Difficulty with reading and listening

Having computer trouble today so if message is incomplete. . .
New issue of RECOVER (a somewhat infrequent update on Long-Covid and similar maladies) covering research findings. I suggest that anyone with symptoms of Long-COVID, CFS, etc. consider subscribing. Take a look at the current issue and see if it is of interest:
RECOVERcomms@rti.org

@dlydailyhope @froggiiii @angiejones and @joanland I have never been diagnosed with Long Covid although I do believe I have had it twice - once undiagnosed and the second time (which “officially” could be thought my first time) diagnosed by testing positive.

The first time that I now (as in recent months) suspect I had Covid was when I woke up very sick on January 1, 2020. That day I remember so well, because I woke up feeling like I had the worst case of flu I had ever experienced! I couldn’t get out of bed for over a week, and still have a lingering cough that has no apparent cause now. Previous to this I was at the hospital for a week, visiting a friend struggling to recover from post op complications to which she succumbed.

In March 2020 Covid became a reality. I have often wondered if my friend got Covid in the hospital in early December when it was still unknown, or there were people in the hospital suffering from Covid but no one was aware of this at the time, and I of course may have caught it …? Who knows. 🤷🏼‍♀️ All I know is I have never been this sick in all my (then 73) years!

Since then, I also tested positive for Covid in July/August 2022.

I have often wondered if Covid was around a few months before it was made official.

@suefish pretty well into journey but it IS TOUGH. About a year-and-a-half in and still confused. Good to have this company.

@joanland
I would like to read this. Am I to email that address to subscribe or how do I find the latest issue? Thank you.

@harshguptajain
I have seen a remarkable change in my ability to do math in my head. And have the Vestibular issues. Found some Functional Neurologists to help but haven’t started the treatment yet so can’t report. Nice to know I’m not alone in all this weirdness.
Also- when I could exercise at all I found that being in a pool was the most tolerable.

Yes, yes, and yes. I used to read a novel a week at least. Now I read a chapter and the next day I can't remember what I read! What an adjustment this is for a READER! I will think of something I want to look up on the computer or phone and by the time I sit down , I have forgotten what I was going to look up. Short term memory is shot!
Also, my hair has thinned, my scalp itches, and I have the runny nose and eyes and post nasal drip so cough up stuff. These things are simply annoying but the ongoing fatigue and having to sit down after doing a couple of things is the real disabling part. This support site is both helpful and scary. When I hear of people that have been dealing with this for years -- just 7 months for me-- I worry. But I am better than I was so I am hopeful. By the way I am not taking anything for any of the symptoms. What is helpful is knowing I am not alone and people here understand how awful this is. My friends and family simply don't as much as they try. So thanks to all who come here.

@shario when i became disabled we were all still wearing masks so its been a long journey for me. Immediately i did research online and knew what care i needed. It has been a struggle getting it but i believe that you are in a much better position than those of us who got it earlier in the pandemic. The Delta variant was especially brutal. I meet criteria for ME/CFS with orthostatic intolerance. The fatigue is hard to explain to people who have never experienced it. They just think you are extra tired. Its way more than that. You know your truth. It hurts when people just dont get it. Im so happy to hear that ur friends and family are trying to be supportive. Sometimes you have to walk in someone elses shoes to get it. I have horrible internal vibrations. In the beginning i found myself announcing that symptom way too much. Lol i eventually realized that after 100x people run out of ways to respond to that and they would just look at me with a sad face. I then decided to think of myself as a warrior on my own personal mission. I know ur scared but you have many many reasons to be hopeful. I was an avid reader too. I am a teacher and when i went to the beach i took 7 books for a week. A book a day. When this hit me i could not read a book for quite some time. And my hair fell out. After a yr my hair grew back. I started reading again. Fun trips to library once a week. Then got covid again and it set me back again to not being able to read a book. I can read a news article or wikipedia and have no problem retaining the info. My sister explained to me the difference between the two. I still search for words in conversation. I also have heart issues going on. I am very much debilitated from all of this. But im a warrior and self care is my best weapon. I choose to stay positive, hopeful, find joy in little things, and count my blessings. There are different phenotypes of postcovid syndrome. Some people can still work but with reduced hours and accomodations. Some are totally bed ridden. I learned to pace myself and i can only be on my feet for 10 min at a time. Educate yourself based on YOUR specific symtoms. Its very complex because the list of symptoms is huge. The good news is that science is figuring it out. Help is on the way. There is many of us and there are researchers committed to helping us. Its normal to feel scared. Take that fear and use it as energy to propel you forward. Dont get stuck in it. Find your strength, persevere, be gentle on yourself, eat healthy, make sure ur drs are giving you appropriate diagnoses, and try meditation and seated yoga. When i feel sad that i cant read a book, i pull out an adult coloring book with my markers. Sending you good energy!! In my heart, i believe that i am going to read a big fat book again sitting on the beach!! I refuse to let that evil covid virus take away my future goals 🙂

@shario you have just described me!

@shario I have post vax syndrome. Fataigue, PEM, Internal Tremor, hair falling out temperature regulation problem, hair falling out and right from the start difficulty concentrating, and memory issues. I couldn’t read at all and when I forced myself I would quickly crash and the internal vibrations and tinnitus would occur. I believe long covid and long vax are the same disease. The reading problem has been ongoing for me for 4.5 years. I can’t even read books for entertainment never mind academic papers. I rely on my husbands brain and memory cause mine is just shot and I’m 55 years so this has been going on since I was 51. I can’t work. I was recently dx with Lupus SLE and Sjogren’s so for the people who have mentioned hair falling out….get your doctor to test your ANA to make sure you’re not suffering from an autoimmune disease. Doctors don’t seem to do this even though it seems like a natural thing to test since COVID impacts your immune system and so many people are suffering health issues systemically since either getting the vaccine or Covid. The ANA is a good place to start 👌. I found when the Rhumatologist put me on prednisone I had almost instant relief from fatigue and felt a bit sharper in my thinking. I then weaned off the prednisone and am taking methotrexate and the brain fog got worse but I still have improved energy which I will take any positive at this point. Good luck to everyone!

@hpgl19119
I didn't realize that the link I posted would insert my name. Sorry about that.
Here's a link which will take you to the Long-Covid RECOVER website. I hope you find useful into there.
https://recovercovid.org/long-covid

Another symptom I wanted to ask about is PEM. I feel exhausted after doing so little. My Dr. who I like mostly is telling me that I need to start exercising again. (he runs in the Boston Marathon so of course he would say that) So I started walking and on the 4th day, I walked farther than I have in months while in pain and exhaustion the whole way around the park. Well the following two days all symptoms were worse again and I was wiped out. PEM, anyone? My dilemma is I don't know whether I should push myself or for now, not try to exercise. I am 85 and live alone with my dog so I do cook, shop, do chores and take my dog out several times a day. Maybe with LC that is all I can manage for now.... Hope my photo of my Moxie will make you smile. ( my main exercise)