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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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My mental health has definitely gotten worse. I've often wondered about the effect of inflammation on the brain. I had PTSD to begin with, but depression has been much worse. Losing who I was before covid has been difficult, so who wouldn't be depressed? Sending good thoughts to all who are still suffering. It is very hard to stay positive when there is no cure.
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2 ReactionsI read your post and wondered if you got your taste/smell back. I lost mine in December of 2022 and still don’t have either back. I’ve also had 7 Stellate Ganglion Block Injections and they haven’t worked, which in case you weren’t aware, are suppose to bring back taste/smell. They did, however, help with my PTSD (anxiety). I feel more calm. I know it could be worse, but if anybody were to say that to me, I’d have a few not so nice words to say to them!! It’s been awful to not have any foods to look forward to eating when you can’t taste or smell them.
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3 ReactionsI relate to everything you’ve shared
Sending hugs to all of us living with this challenge
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3 ReactionsAt some point during what I refer to as Episode#3 of Long COVID in 2023 I got a medical Social Worker that I meet with via Zoom weekly. She's been really helpful providing practical tips for being homebound, reinforcing meditation and helping me process what I'm going thru. Having a steady weekly interaction with a knowledgeable professional has been a greater help than I anticipated.
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4 ReactionsTo froggiiii —
Hopefully, your description of the benefits of engaging with a medical Social Worker via Zoom will encourage others to seek similar support. Especially people with LC who feel that others don’t understand the validity and severity of LC symptoms.
It might be helpful to folks if you described how and where you located a medical Social Worker, the cost of that service, and who pays for it.
— friedrich
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2 ReactionsGlad you've gotten support. I, too, would like to know how you have accessed this resource and whether it is covered by insurance. Best wishes to you.
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1 ReactionI'm over 65 so have Medicare and a supplement. My telehealth visits have been fully covered.
When I mentioned to one of my doctors that I thought some type of mental 'health' support would be helpful they gave me the names of several social workers. I did some 'google' checking, called one and had an intake phone call, and then started my telehealth calls withy social worker.
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2 ReactionsIt's now 12/26 and I'm just reading your post, @mbryant1380, and those of others. I learned long ago to not compare my mental good health or ill health to others. What we each go through is too complex to compare.
I had a revelation the other day that at least explained part of why I have days of thinking "no more of this" - both the physical and psychological pain. I have lost my hearing and have to wait for another test to then be fitted for hearing aids. I'd already lost my ability to walk more than few feet on my own - severe spinal stenosis before COVID and after, a rash that won't go away that causes swelling on one leg have made me far more immobile. My spouse takes off work to take me to and from docs. (I'm fortunate to work from home and still can for about 5 hours/day on a good day.) After the last appt. we went to a grocery - usually we order for delivery. I'd not been to this particular nice grocery in some time. It was awful in the wheelchair to not see or be able to communicate well "upward" and he down to me in the chair. I've lost my independence - the ability to just to out and walk and go where I want w/o help. (I don't drive; never did. Walked EVERYwhere.)
So yes, I had an afternoon and evening of feeling very sad - sorry for myself - doing the same saying there were people far worse off - those w/ long COVID for nearly 5 years among them.
We need to be allowed to and others in our lives need to appreciate what we lost. For some it may not be a visible loss and it's no different.
Take the time to feel sorry for yourself. If you need quiet time, I have found the bathroom w/ the door locked, a good alternative!
To us all, please if not a cure, treatment that works.
JE
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