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Having long COVID, how is your mental health?
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 ☺️
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c1john: Thank you for the video and the link to the scientific article about the neurological symptoms of LC and the potential causes.
you are welcome. Hope any of it helps people.
Thank you. I am creating something that I hope will make others, hopefully ones that matter, really think again about how we are treated. It’s more than unfair, it’s shameful. I have been through so many people (Drs, Lawyers, Insurance Companies, Family-which hurts the most, Friends and just the people you run into) who think I am
just overweight and want to blame something else for my bad eating habits. Example: I was coming out of a new Cardiologist office (terrible trip- never touched me and handed me a copied piece of paper on POTS. I research my illness 5 hours a day on reputable sites, and I do not have POTS. I’m one stuck at home sleeping with no life do to the terrible PEM), so I try and do as much self help as I can. Anyway, after me firing the Cardiologist, I was walking out with my cane in hand and had to sit because of the pain and SOB. I will vomit at times and don’t want that at the front desk of a Drs office. 🧐. This man walking in with a walker and over weight, red swollen legs and about 20 years my senior said, you really need to loose the weight so you don’t have to sit and catch your breath. This was loud and in front of about 6 other people. I wanted to yell back at him, and for that matter the Cardiologist too, IM NOT JUST FAT. I HAVE SEVERE LONG COVID THAT HAS CREATED ALL THIS. OUR GOVERNMENT OR MILITARY DID THIS TO US IN SOME SORM OR FASHION!!! But I refrained and just cried instead when I got to the car. I eat really no different that I had before, I just don’t burn it off like I was. Plus my thyroid has changed and other possibilities too being looked at. Does anyone have Lymphedema from all this? Or and swelling at all in the legs? Anyway, I’m ranting again. I get so aggravated each time I think of being dismissed or rejected by their lack of knowledge. Thanks for letting me vent. I could go on and on. lol. 😏
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2 ReactionsInteresting. I will post your info. All aspects of this disease need to be known and researched. Thank you!
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1 ReactionOh man, you are fighting the good fight through all your struggles. I so sorry to hear you went through that. But you are keeping your humor through it all, it was a terrible thing you went through but I had to laugh as well. Especially the mismatch clothes with the cute paramedics Lol!! I pray they find something to help you, I hate hearing your going through this.
Yes I am here! And thank you so much! I want to give that glimmer of light and positive words to others, even though I’m going through hell myself!
Hope to hear from you soon!
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1 ReactionDefinitely!! Glad you laughed too. I try and be as funny as I can because I love humor. If you can’t laugh at yourself then who can you laugh at!! You are in the same boat, so we can fight this together. I’m
Going to make some calls tomorrow. Chat then!!!
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3 ReactionsThat’s ok. I had a feeling you were replying to someone else.
I do think we have to be very
careful not to be dismissive of the symptoms of others. We get enough of that from people already. Nobody can really know what someone else is experiencing.
Thinking more about tips..
I watch a lot of movies, get outside when I can, and take many quiet breaks during the day.
Good doctors help, but are almost impossible to find.
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2 ReactionsI’m going to restate that. WE ARE ALL IN THIS TOGETHER. IM FIGHTING TO HELP EACH AND EVERY ONE OF US IF I CAN! 🙏
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3 ReactionsOh my goodness ! I totally hear and understand you ! I am not the one with LC it is my lovely fiance who has suffered for 42 months - therefore I suffer ( in a different way ) with him.
I am so sorry for what you are going through and you aren’t Debbie Downer - you are simply being honest and need to be heard and validated ! There is always “ someone” with more or worse ….. or whatevr BUT that doesn’t have anything to do with your situation . Long Covid has taken so much from those of you who suffer day in and out - weekly - hourly - etc and with no end it sight ( it feels like) . I absolutely hate that there is nothing I can do —— and to see him suffer is so very hard…… he is a totally different man. Unfortunately MOST people look like you have two heads when you “ try” to explain it . So —— allow yourself your feelings and when you are having good moments cherish them —— 🌺
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5 ReactionsThank you for those kind words. And I am so sorry that your fiancée (and you) are going through this as well. Yes this is condition robs you of so much, mentally emotionally and physically.
Sending positive and healing energy to you both!
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