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.

dloos | @dloos | Nov 7 9:43am

In reply to @mbryant1380 "I completely agree! It so easy for some people to say things like that who are..." + (show)

Thanks you and I send the same hopes for healing to you.

friedrich | @friedrich | Nov 7 9:57am

In reply to @kellysmail2016 "Hello fellow friends above, I just want to say that I was in tears when reading..." + (show)

@kellysmail2016

Hello fellow friends above,

I just want to say that I was in tears when reading the posts the 3 of you just posted.

I too feel exactly like you. I was having a bad day today and decided to work on my project that I have been doing slowly. This project involves trying to help long Covid patients be heard.

I know I’ve spoke to you before in chat in the past and I’m not sure if you remember me stating that I was asking questions and getting responses to forward to Social Security administration, different lawyers, that I know, my doctors, and others that help long Covid patients try to get the medical help they need.

I was having a bad day today, and thought this would make me feel a little better. I spend most of my days in bed and only look forward to getting out of the house on my doctor days. If I go out otherwise it makes me crash for way too long, I like you, don’t have a lot to look forward to and just exist. So I figured what I’m creating may help in someway to do more than just exist.

Once I have finished with what I am trying to accomplish, I will post it on the site. It is just showing others how many of us exist, how we feel, and show them, this disease is real. I am so tired of being made to feel like I am crazy every time I mention, I have long Covid. I went to the urologist this past week and explained what I was going through and that I had long Covid. They seem to treat me completely different once I mentioned that, I actually had to call back and get them to update my chart so that I could have their information correct about myself. Very discerning.

I want to thank you again for sharing such a beautiful insight on something that’s not so beautiful. If there’s anything you know, you would like to add besides what you’ve written so far, please let me know and I would love to include it. I am trying to let them know, as much as possible on exactly what symptoms we all have. And also let them know what we’re not getting help with.

I know I personally was extremely active and now for the last three years I have been considered serious LC, but have had issues for 4 1/2 years total and have not been myself . Now I’m 100% disabled. I can’t even walk on my own more than to the bathroom and back. Otherwise I need to use a cane or a wheelchair. I “crash” sleep 12-19 hours most days. Frustrating to say the least.

I hope you all have a lovely evening and look forward to more chats.

Thank you, Kelly.

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I salute your effort to gather information from people with LC about their lived experience of the disease and its symptoms.

dloos | @dloos | Nov 7 10:06am

In reply to @mbryant1380 "Thank you for your outlook on what gives you hope. And glad to hear that what..." + (show)

I would not describe my symptoms as “mild”. I am not in a wheelchair, but have mostly been in bed, or on the couch for three years. (Maybe this comment was for someone else?). But it is true that in some ways my symptoms are not visible, and so people think it’s nothing much. I am dizzy with hearing loss, blurry vision, tinnitus, hyperacusis and digestive complications.
I wish I had good tips for coping....but, I really don’t.

carlosmayo | @carlosmayo | Nov 7 10:15am

Thank you everyone for this needed and healing discussion. I have had LC for 3+ years. Here are some things that have helped me mentally
- finding supportive doctors. It took a long time, changed my PCP three times, and found a LC clinic.
- finding some meaningful activities/hobbies that I can still do and put time and energy there.
- trying to build a supportive network of friends
- meditating every day
None of these are solutions or easy or for everyone - it is still hard - but they help. Wishing all of you the best.

mbryant1380 | @mbryant1380 | Nov 7 10:22am

In reply to @dloos "I would not describe my symptoms as “mild”. I am not in a wheelchair, but have..." + (show)

Omg, I did reply to the wrong post 😵‍💫, so sorry!
It’s ok most of us are stumbling in the dark, looking for some light.
Yea your symptoms are far from mild.
Apologies again!

mbryant1380 | @mbryant1380 | Nov 7 10:39am

In reply to @carlosmayo "Thank you everyone for this needed and healing discussion. I have had LC for 3+ years...." + (show)

Such great suggestions! I think I may have to change my Primary doctor, he’s not unsupportive but not fully on board that my symptoms are Covid related. He’s more of trying to rule out what it’s not, if that makes sense.
Very sorry you are burdened with this illness too.
I’m going to try a couple of your suggestions, especially meditation, I tried but like therapy my focus was just trying to heal the physical, just think I wasn’t motivated enough to do it consistently. I just wanted the pain and symptoms to stop.
But now I need to help my mental health, to navigate through this “new normal”.
Thank You again.
Sending healing light and energy to you! 🫶🏼

kellysmail2016 | @kellysmail2016 | Nov 7 10:40am

In reply to @mbryant1380 "I completely agree! It so easy for some people to say things like that who are..." + (show)

Each word I read I can feel the pain. I am so with you. I cry all the time wanting to be understood. I want someone (Drs., family, friends a business associates from things monetarily I have to take care of) to believe what I am saying instead of telling me it’s in my head or because I gained weight. I gained weight because I have to energy to exercise and even walking 30 feet makes me so short of breath, painful legs, back and hips that I want to (and have), thrown up and collapse onto a chair or bed. I will sweat and get chest pains at times with it too. I love these people, but I agree, give them a week as we are and see if they don’t run and beg us to stop the torture!!

kellysmail2016 | @kellysmail2016 | Nov 7 11:09am

In reply to @mbryant1380 "Hi Kelly, yes I remember you! I think you want to start another support group outside..." + (show)

Hi Mbyant1380,

Yes, we have spoke a few times and I have reached out to two separate places about setting up something with no avail thus far. Still tugging away though. Had some really bad crash weeks lately. Slept close to 20 hours, was woke up by my heart going into SVT and having paramedics coming in wanting to take me to hospital. Honestly, my vanity kicked in, lol, and I wouldn’t let them. I had been basically in a three day crash and hadn’t left the bed except to use bathroom or grab a quick bite I could eat in bed before going back to sleep. So, I looked like hell. I had 6 young handsome paramedics looking at my hair standing on end, mismatched clothes I been in three days and breath I’m sure that could curl your hair. 😵‍💫. It was my SVT because I slept through taking 6 of my 19 medications and heart rate went to 224. I got it to stop right before they walked in. Embarrassing. I still want some dignity while dying. Dang!! Anyway, that’s been going on for about 3-4 weeks. Have monitor on my chest. 30 day one this time. Maybe something with finally show up to make sense of those issues and not have to hear (you need to lose weight and we see nothing wrong. ) SSDI just sent me a letter wondering if I would talk to their Therapist prior to making any decisions on my application. Unbelievable!!! That is why I’m putting together this info to get out there to everyone I can. I will let you know if I could use a hand/support. I appreciate and may seriously take you up on it!!! I will keep you posted. Keep inspiring others on here, you are fantastic at it ☺️

friedrich | @friedrich | Nov 7 11:38am

In reply to @carlosmayo "Thank you everyone for this needed and healing discussion. I have had LC for 3+ years...." + (show)

Thank you for sharing your account of what has helped you maintain your mental health while enduring LC.

c1john | @c1john | Nov 7 11:53am

Covid to Long Covid have been shown to make changes in the brain's neurological symptoms.

Since I got Covid in September 2023, over 1 year now for me, I have experienced brain changes. The close people around me tell me so, as well.
I am now a full blown introvert. I still go out and try to live my life but I hate going out and I hate a lot of people-how they act, if they get to close to me, what they say to me, etc. I perceive people to be nastier than before-meaning, I dont trust their hygiene.
I have had major depressive symptoms since getting the Covid.
.
Check out this article on the neurological aspects of it:
https://www.neurology.org/doi/10.1212/WNL.0000000000206148
Conclusions:
Neurological symptoms are common and persist in COVID-19 survivors, suggesting a substantial burden of these issues. This highlights the need for multidisciplinary services and resource allocation in the post-COVID era.

If you feel like you are a "different person" it is because, basically, you are.

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