Help navigating the mental and emotional toll of long COVID

@mbryant1380

What medications have you tried?

Have you been on a long course of oral steroids?

I’ve tried Prednisone for sinus inflammation, felt better for a little while. The symptoms always come back.

So sorry for all that you are going through. Our pastor calls HOPE the human oxygen of the soul. I too struggled with that after my first round of covid pneumonia in January 2020. Excessive fatigue, insomnia, loss of appetite, and head to toe symptoms led to my struggle to get out of bed each morning. I’d lay awake for hours unable to sleep. So, the sleep deprivation led to depression. My daughter intervened and I started counseling which was a struggle at first cause I had nothing to say. I did start on a low dose antidepressant because I was desperate. Thankfully, the cloud lifted after going to a naturopath who treated my symptoms with supplements and accupressure. I will be praying for you to find snippets of joy throughout your day. Being out in nature did help.

@mbryant1380 Your dizziness/lightheadedness might be same/similar to symptoms I experience, however I don't fall and have not been concerned that I will fall. Suggest you challenge your thinking and perhaps you can be more active. That activity will certainly help you feel better overall.

The physical sensations in my head are unique and I have learned that they are classified as pain. They certainly don't feel good so I guess the default label is pain. I feel dizzy, but its not quite that, I feel light headed, but its not quite that, I feel like I just dropped on a roller coaster, but its not quite that. The sensation is variable and seems to correlate with how rested I am so I work on high quality sleep and moderation. I no longer consume alcohol because alcohol prevents good sleep and I use Apple Watch and iPhone apps to measure sleep quality and how well (or not) I am moderating. My Mayo program says to keep pushing on exercise, but don't overdo. Treat yourself like an injured but recovering athlete. It is a very slow go so do not expect results overnight. That's tough for me because I do have a McDonalds mentality, want it now.

In addition I have PEM and Exercise Intolerance. There is help. In August I went to Mayo Rochester, and have been on their program since. Feeling better, but not 100%. I am on Medicare and my total cost was $300ish. I know there are other resources besides Mayo, Mayo is just where I chose to go. Best wishes for your recovery.

I completely identify with this; Ive been Long Hauling over 3 years now. I now understand that I am grieving the loss of the life I not only had, but pictured for the future. Everything I knew my life to be is gone.
I don't tolerate physical and cognitive activity: I can't remember steps in problem solving or tolerate 8 hours of working on my feet as an ER RN-not only did I loose the 40-year career I loved, but I cant work 8 hours at anything which is a huge part of my identity. Lack of stamina prevents me from social events, especially after 5pm, gardening, running any distance, cognitively I cant multi-task well enough to drive safely with the radio on, grocery shop and cook or do laundry in the same day, travel alone.
This is very isolating. I was able to do a craft class once a week that ends at 3pm and can walk in my neighborhood for 20 minutes. I am off balance if I walk in a new place, but my brain doesn't have to work so hard when I am in familiar surroundings.
I plan no more that 2 easy things a day, no more that 2 hours of physical activity and less that 3 hours of cognitive brain work a day, and 'X' out 2 days a week that I don't plan anything to give myself some 'down' days to hold off that horrible post exertional crash; malaise is far to gentle of a word for feeling like I've been thrown off a cliff or hit by a truck.
Grief counseling is still a work in progress for me, I'm not anywhere near acceptance. I have a lot of anger under the surface and lash out at those I love which strains the relationships I do have. My best time of day is ~9am-2/3pm, that's when I plan my day. I don't talk on the phone after 5pm-I am more likely to be impatient. I nap when I need to. I was able to host Thanksgiving: dinner was at 2pm, I bought dessert and everyone else did the meal, set the table and cleaned up afterwards (I was the 'banquet hall' and everyone else were the caterers).
I am not the same person, Martha Stewart has left the building, sometimes I feel like just a shell of myself, other times I try to focus on what I CAN do-If I had had a bad stroke or been in a highway car crash I could be in worse shape. Right now I can live alone and independently in my own house, dress-bathe-feed myself, walk & talk. As an ER nurse, I've seen thousands who can't do that after a medical event, and I've seen many who have less ability than I and are happy.
The road is long and filled with potholes and construction, all I have to do is what is right in front of me, for today only.

Mental toll is just as tough as physical. If you’re able to get up and walk outside try to celebrate being in the sunshine for a few minutes. If you can read a book be glad because some of us have lost that ability or have been severely compromised in that way. If you are able to cook dinner cook yourself something that you really like and enjoy. Try for the small wins. And yes venting is healthy too . I don’t know about others but I get where you coming from. It took me a year to be able to go to work for two hours and I had to be driven. Two years later from that I’m now able to be at work for six hours. But this is three years of fighting the physical and emotional . Cut yourself some slack, and be patient with you. and if anyone tells you it’s all in your head like my father and or estranged husband has done at times, ignore them. Don’t argue. it’s not gonna get you anywhere except more frustrated and more upset. If you have a hobby like sewing or painting or drawing or whatever it is, and you can do any part of that hobby try to find joy in the ability of doing those things. I’m glad you’re able to see a therapist I wish I could my insurance doesn’t cover it and I don’t have the money. Best of luck and well wishes to you

I suggest you stay open minded about antidepressants. They’ve been a big help to me. Depression is a symptom of long covid, and of course what long covid does to you is also very depressing. Talk to a psychiatrist about your concerns about drunk interactions—there a lot of different classes of antidepressants. You may be able to at least suffer a lot less. I certainly have.

You all sound just like me. Just a shell of who I was.
I think my main concern is that I continue to get worse, so how can I be hopeful for the future? I am two years in with this thing. My main issues are perception. I’ve lost a lot of hearing, have blurry vision, swollen nasal passages and sinus pressure. All this makes me dizzy and unable to go about my normal life. I’m mostly housebound or going to my various treatments that make very little difference.
I have tried several antidepressants and they have all made my ears worse. I wish I could tolerate and I’m open to them. They just don’t work for me. When I look ahead, I only see myself in worse shape. My recovery has not started yet. How to be positive? I don’t know.

I know, I look at other people living their lives so vivaciously and such vigor, I envy them so much! Or even people going through worse than me, still find a way to be happy and live a fulfilling life, that humbles me. It’s been a year and a half for me, maybe in time I’ll learn to adjust to this new life.
You worded that perfectly, I’m grieving the loss of who I once was, active, adventurous, hard working, independent so full of life, use to jog or power walk at least 6-8 miles a week, in the gym. Now just walking is so uncomfortable from feeling off balance, even standing still I fell like I’m swaying.
I hope your condition takes a turn for the better for you…for us all 🙏

Thank you so much for that, you don’t know how appreciative I am of your words.
So glad things are getting better for you!
I wish you continued good health!