Long COVID: Accepting my new normal

Thank you for all the replies everyone...I havent given up and you all have gave me some good ideas and more stuff to research.
I just want to be able to do the things other 54 yr old healthy people are doing.
I look around at all the things i have done around the house ( Remodeling etc) and get sad knowing i cant do those things now.
It gets old when simple chores are now major chores.

Something that was inspiring to me was a post I read on another site about someone who suffered from CFS for about 15 years. The person, started seeing an integrative Dr. who looked into the mitochondria and found some dysfunction there. The user wanted to know the reason for the mitochondria dysfunction so did some further genetic testing which found a genetic condition that keeps this person from metabolizing certain fatty chains. After addressing this issue, the person felt better than they ever had before.

I took this info to my new functional doc (an MD) who is also running tests and behold, we are finding some very similar issues with me. This makes a lot of sense considering that people with diabetes are higher risk for COVID complications. Fats, carbs and sugars are important sources of energy for us (and viruses). We are still waiting on a few more tests but have already started working on the mitochondria stuff and I'm improving! I also did neurofeedback for anxiety and that opened doors for my ability to get out of this fight or flight stage (which can prevent the body from healing as well).

If you ask me, I think accepting a new normal isn't such a bad idea. One can finally transition and be at peace with accepting their present. I personally, just wouldn't give up looking for answers and advocating for myself!

@psalms121 ,
How are these people addressing the fatty chain issue?

Where do you get neurofeedback?

Wow, all of these responses are so emotional. Yours does stand out, so oddly similar. I contracted Covid in March 2020, however, I did not know it at the time. I am just connecting the dots with what was going on at that time.
Ironically, I feel fortunate not to have a wife and kids, I just don’t think they would understand; and that amount of stimulation sounds really difficult to deal with. I would love to have someone that stands by me through this, and I’m also grateful at the same time I’m not putting someone else through this. However, simple trips to the market are just way too stimulating, riding in an elevator with another person, or walking on the same side of the sidewalk with someone else I don’t know just freaks me out. Sometimes things are so confusing, it almost seems like people (complete strangers) are agitating me intentionally. This is not my norm, and my rational side knows better. Right now my life consists of being part of a virtual community where I hide behind an avatar, therapy sessions, and avoiding human contact at all cost. I’m not even a shell of a shell of my former self. I feel fortunate that there is still a side of me that believes the spark, the enigmatic life of the party is still inside of me somewhere. Sadly, the clock is ticking, at 52 years old sometimes things seem so bleak. I don’t wish this upon anyone, and I truly feel a sense of gratitude that I finally put together enough momentum to get myself involved in a community of people who actually do understand.

Hello,

How long did it take you (months or years?) please and what were your main symptoms? Was it a gradual recovery or you woke up with everything almost gone?

do you have the bronchitis? I get tonsillitis with mine it seems like almost monthly and I’ve been having long Covid since September October 2021 and luckily for me I have a great provider and the first couple times I’ve had to come into the office, but since then she just prescribes my antibiotic and eyedrop, because for some reason along with the tonsillitis, I get a eye infection in my right eye and we go from there

@hypofunction Can't quite tell if you are asking me or @da69.

My short version story, LC caused by Moderna Booster in November '21, went through all my local Doctors in Charleston, SC on the 'journey of what its not'. Along the way met a couple of medical professionals somewhat knowledgeable and willing to help. Finally after every test in the book locally went to Mayo Rochester August '23 and in September '23 was fully executing the Mayo plan. Today I feel better, not 100%, but better and I know how to manage my limits. A better place, but I am still using for 100% and contemplating Paxlovid as a 'knock out punch'. I wish you well.

Sunday, week ago, I had to go to the ER for an "episode" in which no testing could identify sources (CT, exrays, EKG, blood samples, flu and covid tests (Covid test does not have JN.1 in test profile...so always negative unless antobody test). I was not having Covid or flu symptoms. It was a sudden onset of feeling warm (building was also warm), then profuse sweating, then a wave of nausea like a wall hit me. I got out of the building, began cooling off, eventually lost nausea and sweeting returning to "normal". My heart rate was up well over 100, while doing nothing of physical nature. My BP was also up. So, we went to the emergency room. I was also excessively sleepy before and after the event. Everything on the tests was normal or negative. I have never had this happen before. But, the exray did show bronchitis. I had flu A, Covid, and bronchitis back in December and was still shaking it off by mid January. But, all cleared in the lungs. Then, the few days prior I had unusual congestion and a few other less significant symtoms. We attributed to a spike in cedar pollen. I have many allergies.

I think this caused the bronchitus to return. Twice in less than 40 days. I have had it various times with the Covid source virus variants. Not all though.

It seems I am more susceptible to bronchitis, no matter the source.

Your eyes... are you on prednisone or other steriod?

Tolsilitis, viral throat infection....

My provider said due to having long Covid my immune system is now weak. had never been sick before. I was a nurse at the VA. Never have been on any meds now I’m on so many meds since having a long Covid we also discovered that I have medication sensitivity so all of my meds that I have to take I’m going to experience all the side effects to them and like I said I’ve been getting it’s either that viral or bacterial. They alternate each month tonsillitis since maybe October of last year I’ve been having to take antibiotics practically every month yeah every month for my eye she gave me antibiotic eyedrops. and the symptoms that I experienced now are just really life-changing and I’m not I’m not old or anything. I’m only 48 years old. I have two teenagers that I used to actively participate with and now the only thing we can do is lay in the bed and watch movies together, because anything I try to do it just drains me completely. I have a big crash I’m trying to get used to this new normal so to speak but it’s hard of us very active with my children and with friends very social.

Max and all,
I do worry about dragging my family down. As with my friends, in my family I was the one planning birthday parties, and holiday events. I loved decorating and bringing the fun to our family gatherings. Now, I need help with most everything, and I don’t see that improving. My issues with distorted, diminished hearing and vision, make me very dizzy and clumsy. As I mentioned before, sensory issues are very debilitating, yet almost invisible to others. I know many of you understand. I feel as if I have been drunk, trying to act normal, for over two years.
So far, my husband and children have picked up the slack, and made sure we still do a version of what I did before I got sick.
I am grateful for that. But, I don’t want to be a chore to anybody.

I feel like I turned into an invalid overnight. I don’t want my husband to be my “caregiver”. I am older than you, but as a person who was really never sick, I expected many more active years. it’s really hard to accept how much I have changed.

I still try to have hope that something will work for me, and I will get back at least some of what I have lost. It helps me immensely to see a success story turn up here from time to time.