Do you fit this paradigm?

@meljocox It's hard to read the content we have here and not being moved by content, that sometimes is so similar to my experience that becomes a precious testament, in the sense that it makes me feel like I belong somewhere and that that the nightmare is real, I am not crazy… But even with loved ones, I am often lonely, I miss myself so much! I haven't been able to sleep, work, think or feel like I used to for almost three years now, I feel like I'm losing pieces of myself with each resurgence, like a flower that loses the petals.
I feel so alone and confused.
But at the same time that having more people remind me that I'm not making things up, read those words is so sad, for I feel the pain of many of you when the words are the ones that could have been written by me, except for small details.
We are far from understanding all of this and I try to think that it comes and goes so … I endure it. That said, I wish us courage and resilience, that we can persevere in the faith so that new understandings are emerging and that we can be closer to the person than we used to be and less confused. I am so sorry for us and for this disrupting experience. So, with this I also want to say how grateful I am for the opportunity to be here and to find some support.

The problem with all this looking, and changing doctors and going online for virtual appointments etc, would be difficult for a WELL person.
To handle all this and “advocate for yourself” (I’ve learned to HATE that advise), while extremely ill is truly beyond the pale.

I am fortunate that my husband has stuck with me and helps me do a lot of this crap. BUT, even with his help getting to appointments, I am still very sick.
Where is the advocacy for very sick people? I’m not seeing much of THAT. It’s up to me to make all the appointments even with a referral. In the “olden days”the doctor’s nurse would make those appointments while you were there in the office. Or would call you at home later to let you know when you could see a specialist.
Now it’s all on the patient. It’s not right.
I have been at the point of giving up many, many times over the last two years.

I really wanted to respond to this. For me, finding relief became a very unwelcome and horrific ‘job’. I did it; I spent endless hours researching, lots of $ on useless supplements, begged my neurologist and primary for help. My sister would help me gather information on LC and go with me to appointments to beg for referrals to clinics. I had constant emergency visits to my dermatologist for biopsies, patch tests, etc. It was a job. Sometimes I would be so ill during the many appointments I attended that I couldn’t speak, my face would tic and shake and, worst of all, I would cry. I’m so happy you have your husband to help. I have my sister but she can’t possibly really get it. I also sought out providers, harassed staff to get me immediate referrals/appointments. It’s hard work and so, so awful when you are so ill. I can’t offer solutions but I really get it. Because LC is not understood yet, it can only be treated symptomatically so the patient has to find specialists for all these symptoms…a neurologist for the tremors, a urologist for the cystitis, an ENT for burning mouth/smell problems, a dermatologist for the rashes, a rheumatologist for the autoimmune issues. I actually recruited my two most trusted doctors, my primary and neurologist, and between the two of them, got referrals that called me. Also, I cannot stress how important it is to catalog all your symptoms before these appointments…I used to keep a diary because every day was different. And…above all…do not let let ANY DOCTOR gaslight you.

That should be PATCH test, not psych test lol…stupid autocorrect.

Yes, you have described my experience. I’m still at it.
I guess I wasn’t looking for advise....I know what it’s like out there. I’m just pointing out, as others have, it’s terrible and WRONG that we have to work this hard for care when we’re SICK.
I hope you are doing better..
I am still trying.

There really is no advice but I feel less insane when I find my own kind. It is terrible and wrong. It doesn’t help being women either.

Agreed! ❤️

Oh man, I totally relate with everything you are describing. My frustration has led to depression along with the fatigue being debilitating and my cognitive decline is embarrassing. I’ve got a new primary and I’m hoping at my new patient appointment coming up in May, that she is kind and open minded. I have long COVID there is no doubt about it! My life has NOT been the same since January 2021.
I wish you all the best! Thanks for sharing.

So sorry for all you’re going through. Similar story for me. I’ve been taking LDN for two
months for neurological symptoms, which seemed to have helped, for about 6 days. Now symptoms coming back I’m afraid. Maybe too early to say it won’t work though. I was told it could take 6 months. Since my third infection 2/24, I’ve been feeling winded and vibrations again which I haven’t had in a long time- LC for 2 years now. Best of luck to you.

Yes! I wrote down symptoms as they occurred in early 2020. Covid hit me neurologically. I’m pretty sure I was only infected once, so all these symptoms have been from that original Wuhan strain. Initial symptom was amnesia (likely a focal seizure) and migraine (never had one before). The following week I was OK did not feel myself. I got the fatigue about a week and a half after initial infection. Then weeks later the nerve pain. I had a couple of other small focal seizures (small memory lapses) that first year. I was seeing a neurologist before the term long Covid existed. Doctors could find nothing wrong. Then everything went away. I started to feel great - felt mentally sharp, started walking daily and losing weight. Fast forward a few years and I’ve lost 50 lbs and have no appetite, and the brain fog is worse than ever. I had a lot of anxiety, but did not take meds for it, because I felt the anxiety was caused by the pandemic, and I felt I could manage it. Add poor sleep getting up 10-15 times a night. As you mentioned, I also found myself getting more emotional than before, and had a few episodes of sadness and weeping that were not normal for me - I am normally a cheerful and optimistic person. So lots of things were not ‘me’. Three and 1/2 years after initial infection I had a seizure that required an ambulance and hospital, and was diagnosed with Epilepsy. So to answer your question, yes, Covid symptoms seem to come and go over time. It will take years for the medical community to catch up with what we are experiencing..