Long COVID: Accepting my new normal

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.

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.

I agree *cries* it does help to know some people have found relief. I know my senses are under a magnifying glass as I experience them. It’s not that I am not believed, just completely misunderstood; and makes it almost moot to be in contact with my limited immediate family. They don’t get it. I live in the north east, so it’s difficult to get together for dinners and eat outside most of the time. Public events are just too much stimulation. I feel like a moron, sitting indoors with my own family wearing an N95 mask. I don’t even have a specialist willing to admit there’s something wrong; with all of the tests with the same subset of symptoms as so many others: ANA in my blood, abnormal oxygen levels, vitamin B and D deficiencies, chronic urinary track infections, so rare in men in the first place, on and on…how am I supposed to believe I am not at tremendous risk of further harm to myself, or others with Covid still in play? I try to be of help to others, but it’s usually at the sake of suffering in silence. My most treasured activity now is reading and responding to these posts. Thank you all for being here.

You have to fight. Take courage, we are here for you, the faithful fellow sufferers.

First, examine your diet. It needs to be filled with broccoli, brussel sprouts (roast in olive or garlic oil with salt, black pepper, garlic powder at 500 until blackened edges), garlic (fresh, powdered or fine granule, oil, any way you can get it), peppers (any kind, but spicy means higher capsaicin and Vitamin C), cabbage (fresh, sour kraut, or light acid pickled), cauliflower, green tomatoes (air fried or fried in olive oil), asparagus tips roasted in olive oil or garlic oil with salt, black pepper, and garlic powder.

All are excellent flavors, but specifically produce phytochems that prevent cancer (selenium and phytochems), virus, bacteria and mycoplasmas. With daily ingesting these you are making your body inhospitable to fungi, bacteria, and viruses.

Why? These are the compounds that protect the plant and also us.

It iswhat God made. It protects the plant, the animal, the human, when consumed.

First step is diet (food).

Then exercise. Blood circulation is critical to prevent clots and circulate phytochems.

All I write you cam search on the internet to confirm in nonwestern publications (refereed journals).

Fix your intake.
Take good prebiotics. The immune system is generated from the small intestine, mainly.

Next, vitamin C at doses of (depend on body weight) 5000 to 10000 Mg per day. Exsess is expelled in urine.

Make your body inhospitable to the Sars CoV -2 virus.

Alcohol works also. 1 oz per 100 lbs body weight ( 45% ) with carier of ice, water, clear soda each 4-5 hours until fever is gone.

Fix these first.

Then, exercise or walk. Slight activity first. Slow, then increase weekly.

Fight.

Do not let this virus consume your life.

I take plant foods, plant extracts, and oil. All together they are better than any medication I have tried.

I have a Ph.D. in pathology, have excessive environmental allergies, many medicinal allergies before covid, and have had covid and long covid 12 times. I have had 3 pulmonary embolisms, 1 DVT 34 inches long, and 4 SVTs. I have Covid Reactive Viral arthtis which the pain is excrutiaing on each flare in a joint my body is attacking to kill the virus in the minicis tissue. Terrible. I was in a wheel chair off and on, and on crutches 7 months. Doctors did little of nothing for me.

My personal doctor was by my side. The rest, covid groups, covid specialists were worthless.

Check my posts on foods, supplements, and such which helped me.

All suggestions are based on refereed journal publications, personal dose reponse testing on my body, or historic (hundreds of years) use of phytochems.

Read about phytochems. Many types. Read about nicotine (patches, gum, pouches) on covid and long covid.

Massive impact. I have experienced it. Currently. The nicotine is dose response. Meaning body weight, metabolism change dose upwards. See Viritage medicine, nicotine.

All I write can be searched and find corroborating refereed journal articles.

We are with you. I sit in a hotel room typing because my prednisone dose to stop the covid arthris flare keeps me awake.

We are here for you.

Jt

One day or half day (or make it to lunch) at a time.

Simplify reasonably, as much as you can. Make work and home a repetitive "muscle memory" exercise.

For me, i removed new things, new projects, new work, home and work. I removed unecessary or hard things that had no or little value in all reality.

Streamline all. Not relationships.

Focus on good sleep, being healthy, doing healthy, eating healthy, if you can, some modest walking. Five minutes. I walked 150 feet up a less than 1% slope, repeated the next day. It was hard, my sweat fit started, I could hear my heart beat, and after the exhaustion wall hit me (someone said it was called PEM ot PME). Yeah, the wall and sometimes (most for me) the symptoms get worse after exercise or vigorative movement. I had never head of PEM (or PME). But that is what ai am seeing.

So many syptoms and side effects. I jusy want to eat dirt and drink coffee. Kill all of it....

I would probably starce first.

Remember, one foot at a time, one day at a time or quarter or half day or whatever.

Left foot then right, repeat. Keep moving and heading forward.

It is a journey. Last year right now I was on crutches, then transitioned to wheel chair as the Covid reactive arthritis got worse. Then the pulmonary embolisms and leg deep vein and shallow hit...and so on.

Take stock in now. Forget this "new normal". Life is a journey. You take it or it takes you. Your choice.

One step, then another.. go do life.

The meanest doctor I had said, "you are an enigma". Then he said, "go live your life". As if, there was no future, finish your bucket list, see the moon, or whatever.

Punk. Glad I am not dirty Harry or anything close.

I was in shock to all he said. He did not motivate me, doscourage me, no credit to him. He was mad he had a Friday appointment. When we were walking out he was lecturing the staff about his schedule for appointments. What a useless human. It is sad. All that knowledge and all those tools and he asks me, "why are you here".

Punk.....

Npinner04, keep pushing, keep fighting, eat well, have joy in the days moments that are good, let the bad moments be flushed.

Jt

I have been battling Long Covid since October of 2021. The feeling of acceptance of a "new normal" is very cyclical for me. There are days where my outlook is more positive; when I feel slightly "normal" and I say to myself, "be thankful it's not worse and for how far you've come."

Then, my symptoms flare up and the frustration, resentment, sadness and fear consume me. (Chest pain / tightness, shortness of breath, fatigue, joint pain, and excruciating headaches.) I become afraid that I may not wake up in the morning, or that I will suddenly die carrying out normal activities. I fear that my 2 young children will find me lifeless. I make sure my affairs are in order and that my dying wishes are written where someone can find them.

Next, unwilling to except this pitiful state of being, I begin the process of fanatically seeking answers again, hoping that I can stop the cycle. Each time I learn something a little new. I earn another piece of the puzzle. With each piece, I tell myself I'm one step closer to feeling like myself. If nothing else, a version of myself that doesn't feel the need to plan my own funeral.

Then, there's a glimmer of hope. My symptoms subside for a few days. I make the most of those days, making memories and smiling with my family.

There is peace in knowing there are others like you and me out there and, with any luck, someone reading these forums will help us put the pieces of our puzzles together.

Keep fighting the good fight! Don't lose yourself or hope.
Leah