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.

law59 | @law59 | 1 day ago
In reply to @debbie75 "@mbryant1380 Thank you for the video and your encouraging words, I think this is so helpful..." + (show)
@debbie75

@mbryant1380
Thank you for the video and your encouraging words, I think this is so helpful day to day to know that I can still make a contribution to others when I most often feel useless and worthless as a result of all of the symptoms we go through. And thank you for the video, it was helpful and informative. Have you been to a pain rehab clinic like he talks about? If so, or if you know someone who has, was it helpful, did the benefits last, etc?
Wishing you peace and healing as well!

Jump to this post

Hi @debbie75. We are so lucky here to have your professional informed words and own long covid challenges. I too try to post here as a previous medical admin professional to help others and find the same difficulties with others not seeing and being able to believe the daily challenges and mental health obstacles it creates. So thank you for helping us and only the fastest and best possible recovery to you!🌈

REPLY
friedrich | @friedrich | 1 day ago
In reply to @mbryant1380 "It has been a long journey, I empathize with you and I’m sorry this has been..." + (show)
@mbryant1380

It has been a long journey, I empathize with you and I’m sorry this has been terrible one for you. I too have never seen so many different doctors in these three years than I have in my whole life! Most of my doctors have seem to really care, want and try and help. Most won’t directly say “yes Covid caused what you are experiencing” (except my LC doctor) they will say things like “it’s not Impossible but there’s still so much we don’t know about the illness and the aftermath of it” and they are trying to see if it’s something other than LC causing my symptoms/illness.
It’s heartbreaking to hear your husband has trouble believing and understanding what you’re experiencing. He must notice a change in you. Maybe share some of the post on here, (there are hundreds probably thousands) read our stories and there are a lot of articles and videos on LC. Having support and someone believe you can help. The thousands maybe millions of people going through this we all can’t be making this up or it’s all in our heads. Someone on another thread posted this one.


I absolutely love what you said, be kind to ourselves and love on ourselves, do the best we can. And would I say these things to a love one suffering? Oh I really love that! I'm going to screen shot that portion of your comment and read it every day (maybe even multiple times a day)! Thank you!!!! Your post was inspiring!
Wishing nothing but happiness and a complete healing for you!

Jump to this post

To mbryant1380:

Thank you for providing the link to the video by Dr. Sletten from the Mayo Pain Clinic. Dr. Sletten’s presentation is concise and well-organized. He speaks in a way that is articulate and engaging. He provides a framework that explains why we and our healthcare providers are so mystified by the symptoms we experience. And, why so many conventional approaches to treating those symptoms do not work.

Dr. Sletten also describes a new and different approach that has some success in treating our symptoms. He is realistic in describing the treatment as requiring time, effort, and patience on our part, and the coordinated use of different healthcare resources.

Dr. Sletten’s framework fits my experience of LC Post-Exertional Malaise (PEM). Also, the recommended “Pacing” approach to managing PEM, which works for me.

— Fred

REPLY
1 reply
mbryant1380 | @mbryant1380 | 22 hours ago
In reply to @debbie75 "@mbryant1380 Thank you for the video and your encouraging words, I think this is so helpful..." + (show)
@debbie75

@mbryant1380
Thank you for the video and your encouraging words, I think this is so helpful day to day to know that I can still make a contribution to others when I most often feel useless and worthless as a result of all of the symptoms we go through. And thank you for the video, it was helpful and informative. Have you been to a pain rehab clinic like he talks about? If so, or if you know someone who has, was it helpful, did the benefits last, etc?
Wishing you peace and healing as well!

Jump to this post

Hi,
Of course! Communities like this we have to help and hold each other up. Most of us aren’t getting it anywhere else.
No I have not, nor know anyone who has unfortunately. But his information makes sense, the fact that a lot of us are not getting answers from test or medical professionals. But what we are experiencing is real! Weather miscommunication with the brain and body and/or inflammation and overactive immune response that basically won’t shut down.
It was very informative for me.

REPLY
lkirnbauer | @lkirnbauer | 7 hours ago

I can feel you, especially today. I have been suffering for 2 years with no taste or smell. I keep being told it’s from Covid, but does anyone really know that for sure? My mind is like a sea saw, one day I’m positive and the next not so much! I have had 7 Stellate Ganglion Block injections that are suppose to bring my taste and smell back, but after 7, still nothing. I’m really loosing hope pretty quickly. I also never get hungry for food. Probably because I can’t smell. Nobody has really ever told me why that is. I guess I have to figure it out on my own. Sorry for the rant, but today is not a good day…

REPLY
1 reply
mbryant1380 | @mbryant1380 | 5 hours ago
In reply to @lkirnbauer "I can feel you, especially today. I have been suffering for 2 years with no taste..." + (show)
@lkirnbauer

I can feel you, especially today. I have been suffering for 2 years with no taste or smell. I keep being told it’s from Covid, but does anyone really know that for sure? My mind is like a sea saw, one day I’m positive and the next not so much! I have had 7 Stellate Ganglion Block injections that are suppose to bring my taste and smell back, but after 7, still nothing. I’m really loosing hope pretty quickly. I also never get hungry for food. Probably because I can’t smell. Nobody has really ever told me why that is. I guess I have to figure it out on my own. Sorry for the rant, but today is not a good day…

Jump to this post

Oh wow, I’m sorry that something that is not only a necessity (eating) but also one of life’s little enjoyments, being able to taste and smell is gone. And you like most of us are doing what we can to return back to some form of normalcy is just not working. My daughter also loss her taste and smell for over two years it’s starting to slowly come back, so hopefully that will happen for you. Also so sorry today is a bad day for you, and vent if you need to sometimes we need to just let it out. Talk about your frustrations maybe it will relieve you a little.
I hope you read @debbie75 comment on this thread, her words were very comforting.
Wishing you healthy happier days that make you smile more. And praying for a complete recovery.

REPLY
mbryant1380 | @mbryant1380 | 4 hours ago
In reply to @friedrich "To mbryant1380: Thank you for providing the link to the video by Dr. Sletten from the..." + (show)
@friedrich

To mbryant1380:

Thank you for providing the link to the video by Dr. Sletten from the Mayo Pain Clinic. Dr. Sletten’s presentation is concise and well-organized. He speaks in a way that is articulate and engaging. He provides a framework that explains why we and our healthcare providers are so mystified by the symptoms we experience. And, why so many conventional approaches to treating those symptoms do not work.

Dr. Sletten also describes a new and different approach that has some success in treating our symptoms. He is realistic in describing the treatment as requiring time, effort, and patience on our part, and the coordinated use of different healthcare resources.

Dr. Sletten’s framework fits my experience of LC Post-Exertional Malaise (PEM). Also, the recommended “Pacing” approach to managing PEM, which works for me.

— Fred

Jump to this post

You are very welcome. I really appreciate how Dr. Sletten’s explanations were very detailed, informative and yes very engaging. He really dissects these conditions and how they manifest in other parts of the body as well. And most importantly that these physical symptoms are real, not just “anxiety” like I was told a few times. No the symptoms are making us feel anxious, worried, stressed, depressed, frustrated and even fearful.
Yes pacing also works for me, I don’t experience PEM that bad but the joint and nerve pain, boy oh boy!
It seems like our condition is finally getting recognized, my LC doctor says a lot of grants are now being given towards more studies and trials. Let’s hope…

REPLY
View MoreView Less
Please sign in or register to post a reply.