I may have survived COVID / Coronavirus but it is far from gone. The purpose of sharing my story is to connect with others who are going through the same thing. Since COVID is still so new with so many unknowns, the long term sufferers like me are left to be our own doctor/ healer. What are the COVID Long Term Side Effects? Well, there is not a textbook or a class that Drs can use to help people like me. There are no specialists who went to years of school to learn all the things about COVID. And that is where the problem lies and that is why I am sharing my story. I decided I do not need to suffer alone! I know others are suffering alone too. Well, you are NOT alone! Welcome to my world.
FIRST: I need to make it very clear I am NOT a doctor. I do not claim to have answers and I am not qualified to give medical advice. This is only my experience.
I had COVID and it hit me hard. However, I was so lucky that I was able to recover at home. I did not require hospitalization, thanks to God for that! At the time that we were diagnosed with COVID, it was still new and there was no approved treatment. I had a breathing treatment, EKG, tests, and then sent home with cough medicine and basically a “good luck” sign off. My Dr, who is amazing, did offer something for my body aches. But again, there was no treatment. No antibodies, or approved treatments at that time. So my husband and I suffered at home. I was out for the count for at least 4 weeks. I was very weak. Very disoriented. Very sick.
When I got my 2 negative tests I breathed a sigh of relief. I was believing what I had been told and thought “whew, now I am immune and I lived through it!” It was over and I survived. But I was wrong!
A few months back I realized some things were still just not right. I was just not me. With my history of chronic depression and generalized anxiety, My first thought was that my depression was spiraling and so the medication changes began. Anyone who suffers from this illness knows that is never an easy thing and in general, something I dread.
I also considered that I was going through menopause again! So my doctor increased my hormones but that didn’t help either! You can see why in the symptoms below. ( For those who do not know, I had a full hysterectomy and went through surgical menopause years ago. )
COVID Long Term Side Effects – It’s Still Not Over
So how did I realize I was suffering from Post Covid Syndrome or some are calling it “the long haulers”? It is popping up more now as more of us are speaking out. I discovered Diana Berrent while doing a Google Search. And WOW! She is incredible! After surviving COVID she vowed to help others! This led me to her organization, Survivor Corps. It has quickly evolved into one of the most active COVID-19 support networks and research tools in the world. They are also connecting, supporting, educating, and motivating those affected by COVID-19 whether now or a survivor. To see more about Diana check out her Coronavirus Diary, to get a glimpse of her struggle. Diana’s goal now is to grow the Survivor Corps, the Peace Corps of the COVID Generation. I do not personally know her but I had to give her a HUGE shout-out. Because, WOW!
So, after discovering the Survivors Corp, I realized there is a whole network of people out there that are in the same boat as me. When I started reading their posts I wanted to cry! These people recovered at home just like me with little to no medical help. And now, they are struggling to get back to their pre-covid self! There is no real research on this because we are all suffering in silence alone. The doctors are not listening or they do not know what to with our symptoms either.
The Post Covid Syndrome or “Long-Hauler” Symptoms
So what are we all experiencing? Well, that is the weird part. Just like the way COVID affects everyone differently, the post covid symptoms also vary from one person to another.
The list of “long hauler symptoms” or “Post Covid Syndrom” symptoms is long, wide, and inconsistent. For some people, the long-term coronavirus symptoms are nothing like the original symptoms when they were first diagnosed with COVID-19. From what I have researched, the most common long hauler symptoms include:
- Body aches
- Joint pain
- Shortness of breath
- Loss of taste and smell
- Difficulty sleeping
- Brain fog
“If covid-19 plays out anything like SARS and MERS, there will be quite a bit of this longer-term mental illnesses and fatigue,”Ed Bullmore, a neuroscientist at the University of Cambridge and author of The Inflamed Mind.
Interesting Fact: And a recent meta-analysis suggested that depression, anxiety, insomnia, and fatigue were all found in about 10 to 20 percent of patients in the months following recovery from SARS. *
The symptoms I am having are:
- Body aches that come and go (Kind of like the flu every few days)
- Constant lower back pain (I did NOT have this pre-COVID)
- Severe night sweats (like menopause bad— I’m waking up soaking wet!)
- Brain fog daily making work and daily tasks difficult. It is harder to remember things and multitask than I could before.
- Headaches! (I’ve always had migraines but they got much worst post-COVID)
- Fatigue that is really debilitating making it hard to do daily functions
- Depression x 10
- Anxiety is sky-high
- Things still taste different and I have a tingling on my tongue.
- Congestion, much like allergies that are worse than before
- My immune system is weaker! I got the flu without coming in direct contact with anyone that was sick.
- Memory issues
- Diarrhea (–Hey, I’m just keeping it real and honest!) My stomach is a mess.
No fun, right? I feel like crap and not like me! I have started my research in finding ways I can heal myself and build my immune system back up. I have some appointments coming up and hope to get some answers on what I need to focus on first. I also need to see what actually needs medical attention and what I can treat with alternative methods.
I would really like to connect with others like me. Did you survive the worst but you are still not yourself? Please share your story! Please share what you are doing to help. Have you found resources that are especially helpful? Please! Please! Share!