When to accept permanent long covid?

You are absolutely correct....the people on this site are positively, absolutely, definitely wonderful in every way. I spent five years not knowing any LC survivor and then found the Mayo site. It is beyond heartening to finally learn that many people understand and are willing to "listen" to what the rest of the world seems to have forgotten or at least pushed aside. Being able to read postings at any time is uplifting because it is like having friends available 24/7. I chose not to enroll in a local world-renowned hospital's LC "clinic" after learning it was only a data collection center in order to prepare for the next epidemic. To get to that location required feeling well enough to drive through heavy city traffic, locate difficult parking and walk a long distance to reach the clinic...not for this breathless, arthritic 79 year old cancer patient on a cane. I've not heard of any medical facility actually "curing" LC while some individual doctors may offer more improvement than others via trial and error or sheer luck. We have such a wide range of symptoms, even though some symptoms are universal, that we ALL are our own best hope, best source of information and the most understanding of one another's plight. Physically we may never be the same as pre-Covid. However, we have one another to lean on, learn from, feel appreciated by and be heard. For all those reasons, we are a very special group of caring individuals who uplift one another. Sometimes it comes down to one human caring about another human...that's US!!! Only those who have LC understand others who have LC. Learning from this site and hugging you all lifts spirits!

Couldn’t agree more with your excellent summary of the helpfulness of this site. Two years of LC for me now and luckily I discovered Mayo Connect three months in… my PCP was (and remains) clueless. I got into the LC climic at Northwestern Memorial Hospital here in Chicago last September and as you point out, became just another data point for their research. One two hour meeting with neurologists, bloodwork and a recommendation for a six week course of cognitive rehab; exhausting and pretty useless. Without this group of compassionate fellow sufferers, I’d be lost in the gaslight. Friends try but don’t get it; lucky if you have a few loved ones who do. Buddhist principles, the Serenity Prayer and music keep me from becoming hopeless.. and this group. And poetry, and Becket: “I can’t go on. I’ll go on.” Much appreciation to the people here who understand and still manage to have compassion for others.

Couldn’t agree more with your excellent summary of the helpfulness of this site. Two years of LC for me now and luckily I discovered Mayo Connect three months in… my PCP was (and remains) clueless. I got into the LC climic at Northwestern Memorial Hospital here in Chicago last September and as you point out, became just another data point for their research. One two hour meeting with neurologists, bloodwork and a recommendation for a six week course of cognitive rehab; exhausting and pretty useless. Without this group of compassionate fellow sufferers, I’d be lost in the gaslight. Friends try but don’t get it; lucky if you have a few loved ones who do. Buddhist principles, the Serenity Prayer and music keep me from becoming hopeless.. and this group. And poetry, and Becket: “I can’t go on. I’ll go on.” Much appreciation to the people here who understand and still manage to have compassion for others.

I’m going to say something that none of us want to hear…I met with the Long Covid Comprehensive Center at Northwestern in the city of Chicago a few months ago. I was told by the Chief of Neuro/Infectious Disease & Global Neurology that I would not be getting my taste or smell back since it’s been over a year! He actually said that to me! He said the olfactory nerves get damaged by Covid and don’t regenerate. Well then how come so many have gotten theirs back after 2 and 3 years? He is not God, he doesn’t know all the answers, as he said he’s still doing research, so how in the heck can he say that to me? Then, I saw my ENT a few days ago and she told me that she’s heard that after 1 month you won’t get it back. She’s just mean! She had no business telling me that unless she has concrete evidence to back it up. These doctors are all tired of hearing our stories, but that doesn’t mean that they should be telling us things that aren’t true either! We are all angry over what has happened to us and we all need to be cared for! How about just saying, “ we aren’t sure yet, but are working hard to find a solution”, how about that!

You’re speaking the sad truth, @lkirnbauer. My experience with the medical profession since LC is that many practitioners are extremely averse to saying “I don’t know…”. Maybe they are taught in medical school that they have now learned everything. Leaves them stuck like the blind men and the elephant when they can’t understand what’s right in front of them. And then saying really unhelpful and painful stuff to us. To me this has been among the most frustrating (and surprising) parts of this experience… thankfully we’re here for each other.

I had long vax syndrome from 2022-2024. POTS, dysautonomia, couldn't sleep, rashes, Reynauds, problems regulating ambient temperature, blood pressure regulation problems, etc, couldn't be in sun, orthostatic hypotension, etc. I was on the couch for months. I decided to do as much physical exercise as possible and consume superfoods like clams 2xs a week, blueberries, kale, walnuts, etc, daily. At first I could barely do any exercise, then it got slowly better. I was sure I would never recover. I read somewhere that if there is nerve damage, it can take 2-5 years for nerves to grow back. Not sure if that is true, but I definitely turned a corner for the better at the two year mark and feel pretty much normal now. I found the best way for me mentally when I was sick was to accept my current reality, but realize that I could still try to improve on it. Good luck, praying for you!

The encouragement I find here is inspiring. There may be relief, somewhere down the road, if we can just wait it out while we do the best we can with our symptoms.

I wish the medical profession as a whole could be as forthright.

For me the answer to the originasl question, when to accept long COVID, is every morning when I get up. Life, wherever I find it, is new every morning.

I rejoice in the good days (even though they're not what I'd want them to be) and savor them. On a bad day (and they are more frequent than the good ones) I simply wait it out.

That may mean cancelling appointments, not making plans to see people, not taking on a scheduled task that goes beyond the limits of my physical lassitude and mental malaise. I may find that opening a can of chili taxes the limits of my endurance, and that making a salad and whipping up a simple one-dish meal is out of the question.

OK Lord... if this is it for now, thank you that I can still use a can opener and the chili, when I taste it isn't bad. Not long ago I had a dear friend die of ALS. In his last days he was eating though a feeding tube or not at all when he decided to call it quits.

I'm not there yet.

I'm thankful for what I have even while I wish it were more, that I'd get my life back as I used to know it and could somehow escape the bonds of what is. The present, however demoralizing, is what is and in the present there is hope. The trick is not to let the transient demoralizing factors occlude the eternal, where hope lives. My laments about the past, how I misspent it or what I lost, or my anxious projections and worry about the future take me out of the present - where my life is.

Living in the present isn't such a bad thing, whatever that present happens to be. It's there, in the present, that I can draw closer to God and listen to what He has to teach me in each present moment.

In my best of those worst moments I can still, in small ways if not big ones, serve others. And in that there is meaning, and at times, profound fulfillment. Maybe, as in a song I wrote years before COVID changed everything, it can be in something so simple as a smile for a stranger and a hug for a friend.

If you've read this far, here's one for you. God loves you and never give up hope.