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.

dreaminasecond | @dreaminasecond | Nov 19 2:41pm

In reply to @ericy210 "I try to expect no improvement. A go to endless doctors, but there’s no magic bullet...." + (show)

I'm so grateful for your support 🙏

dreaminasecond | @dreaminasecond | Nov 19 2:41pm

In reply to @dreaminasecond "I'm so grateful for your support 🙏" + (show)

I mean the support you receive from others. That's wonderful 😊

dreaminasecond | @dreaminasecond | Nov 20 11:37am

No, I absolutely agree, empathize, and live that way. It's a struggle every day. I just struggled to briefly tidy up, panting, unable to stand without bending my knees and yesterday, standing, waiting for the elevator at docs office, I needed to close my eyes - the fatigue. But, I can't stop and think about that! What keeps me going? I think it's because I see my LC as a for that I must slay daily with little successes. I set little obtainable challenging goals and when I finish I feel like a Gladiator! I cuss at my LC...I heard that I am not supposed to do that. Whatever. Do what takes. Find out what it takes for you. Like I don't have a handicap placard because I refuse! I guess I'm a bit bitter too. I do try to laugh and just say, I am glad that I woke up on this side of the dirt. I have friends that I text a gratitude list to daily and it helps me alot. Depression is real. And I'm so sorry. Please hang in there. Keep looking for doctors. I do it in spurts because it can be so emotionally taxing. I'll fight hard for help for 6 months and take a couple off. GammaGuard IVIG treatments have saved my life. I'm so sorry. I hope you have a good day 🙏🙏I hope sharing helps

dreaminasecond | @dreaminasecond | Nov 20 11:40am

In reply to @dreaminasecond "No, I absolutely agree, empathize, and live that way. It's a struggle every day. I just..." + (show)

I'm sorry this comment is for
mbryant1380 @mbryant1380

debbie75 | @debbie75 | Nov 21 3:16pm

I, too, have been on this journey for 3.5 years with lots of referrals and, I don't know's from the medical professionals I have seen and treatments I have received. I am a licensed clinic social worker--a psychotherapist--and I have a hard time expressing my issues and an even harder time hearing, repeatedly, that they have no answers for me. I have been using intermittent FMLA since April 2021 and am now on short-term disability until at least the end of January 2025. Even my husband, who is also a therapist, doesn't believe that anything is wrong, that I am just being lazy because he cannot SEE my illness, the chronic and constant muscle and joint pain throughout my body, with the brain fog/cognitive dysfunction, and insane levels of fatigue. No one knows what to say, what to do or how to help. It helps reading and knowing that I am not alone in this, but it also depresses me that, after so much time, there continue to be insufficient answers for the thousands or millions of people suffering, just in this country. My words of wisdom seemingly fall short sometimes but here they are (what I can remember anyway LOL): hang in there, the world needs all of us and we learn and can grow in our suffering. Sometimes the best thing we can do is accept (not be okay with)--radically accept that this is the life we have been given each day. We do the best we can do each day with what we've got, love ourselves like we would love and care for others in the same situation. Listen to how you talk about yourselves and ask, "Would I say this to a dear friend who is suffering?" and if your answer is no, rethink those thoughts with gentle kindness. This takes practice and patience, I work on it each and every day and some days are better than others. Love yourselves, love each other, pray for peace and change...eventually it will come. DO NOT GIVE UP...

friedrich | @friedrich | Nov 21 5:09pm

In reply to @debbie75 "I, too, have been on this journey for 3.5 years with lots of referrals and, I..." + (show)

To debbie75 —

Thank you for your inspiring comment!

Wishing you a steady recovery.

— friedrich

mbryant1380 | @mbryant1380 | Nov 22 9:06am

In reply to @dreaminasecond "No, I absolutely agree, empathize, and live that way. It's a struggle every day. I just..." + (show)

I’m so sorry for you as well, suffering through all of that! I right there with you, a lot of us are. Struggling to stay upbeat and happy is so hard, I have to force myself to not be a bitter and angry. I do lose that battle from time to time, but I’m trying. I too have moments where I make so many doctor appointments to get answers, help something. Then I have moments of “what’s the use, what ever is going to happen, so be it!”
Yes my daughter says “mommy if you are able to get out to walk a few blocks or only complete one errand be happy and thankful” “small things mommy.” Because this is unfortunately my new normal now.
Thank you for sharing and your kind words. I pray for happier and healthier days and complete healing for you! You are a gladiator, keep slaying!!

mbryant1380 | @mbryant1380 | Nov 22 9:27am

In reply to @debbie75 "I, too, have been on this journey for 3.5 years with lots of referrals and, I..." + (show)

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!

debbie75 | @debbie75 | Nov 22 11:54am

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

@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!

law59 | @law59 | Nov 23 8:32am

In reply to @dreaminasecond "Pepcid absolutely! Guanfacine didn't like me, but I have heard from personal experience with a tutor..." + (show)

Hi @dreaminasecond. So appreciate your very real dark humor reaction to our journeys here. I hope @mbryant1380 and all others can also find it! Healing journeys to all with any
positives we can glean from the upcoming holiday times🌈