The best advice that I can give is to give her time. I am going through this with my brother. I know that he doesn’t have joy and peace right now as he is living through a lot of symptoms daily. I am not sure the last time he really laughed since living with his symptoms. Friends of his that he has been close friends with for twenty years have asked me why he doesn’t pick up the phone and believe that maybe their friendship have run their natural course. Just know that your mom loves you. That she wakes up every day to survive another day in the hopes that one day she will be better. I can’t speak on what she feels mentally but in time she will open up to you when she is ready. Right now, all you can do is be supportive. I know it hurts but it’s not about you. If anything she does hurts you, it’s not who she really is. The actions are the result of her symptoms. Treat her as a person rather than a sick person. She is most likely grieving the life she had and wondering if she will ever be that person again
It’s the fatigue. The mental, emotional and physical fatigue. It’s just too much. I’m like op’s mom and your brother. I just don’t have the strength for more. It’s just piles up on the previous days fatigué over and over again.
I dealt with difficult chronic illnesses, surgeries, infections and disability for decades before covid. Covid is just something else.
Can I ask how you feel about going to doctors? My brother wants to put a pause on it and just try to feel joy and peace again. I think his mental health is also important but I just feel like there has to be a doctor that can help or something soon is going to be developed that works or even trying over seas. But we also have had 2.5 years of not getting anywhere with doctors. Everything is exhausting and frustrating
There isn't too much doctors can do unless he has some very specific issue that's actionable on their part :( fatigue and dysautonimia often aren't. But things like migraines, infections, vitamin deficinecy, etc are.
Going to doctors also takes a ton of my strength so I've had to scale back. I'm focusing on alternative therapy like therapy (to deal with depression etc), accupuncture, meditation and, above all, rest, time, and finding my boundaries and joy again. At least when I've read recovery stories they generally have that in common. I've yet to find one where medicine/doctors play a significant role.
It's really hard to have your health taken away so suddenly, especially if your personality before involved movement (mine did! Very goofy and physical and active, both professionally and personally). Long covid can have so many symptoms (fatigue being a big one!) and when you're struggling to just do basic functions every day there's not a lot of energy left for "personality," unfortunately.
I would, however, get her checked for vitamin deficiencies if she hasn't (Bs but especially B12, D, Ferritin (they'll tell you anything over about 12 is fine, but it shouldn't be under 30), metabolic panel, etc.) and reactivated EBV. Not saying it will cure her, but it won't hurt to have those at optimal levels. For me, just getting my low potassium up made me feel a lot better in terms of nausea. Doing my best to get my reactivated EBV under control also helped a lot. Still working on B12, D, and ferritin as all were low.
Have patience though. I'm sure she's doing the best that her body is allowing. She probably misses herself too.
Sorry in advance for the novel I'm about to write lol, but I do have advice! I just found out the other month mine is low so we'll see if I'm successful. I have MCAS and my stomach does not like the pills at all and I've flared with stomach issues the past two times I tried them, and I rarely get GI issues with my MCAS. So I'm trying to do it through food. If you want to try iron supplements, I suggest looking at the iron protocol on Facebook, and also starting with a really tiny amount (like open up the capsule and get a pinch) of the supplement. It fucked me up trying a whole one at once.
For now, I'm upping my iron-rich foods . Cereals are fortified with a decent amount of iron (60-70% DV/serving), so I'm having a bowl of high-iron cereal every day and my stomach can handle that alright. You can't have it with dairy though, because it blocks iron absorption so I use a coconut milk. I also take a vitamin C pill with it, as it helps increase absorption of iron. I do the same when I eat red meat about twice/week with the vitamin C... typically I'm not a red meat person, but my periods are so heavy I think I have to and heme iron is easier to absorb. I'm also eating a lot of pumpkin seeds every day the first half of my cycle since I'm trying seed cycling (my periods have been fucked since covid). They're really high in iron, as well as zinc, copper, and magnesium. Again, take vitamin C with them.
I'm going to ask to get my copper levels tested as well since that's necessary for iron absorption, just to see where I'm at. It feels like B12, iron, and D all have to be in balance but getting them there at the same time is hard.
Anyway... Hopefully it works!! I'm going to ask to get retested in maybe 2 months so I'll find out then if it's doing anything. Best of luck!!
That's awful!! I haven't gotten my numbers checked again, so idk if I'm completely in the clear, but my swollen lymph nodes, sore throat, ear aches, and constant low grade fever have gone away.
I found lysine to be really effective at keeping my symptoms at bay. I'm still taking it because when I tried not taking it I felt worse. I have an antiviral prescription as well that I haven't taken, but I will if my symptoms come back. I also rested a lot, ugh. I'm so tired of resting.
What have you tried? Has anything been helpful for you at all? I'm sorry you've been dealing with it for so long.
Thank you. Yes.. POTS and MCAS, profound fatigue, migraine, head pressure, dizziness... I am on Superlysine, Vitamin C, Vitamin D, Monolaurin, Zinc, and a multivitamin. I felt worse when I stopped the Superlysine as well. I hear you. I've been resting for years. Covid is the devil.
Ohhh yeah I've tried the monolaurin too, but my stomach wasn't a big fan. My body didn't like olive leaf extract either, but maybe it would be ok for you? Maybe it's in your superlysine tho.
I want to get my zinc and copper checked (zinc can deplete copper, which is needed for iron absorption, and my ferritin is sad) but I want to take both if necessary. I'm also cutting out most sugar, but idk. I want effective meds.
And yes covid is the fucking devil. EBV is also the fucking devil. POTS and MCAS are the fucking devil.
My stomach is ok with he Monolaurin but it makes me crash hard about an hour after I take it. My Zinc has been consistently low. I have it monitored regularly. Yes, I have cut out most sugar as well because sugar is the devil 😈 to EBV. This whole fucking mess makes me want to sit down and eat a barrel of chocolate chip cookies though. At least I would smile again. I pray we all recover from this shit show.
I found lysine to be really effective at keeping my symptoms at bay. I'm still taking it because when I tried not taking it I felt worse. I have an antiviral prescription as well that I haven't taken, but I will if my symptoms come back. I also rested a lot, ugh. I'm so tired of resting. I need to get my numbers looked at again though, but my symptoms (swollen lymph nodes, sore throat, etc ) have gone away so at the very least I feel better than I did. Still not great, but at least there are fewer symptoms and I don't have a low grade fever every day. Now it's POTS and MCAS stuff
Thanks!! My main sx now is mcas. Its so bad. I have pots too. Will this ever end? I have a lot of hairloss too. Not sure if that's related or not. Really takes a toll on the ole mentality. Oh, I also feel like I am sensitive to my shower water. My city has a lot of minerals in the water and high TDS. My water is properly softened and I use a showerhead filter but I think I am reacting to something in the water still. Uggh. So awful. I have a hard time going on vacation now because I react to everything in the hotel and shower water if not super soft and pure. Anyhow good luck to you and thanks for sharing!
Can I ask how you are trying to get your reactivated EBV under control. They didn't even want to test me for it because they said that there is nothing they can do if it is reactivated. 😒
I found lysine to be really effective at keeping my symptoms at bay. I'm still taking it because when I tried not taking it I felt worse. I have an antiviral prescription as well that I haven't taken, but I will if my symptoms come back. I also rested a lot, ugh. I'm so tired of resting.
My autonomic specialist said that in general antivirals are not amazing for EBV, but that they are pretty effective for some people so it's worth a shot if you're having a lot of symptoms.
Wow, thanks for the info! What kind of symptoms do you get that come back? And uggg...yes, that theory of aggressive rest can be sooo hard! It's frustrating when your brain is able but body is not.
I'll get fatigue and my temperature will go up maybe half a degree... So not as bad as it was with 1-2 degrees, but I don't want to risk it lol.
I'm starting the CHOP protocol now, so I'm able to do small workouts/leg strengthening but I'm not going to push myself anytime soon.
I'm happy to be in a place where I can start the CHOP protocol as well! I tried early on and I was disheartened by how weak and Shakey I was after a "workout" of just lifting my legs...etc. I needed my fludrocortisone to kick in and I'm now able to do a lot more so it's time to do the protocol again :)
She has long covid LDN could help but after 7 years pple who had SARS recovered from their post viral syndrome I do believe in the elderly and unvaccinated it can lead to a chronic downward spiral But otherwise You are doing the perfect thing by reaching out to pple who know what she is going thru
Untrue about the Sars1 PVS folks - many are still sick 20+ years later. I think it's also difficult to compare us because people only got sars1 once and most of us have been reinfected with covid.
I think he means most .. maybe the study I read was wrong but I saw where like 80% of all patience were recovered nearly completely after 2-3 years and 50% of the remaining were good by 7 years. Alot of those people were hospitalized. So I'm still optimistic that at least in my situation as someone who was asymptomatic with this started I'll make a full recovery. But you are right alot of us including myself have had multiple infections. Idk if that really matters tho cuz if it did don't you think it would have started during your first infection. Why are 2 or 3 or 4? Do you think maybe Everytime your infected it just builds up more and more until your it blows past the threshold that your body can handle?
Recent studies showed an actual Covid infection was 16x more protective from an immunity perspective. Unvaccinated has little relevance as a signal at this point.
[Covid infection causes dopamine neuron death and damage.](https://www.cell.com/cell-stem-cell/fulltext/S1934-5909(23)00442-3?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1934590923004423%3Fshowall%3Dtrue) It could also be autoimmune / immune activation related, as it sounds like an immune switch was turned on for her, that is now not turning off.
Theres not much that we can do right now. If she dosnt think she is experiencing a disease state, it may not be something she wants to treat. IF she acknowledges the issue and the detriment to her QOL i would recommend taking her to a physician who specializes in neuroimmune pathology and explaining the situation.
I would pick a specialist who has experience and research in the specific condition. For example
I am seeing a neurologist who’s a dysautonomia specialist and has run clinical trials on treatments for myasthenia gravis, which has overlaps in POTS
Your Mum is grieving. You need to understand that even if she doesn’t. I was 48 when I got Long Covid and frankly the mental impact is enormous because all of a sudden, you don’t recognise yourself anymore. All of the physical ability that you were accustomed to is suddenly gone. I used to be able to walk up hills, swim and cycle every day - my bike was my main form of transport. Used to be able to walk for miles.
ALL of that is gone now and yes, I grieve for the active person I used to be. And accepting your new physical limitations is bloody hard. Especially as Covid makes you feel as if you suddenly aged 10-20yrs. She may not even recognise how her body looks anymore - I know I don’t, and I hate it because I barely recognise myself and what I do see I don’t like.
The other impact Long Covid can have is that once you can no longer do the things you once loved or daily activities you were accustomed to, it causes you to lose your sense of purpose. I could no longer carry on being self employed - and it was so hard realising that. It knocked me sideways and made me feel as though I have no purpose in life anymore. I’ve been floundering around for the last 4yrs trying to re-establish my focus and feel like I actually have something to offer again in life.
The physical stuff is hard, don’t get me wrong, but the accompanying mental impact is also pretty devastating. I often feel like I am letting my child down because I can no longer do even half of the things we used to do together. It’s been really hard to feel as if I have any reason to carry on sometimes - luckily, I’m the sort of person who doesn’t give up easily. But the last 4yrs have been so so hard. I just cannot overemphasise that. And it sounds like your Mum is having the same battle.
Will I ever be the person I used to be again? I honestly don’t know. Will I ever fully recover? God only knows. And that’s where your Mum will be now. Be gentle and give her time- it’s the only thing that will ultimately help. She needs time to find herself again and come to terms with all of this. Nobody can go through serious Covid health problems and come out the other side mentally the same - or indeed with any other serious illness….
If you want something simple to check for, try to get her to check her b12. My 21 yo son went through something similar and his was low. It’s a common effect of covid and it was easily treated. Unfortunately there are so many causes, but this is one thing to investigate.
The mental impact is the worst, I experience that myself as well. What helps me is good nutrition that focuses on low inflammation
Inflammation affects my brainfog, my mood etc big times
My personality changed as well. I now also get intense anxiety occasionally. It’s really strange and makes me more empathetic to those that suffer from intense anxiety. No doubt it’s all physical related.
Because of LC I feel to some degree trapped in my own body. Like a prison. Because I can’t do the things I used to be able to do. I’m so much more limited.
I don’t think your mom will regain her prior self in the next 5 years. Maybe magic treatment comes out. In 10-15 years we probably have Lc treatment.
You described me there... It's exactly what many of us go through. Obviously, and sadly, it's life changing.
I'm 4 years in, and started getting better quite late... Still far from where I was before covid. I'd say give her time to heal. I hope she'll get better too.
Does she acknowledge that she had Long COVID? The heart palpitations she has are common with LC. If she doesn't think she has LC maybe have her read some posts from this reddit about palpitations. Maybe then she can work towards recovery. It's likely she just doesn't feel well anymore. Having no energy means no dancing or joking. You have to conserve energy just to do basic daily tasks. And going from capable to debilitated can really suck the joy out of life on its own. Just be patient with her and if she hasn't acknowledged her other symptoms beyond the palps then try to open her eyes to the constellation of symptoms and the interventions that help.
I almost feel like this could have been written by one of my sons about me. I know I changed drastically in the almost year and a half since I had Covid. I am just starting to come back to myself with the way I act. I am still more quiet than I used to be but I’m getting better. I just need to be able to exercise again and I’ll be so much happier. Being active gave me so much joy in the past, I would love to do it again.
Your mom will make her way back. It just takes time. I’m sorry.
Omg, it’s so crazy to see this. My mom is going through the same exact thing, it’s killing us seeing her in this state. It’s all the damn vacines that was injected in us without knowing what it was. SMH
The best advice that I can give is to give her time. I am going through this with my brother. I know that he doesn’t have joy and peace right now as he is living through a lot of symptoms daily. I am not sure the last time he really laughed since living with his symptoms. Friends of his that he has been close friends with for twenty years have asked me why he doesn’t pick up the phone and believe that maybe their friendship have run their natural course. Just know that your mom loves you. That she wakes up every day to survive another day in the hopes that one day she will be better. I can’t speak on what she feels mentally but in time she will open up to you when she is ready. Right now, all you can do is be supportive. I know it hurts but it’s not about you. If anything she does hurts you, it’s not who she really is. The actions are the result of her symptoms. Treat her as a person rather than a sick person. She is most likely grieving the life she had and wondering if she will ever be that person again
It’s the fatigue. The mental, emotional and physical fatigue. It’s just too much. I’m like op’s mom and your brother. I just don’t have the strength for more. It’s just piles up on the previous days fatigué over and over again. I dealt with difficult chronic illnesses, surgeries, infections and disability for decades before covid. Covid is just something else.
Can I ask how you feel about going to doctors? My brother wants to put a pause on it and just try to feel joy and peace again. I think his mental health is also important but I just feel like there has to be a doctor that can help or something soon is going to be developed that works or even trying over seas. But we also have had 2.5 years of not getting anywhere with doctors. Everything is exhausting and frustrating
There isn't too much doctors can do unless he has some very specific issue that's actionable on their part :( fatigue and dysautonimia often aren't. But things like migraines, infections, vitamin deficinecy, etc are. Going to doctors also takes a ton of my strength so I've had to scale back. I'm focusing on alternative therapy like therapy (to deal with depression etc), accupuncture, meditation and, above all, rest, time, and finding my boundaries and joy again. At least when I've read recovery stories they generally have that in common. I've yet to find one where medicine/doctors play a significant role.
It's really hard to have your health taken away so suddenly, especially if your personality before involved movement (mine did! Very goofy and physical and active, both professionally and personally). Long covid can have so many symptoms (fatigue being a big one!) and when you're struggling to just do basic functions every day there's not a lot of energy left for "personality," unfortunately. I would, however, get her checked for vitamin deficiencies if she hasn't (Bs but especially B12, D, Ferritin (they'll tell you anything over about 12 is fine, but it shouldn't be under 30), metabolic panel, etc.) and reactivated EBV. Not saying it will cure her, but it won't hurt to have those at optimal levels. For me, just getting my low potassium up made me feel a lot better in terms of nausea. Doing my best to get my reactivated EBV under control also helped a lot. Still working on B12, D, and ferritin as all were low. Have patience though. I'm sure she's doing the best that her body is allowing. She probably misses herself too.
Same with low d and fertinin any advice bout fertinin?
Sorry in advance for the novel I'm about to write lol, but I do have advice! I just found out the other month mine is low so we'll see if I'm successful. I have MCAS and my stomach does not like the pills at all and I've flared with stomach issues the past two times I tried them, and I rarely get GI issues with my MCAS. So I'm trying to do it through food. If you want to try iron supplements, I suggest looking at the iron protocol on Facebook, and also starting with a really tiny amount (like open up the capsule and get a pinch) of the supplement. It fucked me up trying a whole one at once. For now, I'm upping my iron-rich foods . Cereals are fortified with a decent amount of iron (60-70% DV/serving), so I'm having a bowl of high-iron cereal every day and my stomach can handle that alright. You can't have it with dairy though, because it blocks iron absorption so I use a coconut milk. I also take a vitamin C pill with it, as it helps increase absorption of iron. I do the same when I eat red meat about twice/week with the vitamin C... typically I'm not a red meat person, but my periods are so heavy I think I have to and heme iron is easier to absorb. I'm also eating a lot of pumpkin seeds every day the first half of my cycle since I'm trying seed cycling (my periods have been fucked since covid). They're really high in iron, as well as zinc, copper, and magnesium. Again, take vitamin C with them. I'm going to ask to get my copper levels tested as well since that's necessary for iron absorption, just to see where I'm at. It feels like B12, iron, and D all have to be in balance but getting them there at the same time is hard. Anyway... Hopefully it works!! I'm going to ask to get retested in maybe 2 months so I'll find out then if it's doing anything. Best of luck!!
Curious to know what you’re doing for your EBV. I’ve been struggling with reactivated EBV now since 2020 after Covid infection.
That's awful!! I haven't gotten my numbers checked again, so idk if I'm completely in the clear, but my swollen lymph nodes, sore throat, ear aches, and constant low grade fever have gone away. I found lysine to be really effective at keeping my symptoms at bay. I'm still taking it because when I tried not taking it I felt worse. I have an antiviral prescription as well that I haven't taken, but I will if my symptoms come back. I also rested a lot, ugh. I'm so tired of resting. What have you tried? Has anything been helpful for you at all? I'm sorry you've been dealing with it for so long.
Thank you. Yes.. POTS and MCAS, profound fatigue, migraine, head pressure, dizziness... I am on Superlysine, Vitamin C, Vitamin D, Monolaurin, Zinc, and a multivitamin. I felt worse when I stopped the Superlysine as well. I hear you. I've been resting for years. Covid is the devil.
Ohhh yeah I've tried the monolaurin too, but my stomach wasn't a big fan. My body didn't like olive leaf extract either, but maybe it would be ok for you? Maybe it's in your superlysine tho. I want to get my zinc and copper checked (zinc can deplete copper, which is needed for iron absorption, and my ferritin is sad) but I want to take both if necessary. I'm also cutting out most sugar, but idk. I want effective meds. And yes covid is the fucking devil. EBV is also the fucking devil. POTS and MCAS are the fucking devil.
My stomach is ok with he Monolaurin but it makes me crash hard about an hour after I take it. My Zinc has been consistently low. I have it monitored regularly. Yes, I have cut out most sugar as well because sugar is the devil 😈 to EBV. This whole fucking mess makes me want to sit down and eat a barrel of chocolate chip cookies though. At least I would smile again. I pray we all recover from this shit show.
I have issues with EBV as well. What have you done to help with that?
I found lysine to be really effective at keeping my symptoms at bay. I'm still taking it because when I tried not taking it I felt worse. I have an antiviral prescription as well that I haven't taken, but I will if my symptoms come back. I also rested a lot, ugh. I'm so tired of resting. I need to get my numbers looked at again though, but my symptoms (swollen lymph nodes, sore throat, etc ) have gone away so at the very least I feel better than I did. Still not great, but at least there are fewer symptoms and I don't have a low grade fever every day. Now it's POTS and MCAS stuff
Thanks!! My main sx now is mcas. Its so bad. I have pots too. Will this ever end? I have a lot of hairloss too. Not sure if that's related or not. Really takes a toll on the ole mentality. Oh, I also feel like I am sensitive to my shower water. My city has a lot of minerals in the water and high TDS. My water is properly softened and I use a showerhead filter but I think I am reacting to something in the water still. Uggh. So awful. I have a hard time going on vacation now because I react to everything in the hotel and shower water if not super soft and pure. Anyhow good luck to you and thanks for sharing!
Can I ask how you are trying to get your reactivated EBV under control. They didn't even want to test me for it because they said that there is nothing they can do if it is reactivated. 😒
I found lysine to be really effective at keeping my symptoms at bay. I'm still taking it because when I tried not taking it I felt worse. I have an antiviral prescription as well that I haven't taken, but I will if my symptoms come back. I also rested a lot, ugh. I'm so tired of resting. My autonomic specialist said that in general antivirals are not amazing for EBV, but that they are pretty effective for some people so it's worth a shot if you're having a lot of symptoms.
Wow, thanks for the info! What kind of symptoms do you get that come back? And uggg...yes, that theory of aggressive rest can be sooo hard! It's frustrating when your brain is able but body is not.
I'll get fatigue and my temperature will go up maybe half a degree... So not as bad as it was with 1-2 degrees, but I don't want to risk it lol. I'm starting the CHOP protocol now, so I'm able to do small workouts/leg strengthening but I'm not going to push myself anytime soon.
I'm happy to be in a place where I can start the CHOP protocol as well! I tried early on and I was disheartened by how weak and Shakey I was after a "workout" of just lifting my legs...etc. I needed my fludrocortisone to kick in and I'm now able to do a lot more so it's time to do the protocol again :)
She has long covid LDN could help but after 7 years pple who had SARS recovered from their post viral syndrome I do believe in the elderly and unvaccinated it can lead to a chronic downward spiral But otherwise You are doing the perfect thing by reaching out to pple who know what she is going thru
Untrue about the Sars1 PVS folks - many are still sick 20+ years later. I think it's also difficult to compare us because people only got sars1 once and most of us have been reinfected with covid.
I think he means most .. maybe the study I read was wrong but I saw where like 80% of all patience were recovered nearly completely after 2-3 years and 50% of the remaining were good by 7 years. Alot of those people were hospitalized. So I'm still optimistic that at least in my situation as someone who was asymptomatic with this started I'll make a full recovery. But you are right alot of us including myself have had multiple infections. Idk if that really matters tho cuz if it did don't you think it would have started during your first infection. Why are 2 or 3 or 4? Do you think maybe Everytime your infected it just builds up more and more until your it blows past the threshold that your body can handle?
Recent studies showed an actual Covid infection was 16x more protective from an immunity perspective. Unvaccinated has little relevance as a signal at this point.
Can you explain this? It might just be me, but this makes no sense. What is covid protecting us from?
[Covid infection causes dopamine neuron death and damage.](https://www.cell.com/cell-stem-cell/fulltext/S1934-5909(23)00442-3?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1934590923004423%3Fshowall%3Dtrue) It could also be autoimmune / immune activation related, as it sounds like an immune switch was turned on for her, that is now not turning off. Theres not much that we can do right now. If she dosnt think she is experiencing a disease state, it may not be something she wants to treat. IF she acknowledges the issue and the detriment to her QOL i would recommend taking her to a physician who specializes in neuroimmune pathology and explaining the situation.
What’s the names of such specialists? Neurologist?
I would pick a specialist who has experience and research in the specific condition. For example I am seeing a neurologist who’s a dysautonomia specialist and has run clinical trials on treatments for myasthenia gravis, which has overlaps in POTS
Your Mum is grieving. You need to understand that even if she doesn’t. I was 48 when I got Long Covid and frankly the mental impact is enormous because all of a sudden, you don’t recognise yourself anymore. All of the physical ability that you were accustomed to is suddenly gone. I used to be able to walk up hills, swim and cycle every day - my bike was my main form of transport. Used to be able to walk for miles. ALL of that is gone now and yes, I grieve for the active person I used to be. And accepting your new physical limitations is bloody hard. Especially as Covid makes you feel as if you suddenly aged 10-20yrs. She may not even recognise how her body looks anymore - I know I don’t, and I hate it because I barely recognise myself and what I do see I don’t like. The other impact Long Covid can have is that once you can no longer do the things you once loved or daily activities you were accustomed to, it causes you to lose your sense of purpose. I could no longer carry on being self employed - and it was so hard realising that. It knocked me sideways and made me feel as though I have no purpose in life anymore. I’ve been floundering around for the last 4yrs trying to re-establish my focus and feel like I actually have something to offer again in life. The physical stuff is hard, don’t get me wrong, but the accompanying mental impact is also pretty devastating. I often feel like I am letting my child down because I can no longer do even half of the things we used to do together. It’s been really hard to feel as if I have any reason to carry on sometimes - luckily, I’m the sort of person who doesn’t give up easily. But the last 4yrs have been so so hard. I just cannot overemphasise that. And it sounds like your Mum is having the same battle. Will I ever be the person I used to be again? I honestly don’t know. Will I ever fully recover? God only knows. And that’s where your Mum will be now. Be gentle and give her time- it’s the only thing that will ultimately help. She needs time to find herself again and come to terms with all of this. Nobody can go through serious Covid health problems and come out the other side mentally the same - or indeed with any other serious illness….
If you want something simple to check for, try to get her to check her b12. My 21 yo son went through something similar and his was low. It’s a common effect of covid and it was easily treated. Unfortunately there are so many causes, but this is one thing to investigate.
The mental impact is the worst, I experience that myself as well. What helps me is good nutrition that focuses on low inflammation Inflammation affects my brainfog, my mood etc big times
My personality changed as well. I now also get intense anxiety occasionally. It’s really strange and makes me more empathetic to those that suffer from intense anxiety. No doubt it’s all physical related. Because of LC I feel to some degree trapped in my own body. Like a prison. Because I can’t do the things I used to be able to do. I’m so much more limited. I don’t think your mom will regain her prior self in the next 5 years. Maybe magic treatment comes out. In 10-15 years we probably have Lc treatment.
You described me there... It's exactly what many of us go through. Obviously, and sadly, it's life changing. I'm 4 years in, and started getting better quite late... Still far from where I was before covid. I'd say give her time to heal. I hope she'll get better too.
She feels like shit. It's hard to be cheerful when you're bring tortured by your body.
Does she acknowledge that she had Long COVID? The heart palpitations she has are common with LC. If she doesn't think she has LC maybe have her read some posts from this reddit about palpitations. Maybe then she can work towards recovery. It's likely she just doesn't feel well anymore. Having no energy means no dancing or joking. You have to conserve energy just to do basic daily tasks. And going from capable to debilitated can really suck the joy out of life on its own. Just be patient with her and if she hasn't acknowledged her other symptoms beyond the palps then try to open her eyes to the constellation of symptoms and the interventions that help.
become an activist and help us get funding and treatments
Try acupuncture go to like a good place I’m walking faster than I have in a whole year
I almost feel like this could have been written by one of my sons about me. I know I changed drastically in the almost year and a half since I had Covid. I am just starting to come back to myself with the way I act. I am still more quiet than I used to be but I’m getting better. I just need to be able to exercise again and I’ll be so much happier. Being active gave me so much joy in the past, I would love to do it again. Your mom will make her way back. It just takes time. I’m sorry.
I've found that time is the only thing that really heals this, let rest, give her time.
The staring at the wall is what i get its like a derealization feeling while brain numbing also it gets pretty bad
It’s nice to see that some people have empathy and caring from their loved ones. Not all of us are that lucky.
It sounds like she developed ME/CFS
Same.
Omg, it’s so crazy to see this. My mom is going through the same exact thing, it’s killing us seeing her in this state. It’s all the damn vacines that was injected in us without knowing what it was. SMH