I began this blog (and wrote the title of this blog) October 30th, and now, today, December 10th, I am just now coming back to it. My therapist has been waiting patiently for me to finish and post this blog, and I have tried several times, but just couldn't figure out exactly what I needed to say. It was all in my head, but getting it out into words is something I've been struggling with...But, as I sit here at 4:30 A.M., still dark outside, my cats roaming around trying to figure out why I'm up to interrupt their shenanigans, and my dog still sleeping soundly in our room (along with my husband), I'm attempting this blog again...
Last night as I scrolled through Facebook, I came across an ad for Madonna Rehabilitation Long Covid Clinic. I liked and shared it because I not only attended the Madonna Long Covid Clinic for 3 months, but still utilize their services as well. After sharing the ad, I noticed several laughing emoji reactions on the original post (not mine), and I saw that 19 people had reacted in that way. I then began reading the comments people were posting on the Madonna Long Covid Clinic page and became instantly emotional. Words like "psychosomatic symptoms" and "placebo effect" and "another fibromyalgia" along with conspiracy theories about the harmful lasting effects of vaccinations flooded the comments.
I know I need to learn to ignore these types of things, but it's just hard sometimes. When something has completely taken your previous way of life from you, how do you just let things like that slide off your back? What I also wish I could ask each of those people mocking Long Covid is how they explain how the estimated 9 million people in the U.S. alone, and an estimated 65 million people around the world who have been diagnosed with symptoms of Long Covid if it's just something made up in our heads. I would ask them to explain how we all just happened to have gone from perfectly healthy, active people living our best lives to being suddenly so debilitatingly ill that our careers, family life, social life, and physical well-being have been completely destroyed. How do we all just KNOW what symptoms to describe that replicate the symptoms of others who are also experiencing them? There's no other explanation for it. Long Covid is real and it's an ugly, cruel illness that even the most renowned medical experts are still struggling to figure out. Though many people do not have any abnormal test results, others of us do, and these clearly cannot be "faked" or "made up".
Though many people with Long Covid will go through a battery of tests with no definitive answers to their symptoms, I personally have had an MRI that showed some areas of white matter on specific areas of my brain that are advanced for my age. This would explain the split of over 40 points on my psychological evaluation between my attention/concentration/working memory and other areas of my cognitive brain function. For those who do not know exactly what those types of scores mean, when there is a large "gap" or split between scores, it means different functions of the brain are basically working at different paces or capacities which can make some aspects of my cognitive world really difficult.
A fact I don't think most people outside of the Long Covid world realize is that those who have cognitive and psychological issues associated with Long Covid present very similarly to people who have suffered a traumatic brain injury (TBI), therefore, behavioral cognitive therapy is used in much the same way for Long Covid patients and TBI patients. There are physical brain symptoms (such as advanced white matter, micro clots, etc.) that can contribute to these similarities, but there is also the psychological trauma that also plays a large part in those similarities. Having an illness, whether mild in nature or so severe hospitalization was necessary, which results in major life changes, causes a lot of psychological trauma leading to anxiety, depression, and cognitive function deficiencies. Many symptoms may also present closely with post-traumatic stress disorder (PTSD). A sudden medical event that impacts every aspect of your life is traumatic, and dealing with the sudden and unexpected repercussions of that can be devastating...traumatic.
Something I have really noticed regarding memory is that I can name off almost every student I had from the start of my career in 2001 to the end of the 20/21 school year. However, I have a very difficult time coming up with the names of the students I had during my final year of teaching, (the 21/22 school year) which was the year I got Covid and began having Long Covid symptoms. I recognize their faces, but I cannot come up with their names. It's horribly frustrating and makes me feel so guilty too.
Another thing that has been really difficult for me is word-finding. I know it appears that I have no problem with that when reading my blogs, texts, etc. However, the part no one outside of my immediate family sees is the amount of time I use googling "words that mean_______" or "synonyms of_______" because I just cannot find the exact word I'm looking for. I can tell you what it is similar to, what its definition is, and how I want to use it in my sentence, but the word itself is just GONE. I also have begun having another odd issue come up. When writing/typing, I will often use the wrong form of a word, even when I'm picturing the word in my head correctly. (And yes, since dealing with these cognitive changes, I have discovered that when I am writing/typing, I visualize the words as I'm typing/writing them, which I did not realize I had done until all of these new changes came about.). For example, I may mean "their", I'm picturing "t-h-e-i-r", but I type "t-h-e-r-e" and have to delete and retype it. Or, I am trying to say "meet" and I type "meat". The examples go on and on. I do it with most homophones on a daily basis. It's as though my brain and my hands aren't communicating correctly. I hate it too, because, as an English teacher and proud "wordsmith" by my own recognition, making those types of errors, and KNOWING the correct use of these words, is incredibly frustrating, especially when I don't catch the errors until after I've hit "send".
Though this blog ended up going in a different direction than I'd intended when I started it 6 weeks ago, I finally finished it. There is just so much I wish people understood, so much I wish even I understood about the changes that have occurred over these past 2 years. But, maybe someone reading this will be able to relate, maybe they will realize they aren't quite so alone, and maybe it will help them to feel a little less isolated in their own battle. If that is the case, then I've done what I have hoped and intended to do with my blog.
If any of you have a true interest in understanding Long Covid, want to learn more, or would like to find support for your own symptoms or show support for a loved one with Long Covid, I encourage you to join a Facebook Long Covid group. A good, legit group I would recommend is: https://www.facebook.com/groups/COVID19survivorcorps/
'Til next time...
