Do you fit this paradigm?

Me too. Countless doctors, treatments and procedures that really have changed nothing. I am very ill with no help, and very little hope.
I continue to try to find answers, but basically have no life any longer.

You and I are in the same boat. I hope you haven’t had to deal with the medical gaslighters. One of the hardest obstacles to treatment is to weed through them. I feel like that as well. You are not alone.

I had Covid in January 2021. I was really sick, not hospital sick, out of work maybe 6 or 8 weeks. I did go back to work. It was awful, I couldn't think. I could not stay awake. I couldn't remember how to do my job. I had been in contact with my doctor the whole time with all the weird symptoms. Then I had a gran mal seizure, blue lips, stiff as a board, chewed side of my tongue and cheek, woke up in a hospital. That happened in 06/2021, by that time there was enough to determine that I have Long Haul Covid. I was involved in sports, golf, hiking, gym my whole life, very outgoing. I was a a Loan Underwriter, I managed a bank and a solo artist, I had a music podcast, I wrote articles and was asked to review records before them were released. So they could use my tag lines in their promotional material. So far, I can do none of that. At first I was shell shocked. I couldn't believe that I could not unload the dishwasher. I fainted trying to put clothes in the washing machine. I got the basket of clothes from our closet to the laundry room, I was so gassed. Not even able to do a warm up portion on a workout video.
I have limited energy. So that gets tricky. I have tears of frustration, denial, of being tired all the time, that my body hurts, I keep dropping things, when is this shit going to end? And if this is what it is can we please stop. I have a massive headache ( I do most days) my eyes hurt) my hair has now decided it's going to flee too... I cry, this sucks. It's like we are grieving but maybe not, we have hope that we can be okay at some point

Would you mind if I ask whether you were able to get the vaccine before getting sick (gosh, I think it only became available a couple of weeks before you got sick). Did you run a high fever while you were sick? I cannot believe you went back to work at all. Do you mind if I ask what kind of a work up they gave you in the hospital? Was the seizure a one time thing? I wrote Patent Applications for Engineers which, like for you, is impossible now. I spoke other languages as well, but can’t remember them anymore. Long COVID is a thief that steals chunks of who you are until the chunks are all gone. Except for our professions, I could have written all that. All your thoughts are my thoughts. I think we are grieving the loss of who we are. I think that’s why we cry all the time. We’ve all lost a loved one…ourselves.

The thing I always tell myself is there is no data on this condition. You and I are part of the patient zeros of long COVID. How do we know this won’t resolve at some point? There is just no data yet. Thank you for sharing all that. This is so isolating and most people have no clue what our days are like. It helps when a fellow sufferer is generous with relating their experiences.

I haven’t personally experienced this pattern (I got long covid after getting covid in 2022, and I was vaccinated), but one of my doctors had a similar situation as you.

She got COVID in 2020 before a vaccine was available, it was a mild case, and she got long COVID. She got well enough to return to work, but then had debilitating fatigue, brain fog, she used to be excellent at mental math and now struggles with it, has short term memory issues, had to see a pulmonologist, etc.

I see her quite regularly, including when she had to take a medical leave and now she’s one of the specialists on the long covid team at the medical center where I’m a patient…she’s shared bits and pieces with me over time, especially after I got COVID, and that’s how I know this.

She has improved, or at least, she returned to work, though she still had the brain fog and cognitive slips. I believe she takes medication, though our conversations aren’t to that depth. She has shared with me that she had to take “radical rest” to recover and now she has to adhere strictly to pacing her activities. I remember when she first returned it was with limited patients, and now she only works during specific times of day. But not everyone has the luxury to do that.

I figured I’d share her story though if it helped to know you’re not alone and she did get better.

May I ask how you characterize your long COVID? As far as your friend, what kind of specialist is she? I cannot the imagine the stress she must experience. Do you notice the fog/slips when she is treating you? It does sound like she is making progress and fighting hard for it. Thank you so much for sharing that.

Yes, we have lost ourselves. That is so true.

I keep wondering if I am coming back, and fear that I am not. My issues are progressive. After two years I am not recovering. I am losing more vision, more hearing and more balance daily.

I am in treatment, but nothing helps.

We might come back. I wonder that, too, and my abilities are cratering. I will say, though, that the severity of symptoms fluctuates especially in the last year. Less shortness of breath, burning mouth, rigid muscles, balance issues and more muscle pain, tremors and mental problems. Most treatments are painkillers for muscle pain. sleeping medication (because it’s impossible to sleep with tremors) , steroids for rashes and anti-anxiety (to calm tremors/tics). It’s all symptomatic at this point.

I’m so sorry you are also going through this.

If I felt stable I think I could hope for some recovery. As long as my various conditions worsen, or I develop new symptoms, it is hard to be optimistic.

I try.

I completely understand. It is very hard to be optimistic. I try, too.

I miss joy.