Post-COVID experience - a fellow sufferer’s ‘new’ life

Your story is almost identical to mine.
I had Covid in Feb of 2022. Now, almost two years later I am still seeking answers.
My husband and I call it “Groundhog’s Day”. I have been stuck here for so long. I am unable to tolerate noise, yet I can’t hear! Suffering tinnitus in differing degrees every day. I’m very light sensitive with blurry vision. Unable to play with my grandchildren or participate with friends and family. Mostly sitting in a dim room. I’ve lost thirty pounds and I’m frail and shaky. It isn’t much of a life.
I haven’t given up, and I’m still trying various treatments. I’ll be interested to read what seems to be helping you.

I am echoing to you. There is hope, just finding the right doctor.

I have had this disorder for 15 months. I started a plant-based diet three weeks ago and have experienced dramatic improvement in symptoms. I can be on my feet for 2 or 3 hours now whereas previously 20 minutes was my limit. I don't know if this is coincidental but it's sure worth a try.

Now to top off the misery of long Covid to which I was recovering I have now been diagnosed with CMML leukemia. Can the change in my blood cells been caused by Covid ?? I am distraught. I think I have heard others have abnormal cells and that after many months it reversed is this true?? Just awful I can tell you

Thanks for sharing your story. Mine is similar but different. What is interesting is that my worst symptoms started January 2023 also. I also tested negative but I didn't have any body aches or experience like I did having covid in 2021 or 2022. I got hit by a train in January which resulted in extreme fatigue that led to anxiety to things that were never stressful. My life got flipped upside down and I also had the sensory overload issues plus GI and POTS like symptoms that fluctuated. I am doing much better bit I have a long way to go. Best of luck in your recovery.

Omg! Thank you for that link! It sounds so much like my experience! I am so glad it offers some hope for my recovery. I’m seeing my ENT again next week. I’m getting a little better. It’s amazing how this virus has impacted so may people. At times, I wonder how this happened. Is it real? I am so desperate to get peace. I hope my therapy and meds will help.

@okradurham , I’m sorry to see you are having to deal with that. I’m not familiar with CMML I hope yours reverses. How do you feel? Are you in treatment?

I am so much better with the LC it is just another blow