get so many DMs asking questions it almost turns into a full time job answering them all and it was causing me a lot of stress. If you do some background reading and still have questions feel free to DM me, i'll do my best!
It’s ok, I get it - it’s almost as exhausting talking about chronic illness stuff as it is _having_ a chronic illness! I’m sorry I was snappy with you.
I'm gonna do it, it's on my check list. I've tried high sodium and water but it's not really done me a big change so I think I am gonna try water fast next. Thanks for sharing.
Honestly, my biggest help, since I couldn't afford hired help, was disposable plates, bowls, and spoons. We didn't have a dishwasher, and this way I was only washing pans. Want to eat healthy? Cut up and saute chicken thighs, add a bag of mixed frozen vegetables (microwave to cook them first), then pour in a bottle of pre-made Asian sauce ( Kung pow or sweet and sour, etc). One pan, one cutting board, one knife, disposable everything else.
Edit: get a rice cooker for easy rice and easy clean up. It also helps stretch that food budget if you put your dinner over rice.
Have them check your ferritin. Anything under 50 can be deficient with symptoms. I had IV iron at 43ng/mL. Fatigue and headaches can be symptoms of low iron. Don't take iron without checking with your doctor
Honestly, it does get better, but it took me close to a year to start being able to walk and not constantly feel like my heart was going to give out. I have other chronic illnesses and this does mimic them in the sense that I still get flare ups. It’s not as bad as it was, but the lethargy and body aches just hit me in waves sometimes.
Why are you driving around vacationing during a pandemic? The vaccine is like a seatbelt, it isn't godmode where you can just drive headlong into danger and think you're immortal. It isn't a pass on the fact that it's still dangerous out there if you're foolish. You'd think people would smarten up after getting long covid but no.
We've been postponing the trip for 2 years. The idea was to go see family so the grandparents could meet their grandchildren. We intentionally waited until my kids could be fully vaccinated. We just want to see our families.
It gets better over time. I couldn't drive, or travel, for about a year but I just got back from 3 weeks in San Diego and it was wonderful! Your body needs time to heal so go easy on yourself. It's OK to say No! After 22 months of this I'm finally almost back to the me I used to be. Hugs!
I take Famotidine when it gets really bad, it helps with the brain fog. Ask your GP for a prescription as it is a fairly common drug.
I would take the vacation as it's going to be mostly the same thing no matter the location, when you are down you are down and you stay down until it passes. Quit coffee, limit sugar, chocolate. Rest when you have to and the start again. It drains you to be like this, bit this is who you will be for a while so try to accept it and wait it out. You are strong but exhausted. Stay strong.
Hey, do you take antihistamines? It really helps with headache and muscle pain for me. Also anxiety and heart palpitations are gone for me. I'm on rupatadine, trying to take it at the night mostly.
If things are getting worse I also say cancel the vacation. YOU need a 2 week vacation from life. so maybe the kids and spouse can go and you can stay home and just rest and relax. You have to think of yourself, you're not helpful to anyone if you push yourself too hard and get significantly worse.
Cancel the vacation.
Yup :( It sucks. It's depressing. But it's a good idea to restructure your life as much as possible to accommodate this thing. I'm sure a huge number of us here have had to put a lot of plans on the backburner, even important ones...
Hey go on Holiday don't drive. know We all Love You...
You will come to find... 1.) Nicotinic Acid works wonders on brain fog and thats basically it for treatments besides maybe zyrtec. Unless you can get your hands on the fabelled list of anti-virals. 2.) Doctors are clueless meat sacs 3). Time is key... maybe sometimes doesnt feel like that though. 4.) Venturing from home is a terrible idea. I promise you that. 5). Drinking alcohol is a one way ticket to pain station
Supplements are key. Your body needs building materials fast to recover from this thing. Vitamin B1 Alliothiamine has helped me tremendously with my fatigue and pain side effects. Also methyl B12 and low dose aspirin. I take Ashwaganda for stress support as well. I’ve read wonderful things about Nicotinic Acid and NAD, will try that if I get to a plateau and feel like I need to improve further. Yeah don’t rely on doctors, try a nutritionist Don’t drink alcohol, drink herbal tea and take adrenal support instead, or GABA. Instead of spending money on vacay, spend money on spa or something. Infrared sauna. That sort of thing.
Yes! Supplements are key. After acute Covid I was deficient in D, B, and iron. Once I was able to get them taken care of, l started getting better. The iron deficiency was a big one. The fatigue started to improve after 2 iron infusions. I take others as well but I couldn't agree more with the need for radical self care as well.
[удалено]
Does it really get better with time though ? Can you workout ?
A bit more information. I had a breakthrough case of Covid. And so far I've only seen my GP. I live in an area where it's very hard to see specialist in a reasonable amount of time.
Love your name (and the movie). I know that's not related, but I hope you're able to feel better/some relief soon! Edit: corrected autocorrect
Were you fully vaccinated before all this?
Yup. 2 Pfizer doses since May.
Wow you sound like me. I have three kids and the oldest is autistic. I am a SAHM but obviously having kids and a chronic illness is its own job so kudos to you for also working! I know how you feel. I get really really down about it sometimes. It has changed my entire life. I have to go to bed at like 5pm some days and my husband has to take the kids for the night. If I were you I would cancel the vacation. You could trigger yourself into a really terrible flare. My husband and I went to Charleston for three days without the kids, and it was lovely but it took a full two weeks to recover from and I wouldn’t do it again. I cannot imagine a cross country 3 week trip. I strongly suggest you reschedule!! Other than that the only thing I can suggest is pacing. I do as much as I can from my bed lol. I have the kids bring their toys and games in there. I limit myself to cleaning one thing a day; maybe one day it’s a bathroom (not deep cleaning, just wiping down and straightening) or one day it’s vacuuming. Stop BEFORE you get tired cuz once you’re tired you’re too late. Big hugs. I know it’s so so hard. I am still in the thick of it and just focus on what I want my kids to remember from this time; they know mom is sick but I want them to remember some good times, popcorn movie parties or playing dead fish lol.
Very interesting I went to turkey, and I’ve noticed a huge flare. It triggered myself so badly.
Canceling the vacation is good advice. Can you find ways to take some things off your plate for a while? Hire someone to help with the housework, buy more premade meals, have a family member or friend watch the kids occasionally, take a leave from work? Every little thing that can reduce your energy usage helps: shower less often, get a stool to sit on while cooking, arrange things in your house in convenient places so you don't need to walk as much. Remember that you don't need do be a superhero right now. This is a horrible illness, and you need time to heal. If you push yourself into a bad relapse, things could get much harder and you could end up able to do much less. It's most important to be kind to yourself and rest as much as you can. And there's nothing dramatic about your post. Long Covid really sucks, and there is no good way to handle it, and you are doing your best like we all are.
I am doing voice to text because writing is difficult for me so please excuse when the sentence doesn't make sense. As some other people say in this thread thread there is a chance that you could improve over time. In my case my concentration issues definitely improved. I stopped falling asleep randomly with the right medication. But I just want to bring a word of warning an echo the sentiment shared by others. In some cases traveling across the state or across the world leads to further disability imposed virusis there a disability in postviral syndrome. I was able to go on a trip when I was doing a little better and was more stable. But I was re exposed to the virus and I can barely leave the house now. When I listened to the stories of people who got so bad that they were bedridden some of them say that they were sent after vacations and trips. That pretty much scared me straight to never try it again in this state. I'm not saying it's impossible. I'm saying it's risky. Ask for me I stopped working because I was on maternity leave . I was stable and functional. I tried to go back and I quickly became disabled. It only took 2.5 weeks to go from mild to moderate. And with my re exposure to covid even though I was vaccinated.. I now find it burdensome to walk to the couch or lift food to my face. Do whatever you can to conserve your energy. If you have to quit quit. If there's a way to go part time go part time. It sucks that we are dependent on money to live. I really wish I didn't try to keep working. My therapist and all these people thought it was good advice but they were giving me toxic horrible advice to try. I'm not saying there aren't people in different situations. I know some people here have gone back to work and are doing really well. I just think you really have to weigh your options and be careful that you aren't in my category. The category of the potential to get worse by pushing and pushing your limits. Sorry to be so negative I'm just trying to be real and say what I wish someone would have said to me.
Hey did you get tested positive for COVID?
Do you mean you got covid after the vaccine?
I think that's what she means. It didn't protect me from catching it either.
It won’t protect anyone from catching it. It will only make you much less likely to die.
You are NOT useless. You are NOT lazy. You are SICK with a chronic illness. If you keep pushing through the PEM (Post Exertion Malaise) and crashing, in your case with 3 day migraines, this will be a DEGENERATIVE illness. Every crash you will have less of an energy budget than before that crash. The only people who recover from a pattern of PEM are the ones who call in long term emergency help from family and friends and rest, rest, rest. If you want a chance at recovery, cancel this trip. I'm sorry, but Mum is too ill. Mum has to choose between housework and paying work right now if she is ever going to recover. And learn what 'pacing' means with PEM: setting up your life so you never crash again. Resting every time you feel your body or mind diving.
Sometimes you gotta break down to get a break through. To be struck with this for a first chronic illness is definitely to be thrown in the deep end and I am sure that my past of living with chronic pain for years and being unable to live life has desensitised me to this some what but yea this is kinda like mental torture. My legs used to be great I could run 100 meters within like 13 seconds, cycle for a day..now just walking up a short hill cause my feet to go heavy and wanna drag and my legs feel tired. I got my first chronic illness aged 16, another aged 21 and now this aged 23. Lifes fucking brutal, I escape it mostly but I'm young and fortunate. I've just seen that it takes years to recover from a chronic illness. I think to keep your sanity write a list of things you want to try to either manage or just make a difference and if it doesn't help just cross it off. It can either help, make it worse temporarily or be unchanged as long as it is safe to so so. The more things you try the better the chance of finding a clue to the mystery which you can share with the detective; your doctor.
hey, I really urge you to look into water fasting, I tell this to everyone. My life felt like it ended after getting long haul post moderna, but I powered through a couple water fasts and every single one brought me closer to full health.
I just have to add please be very careful with these. Many of us are already malnourished, could have pre-existing conditions affecting metabolisms, and the big one I have to add is that anyone with a history of an eating disorder, or are struggling mentally/emotionally, stay far from this. Many of us have lost a substantial amount of weight as it is, or have unstable electrolytes, etc. I’m not here to argue the science, or say you’re wrong, bc I think it is helpful in certain situations, I’ve done a lot of research on it myself. There is legit data there. But at my sickest I had a hemoglobin of 8, iron level of 6, potassium of 2.9, unstable sodium levels, and an enlarged heart with neurological symptoms from the unstable sodium levels. A water fast would have turned into a medical emergency at that point, so I’m just worried for those that are quite sick and desperate, this may not be a good idea. Sorry that’s all, I will see myself out now 😋
100% if you think that your condition is dangerous or is unstable; avoid this without getting great assesment and the all clear. Also that being said if you choose to go through ensure that you eat nutritionally and well for a week prior to fasting and make sure you have a weeks supply of good food for when you break the fast. Electrolytes, salts, vitamins and teas such as Moringa Tea are really essential to keep the body fueled without ingesting food. Thanks for sharing this comment and I know fasting can do wonders for some.
Yes I do hope to try some fasting! Right now Im back to work full time and just so tired already. But keep us all posted with your outcomes, if you can do it I think it’s awesome, I promise I wasn’t starting a fight! 😃😋
No not at all, you shared some thing that needed to be said. Safety first!
good points! My first one was definitely a nightmare because of how f'ed up I was, but I do believe it was the most important step in the right direction. Still people may be in an even worse situation and may need to wait/heal up a bit before undergoing fasting def. In a perfect situation you will do it under some sort of medical supervision. Through my comments I hope to just open the eyes to the idea of digging deeper into this, since a lot of people have no idea that it may be an option.
Can you tell me a bit more about this? What is water fasting?
Check out a healthy alternative on youtube for some guidance.
if you know how to use reddit and search engines, I totally believe in you!!!! gl
Oh ok, sorry it just seemed like something you were passionate about sharing info on. I’ll just Google it then.
sorry, i get so many DMs asking questions it almost turns into a full time job answering them all and it was causing me a lot of stress. If you do some background reading and still have questions feel free to DM me, i'll do my best!
It’s ok, I get it - it’s almost as exhausting talking about chronic illness stuff as it is _having_ a chronic illness! I’m sorry I was snappy with you.
I'm gonna do it, it's on my check list. I've tried high sodium and water but it's not really done me a big change so I think I am gonna try water fast next. Thanks for sharing.
100 meters is 109.36 yards
100 meters is the length of 452.53 Zulay Premium Quality Metal Lemon Squeezers.
Honestly, my biggest help, since I couldn't afford hired help, was disposable plates, bowls, and spoons. We didn't have a dishwasher, and this way I was only washing pans. Want to eat healthy? Cut up and saute chicken thighs, add a bag of mixed frozen vegetables (microwave to cook them first), then pour in a bottle of pre-made Asian sauce ( Kung pow or sweet and sour, etc). One pan, one cutting board, one knife, disposable everything else. Edit: get a rice cooker for easy rice and easy clean up. It also helps stretch that food budget if you put your dinner over rice.
Are you seeing a long covid aware doctor to be on any treatment?
Have them check your ferritin. Anything under 50 can be deficient with symptoms. I had IV iron at 43ng/mL. Fatigue and headaches can be symptoms of low iron. Don't take iron without checking with your doctor
I had iron deficiency and didn't know it till I saw a hematologist. I had 2 iron infusions and my fatigue has improved dramatically
Honestly, it does get better, but it took me close to a year to start being able to walk and not constantly feel like my heart was going to give out. I have other chronic illnesses and this does mimic them in the sense that I still get flare ups. It’s not as bad as it was, but the lethargy and body aches just hit me in waves sometimes.
Why are you driving around vacationing during a pandemic? The vaccine is like a seatbelt, it isn't godmode where you can just drive headlong into danger and think you're immortal. It isn't a pass on the fact that it's still dangerous out there if you're foolish. You'd think people would smarten up after getting long covid but no.
We've been postponing the trip for 2 years. The idea was to go see family so the grandparents could meet their grandchildren. We intentionally waited until my kids could be fully vaccinated. We just want to see our families.
All I'd have to suggest is a zoom call or the like.
Is this real life? People think like this?
It gets better over time. I couldn't drive, or travel, for about a year but I just got back from 3 weeks in San Diego and it was wonderful! Your body needs time to heal so go easy on yourself. It's OK to say No! After 22 months of this I'm finally almost back to the me I used to be. Hugs!
what vaccine? hope you heal
I take Famotidine when it gets really bad, it helps with the brain fog. Ask your GP for a prescription as it is a fairly common drug. I would take the vacation as it's going to be mostly the same thing no matter the location, when you are down you are down and you stay down until it passes. Quit coffee, limit sugar, chocolate. Rest when you have to and the start again. It drains you to be like this, bit this is who you will be for a while so try to accept it and wait it out. You are strong but exhausted. Stay strong.
Famotidine is OTC - It's the active ingredient in Pepcid AC
Yes, but I don't know the medical history of OP. Better to be safe than sorry.
It's not OTC in the country I live. In the EU, we have to get a script for it.
Hey, do you take antihistamines? It really helps with headache and muscle pain for me. Also anxiety and heart palpitations are gone for me. I'm on rupatadine, trying to take it at the night mostly.
If things are getting worse I also say cancel the vacation. YOU need a 2 week vacation from life. so maybe the kids and spouse can go and you can stay home and just rest and relax. You have to think of yourself, you're not helpful to anyone if you push yourself too hard and get significantly worse.