1. < Post-COVID Recovery & COVID-19

Having long COVID, how is your mental health?

Posted by mbryant1380 @mbryant1380, Nov 6 8:32am

Hi everyone,
I have posted on here several times and find this a comforting and safe space. On here most conversations are about physical issues/symptoms, and sharing experiences, treatments, articles etc. and people will add on about how this illness/condition has weighed on them mentally and emotionally as well.
I am STILL finding it a struggle to mentally and emotionally cope and navigate through on a daily basis. I try and take on the sentiment of “it could be worse” or “be grateful you woke up this morning”. And I know all of those statements are true, everyday I try and humble myself into a mental space of gratitude and appreciation, but it is sooo difficult most days. My daughter tells me “small things mommy you have to celebrate”. Things like that she will tell me to keep my spirits up. For me it’s the symptoms that strain my mental and emotional state. I’m sure a lot of you can relate to having multiple symptoms and feeling like the symptoms are winning at times. And maybe not getting much help from the medical community from either tests not giving answers, treatment(s) not effective and/or being dismissed, not believed and unsupported.
How are you all able to live by those sentiments? When you wake up in pain with not much relief day after day, week after week, months and years after another, what gets you through? I know there are people going through much worse, that’s not even Covid related. But should what we are going through be invalidated because we “woke up this morning” or “it could be worse”? And please forgive me if I’m being a Debbie downer, because this should be a place for uplifting and giving positivity to each other. I think the frustration is getting to me after going through this for the last three years. Trying to hold on to hope and faith that things will get better is such a back and forth battle for me.
So I’m basically looking for inspiration and feedback on what mentally gets you through? What drives your hope and faith? Maybe this conversation will help others find some perspective and light as well.
Thank You ☺️

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

jeindc | @jeindc | Dec 6 2:15pm

I had Non-Hodgkin Lymphoma and was treated with radiation. Yes, it was a 'walk in the park' compared to this post COVID stuff. Depression is present often - I try to work through it. Like others I've seen so many docs - more than combined in my 77.5 years of life!

Today is a very bad day. My hearing, which was fine til I got COVID the end of March/start of April 2023 and seems to worsen with time; the other symptoms (leg rash that persists, mouth 'blisters', tinnitus and musical hallucinations about which a non-ENT told me they were called; the ENT didn't; exhaustion) all seem to be at a "let's make her crazy" pitch today. I'm trying to work - yes, I still try to! - and finding today a challenge.

I read all I can by using a google alert for "long COVID" and it's still a mystery. All I've seen that's positive so far is that young people seem to have lessened or no long COVID after 2 years. I so hope for them it's that.

Where are the doctors in more than at Mayo who care to know more? I went to the one "long COVID specialist" in the major metropolitan area in which I lived that is also affiliated w/ a teaching hospital. He made a decision about me and took only one symptom into consideration and then checked out of involvement with me.

So here we are trying to help each other when what an opportunity those who do research have!

To us .. to Quality of Life -- even for a few hours.

JE

REPLY
2 replies
misslauren | @misslauren | Dec 7 8:44am
In reply to @jeindc "I had Non-Hodgkin Lymphoma and was treated with radiation. Yes, it was a 'walk in the..." + (show)
@jeindc

I had Non-Hodgkin Lymphoma and was treated with radiation. Yes, it was a 'walk in the park' compared to this post COVID stuff. Depression is present often - I try to work through it. Like others I've seen so many docs - more than combined in my 77.5 years of life!

Today is a very bad day. My hearing, which was fine til I got COVID the end of March/start of April 2023 and seems to worsen with time; the other symptoms (leg rash that persists, mouth 'blisters', tinnitus and musical hallucinations about which a non-ENT told me they were called; the ENT didn't; exhaustion) all seem to be at a "let's make her crazy" pitch today. I'm trying to work - yes, I still try to! - and finding today a challenge.

I read all I can by using a google alert for "long COVID" and it's still a mystery. All I've seen that's positive so far is that young people seem to have lessened or no long COVID after 2 years. I so hope for them it's that.

Where are the doctors in more than at Mayo who care to know more? I went to the one "long COVID specialist" in the major metropolitan area in which I lived that is also affiliated w/ a teaching hospital. He made a decision about me and took only one symptom into consideration and then checked out of involvement with me.

So here we are trying to help each other when what an opportunity those who do research have!

To us .. to Quality of Life -- even for a few hours.

JE

Jump to this post

Every day is a struggle for me . I know it will be the same as yesterday and the day before that. The same for the last 2 years. If I could feel normal for just 30 minutes a day it would give some hope that maybe things will get better. This is an evil virus. It ruins every part of me.

REPLY
2 replies
dloos | @dloos | Dec 7 9:47am
In reply to @misslauren "Every day is a struggle for me . I know it will be the same as..." + (show)
@misslauren

Every day is a struggle for me . I know it will be the same as yesterday and the day before that. The same for the last 2 years. If I could feel normal for just 30 minutes a day it would give some hope that maybe things will get better. This is an evil virus. It ruins every part of me.

Jump to this post

I have been stuck in”groundhog’s day” for almost three years. Going to doctors, and specialists appointments, but no one can do anything.
It has ruined my life too. Three years lost, gone. I’m alive, but not living.

REPLY
azlynn5 | @azlynn5 | Dec 7 12:05pm

I’m so sorry that you are struggling. I have a lot of empathy for you. So far my journey has been shorter than yours(6 months), but that feeling of being stuck in a fog, exhausted, with a lot of physical issues is overwhelming. Initially I was told to just go home and wait it out as there is no cure. Finally after a lot of pushing I was referred to an integrated medicine doctor, who had very helpful advice on supplements, acupuncture, and massage therapy. For me I saw immediate improvement in physical symptoms after the initial acupuncture treatment. I was very skeptical initially, but I have felt a little bit better each time. I have had 5 sessions. And the supplements helped make some improvement in sleep and GI issues. With the improvement of my physical symptoms, my mental health has improved too. They are so interconnected. I now feel “functional” after 6 months. I don’t feel great, but can manage daily activities and can feel joy again. I am hoping that I will continue to improve and get back to my old self. I wish the best to you in your healing journey.

REPLY
1 reply
shashig | @shashig | Dec 7 12:08pm

Hi M...I don't think you're a Debbie Downer. You're a realist. You're honest. While it's easier for those who love us if we maintain a positive attitude (Monty Python: "Always look on the bright side of life" -- but we know what the next verse is LOL!!!). And, for sure, it's healthier for us, too. But I think we've got to give our anger, frustration, sadness, and confusion some room, too. No, not dwell. But definitely acknowledge and, as they say, embrace. Journaling it out can help. It does for me. Screaming into or beating up a pillow. Making myself cry to a trigger sad song. Watching a horror film like "Carrie" where I get my vicarious revenge on the world. Sick humor is good. If you find outlets for these feelings -- too often labeled negative -- I believe they lose some of their punch and you can more easily deal...it's keeping them in that makes it worse. Just my opinion. Sending hugs on a Saturday. (Oh, and yeah, the holiday season, with its forced, prolonged jollity is the worst. Factor that in! ; )

REPLY
2 replies
friedrich | @friedrich | Dec 7 12:17pm
In reply to @shashig "Hi M...I don't think you're a Debbie Downer. You're a realist. You're honest. While it's easier..." + (show)
@shashig

Hi M...I don't think you're a Debbie Downer. You're a realist. You're honest. While it's easier for those who love us if we maintain a positive attitude (Monty Python: "Always look on the bright side of life" -- but we know what the next verse is LOL!!!). And, for sure, it's healthier for us, too. But I think we've got to give our anger, frustration, sadness, and confusion some room, too. No, not dwell. But definitely acknowledge and, as they say, embrace. Journaling it out can help. It does for me. Screaming into or beating up a pillow. Making myself cry to a trigger sad song. Watching a horror film like "Carrie" where I get my vicarious revenge on the world. Sick humor is good. If you find outlets for these feelings -- too often labeled negative -- I believe they lose some of their punch and you can more easily deal...it's keeping them in that makes it worse. Just my opinion. Sending hugs on a Saturday. (Oh, and yeah, the holiday season, with its forced, prolonged jollity is the worst. Factor that in! ; )

Jump to this post

To shashig —

Thank you for your insightful and articulate commentary on balanced ways to express both negative and positive feelings about one’s LC.

— friedrich

REPLY
shashig | @shashig | Dec 7 12:19pm
In reply to @jeindc "I had Non-Hodgkin Lymphoma and was treated with radiation. Yes, it was a 'walk in the..." + (show)
@jeindc

I had Non-Hodgkin Lymphoma and was treated with radiation. Yes, it was a 'walk in the park' compared to this post COVID stuff. Depression is present often - I try to work through it. Like others I've seen so many docs - more than combined in my 77.5 years of life!

Today is a very bad day. My hearing, which was fine til I got COVID the end of March/start of April 2023 and seems to worsen with time; the other symptoms (leg rash that persists, mouth 'blisters', tinnitus and musical hallucinations about which a non-ENT told me they were called; the ENT didn't; exhaustion) all seem to be at a "let's make her crazy" pitch today. I'm trying to work - yes, I still try to! - and finding today a challenge.

I read all I can by using a google alert for "long COVID" and it's still a mystery. All I've seen that's positive so far is that young people seem to have lessened or no long COVID after 2 years. I so hope for them it's that.

Where are the doctors in more than at Mayo who care to know more? I went to the one "long COVID specialist" in the major metropolitan area in which I lived that is also affiliated w/ a teaching hospital. He made a decision about me and took only one symptom into consideration and then checked out of involvement with me.

So here we are trying to help each other when what an opportunity those who do research have!

To us .. to Quality of Life -- even for a few hours.

JE

Jump to this post

Hi JE, Agree with everything you express, as I'm sure most/all of us do. For me, this group (and the FB group) help enormously. Knowing I'm not alone, getting validation about all kinds of stuff -- including docs who either truly don't know or, sadly, sometimes don't truly care -- and hearing about different, sometimes alternative therapies. If someone says a supplement really helped, I'll hurry over to Amazon. I mean, why not? It's maybe $20? After reading azlynn5's results, think I'll sign up for sessions at a local acupuncture school (I'm in NYC, so quality is great, cost reasonable,students well supervised)...the message being: let's learn from each other and try everything (within reason). Sending hugs.

REPLY
1 reply
mbryant1380 | @mbryant1380 | Dec 7 1:03pm
In reply to @azlynn5 "I’m so sorry that you are struggling. I have a lot of empathy for you. So..." + (show)
@azlynn5

I’m so sorry that you are struggling. I have a lot of empathy for you. So far my journey has been shorter than yours(6 months), but that feeling of being stuck in a fog, exhausted, with a lot of physical issues is overwhelming. Initially I was told to just go home and wait it out as there is no cure. Finally after a lot of pushing I was referred to an integrated medicine doctor, who had very helpful advice on supplements, acupuncture, and massage therapy. For me I saw immediate improvement in physical symptoms after the initial acupuncture treatment. I was very skeptical initially, but I have felt a little bit better each time. I have had 5 sessions. And the supplements helped make some improvement in sleep and GI issues. With the improvement of my physical symptoms, my mental health has improved too. They are so interconnected. I now feel “functional” after 6 months. I don’t feel great, but can manage daily activities and can feel joy again. I am hoping that I will continue to improve and get back to my old self. I wish the best to you in your healing journey.

Jump to this post

Thank you for sharing some suggestions on possible ways to improve what a lot of us are experiencing. I so happy that these things worked for you and has given you some hope of improvement and hopefully a full recovery. And the best thing, that joy has come back into your life!!
Wishing you continued healing and happiness!

REPLY
mbryant1380 | @mbryant1380 | Dec 7 1:20pm
In reply to @shashig "Hi M...I don't think you're a Debbie Downer. You're a realist. You're honest. While it's easier..." + (show)
@shashig

Hi M...I don't think you're a Debbie Downer. You're a realist. You're honest. While it's easier for those who love us if we maintain a positive attitude (Monty Python: "Always look on the bright side of life" -- but we know what the next verse is LOL!!!). And, for sure, it's healthier for us, too. But I think we've got to give our anger, frustration, sadness, and confusion some room, too. No, not dwell. But definitely acknowledge and, as they say, embrace. Journaling it out can help. It does for me. Screaming into or beating up a pillow. Making myself cry to a trigger sad song. Watching a horror film like "Carrie" where I get my vicarious revenge on the world. Sick humor is good. If you find outlets for these feelings -- too often labeled negative -- I believe they lose some of their punch and you can more easily deal...it's keeping them in that makes it worse. Just my opinion. Sending hugs on a Saturday. (Oh, and yeah, the holiday season, with its forced, prolonged jollity is the worst. Factor that in! ; )

Jump to this post

Thank you for saying that! I agree that as much as we as humans acknowledge and embrace our joys, happiness and good fortune, we should also acknowledge our frustration, anger, sadness and pain. Acknowledge it, feel it and move through it. As strange as it may sound I feel a little bit better after I cry, or let out a scream. I was also journaling at the start of all of this and haven’t in a while, think I’ll pick it up today.
At this point we do whatever we can do to get through, no matter how unconventional, strange or odd it may be to others. This community here, understands that.
Sending hugs right back to you! 😊

REPLY
1 reply
shashig | @shashig | Dec 7 2:57pm
In reply to @mbryant1380 "Thank you for saying that! I agree that as much as we as humans acknowledge and..." + (show)
@mbryant1380

Thank you for saying that! I agree that as much as we as humans acknowledge and embrace our joys, happiness and good fortune, we should also acknowledge our frustration, anger, sadness and pain. Acknowledge it, feel it and move through it. As strange as it may sound I feel a little bit better after I cry, or let out a scream. I was also journaling at the start of all of this and haven’t in a while, think I’ll pick it up today.
At this point we do whatever we can do to get through, no matter how unconventional, strange or odd it may be to others. This community here, understands that.
Sending hugs right back to you! 😊

Jump to this post

Sounding better, M...and sounding off, as you did, to a friendly, supportive, understanding, non-judging community helps a whole lot. I did caregiving for my honey, Jerry, for the three years before he died (stroke, then small cell lung cancer)...and, fortunately, found a national group called Well Spouse, which met monthly. The first two meetings, I said nothing. The third time, I finally blurted out my confession: "I yelled at Jerry. I was so mean! How could I? He's so sick!" and, to my shock, they began to laugh like crazy. "Of course, you did!" and "That's totally normal!" "We all do that"... and in a flash, my "sinful" behavior got normalized. It even became funny...so, yes, a community is, for most of us, I think, essential when you're going through alife challenge like LC. Or caregiving. Or anything, really.

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