On days when my head is not throbbing so badly that I cannot think at all, I spend a little time researching “Covid Long-Haulers”, “Long Covid” or “Post Covid. It is known by many names. I have been through scientific and medical journals hoping to read about some breakthrough in treatment. I have been on YouTube watching videos from doctors that recognize that long term Covid is a thing. I have also been listening to other people’s stories. Unfortunately, there is no breakthrough treatment for us long-haulers yet.
I am doing my best to stay hopeful. I pray that this will be over soon. I have been through a lot of things in life but never anything as strange, annoying, energy draining, and never-ending as this. A good day for me is a day where I have only a mild headache and dizziness. I have learned that if I am having a good day that I do not need to do too much. If I do too much, I will feel a lot worse the next day or sometimes the next few days. I have symptoms that I do not even know how to describe. These are the strangest, unpredictable, and incapacitating symptoms I’ve ever experienced.
Doctors do not know how to treat this. It started out with “We need to wait a few weeks longer.” You should be better by the 4-week mark.” Then it was, “Let’s give it a few more weeks. By 8 weeks you should be able to return to work.” Then it was, “This lasts for months in some patients and you are most likely one of those patients.”
If dealing with this illness is not enough, I also am battling to get my short-term disability extended. I have not been paid since October 2nd because my claim manager is waiting on updated office notes. My doctor called and explained I have not been back into the office because there is nothing else that can be done to treat long term Covid. He sent a referral to an Infectious Disease doctor and he was waiting for an appointment date. That was not enough for the insurance company to approve my claim. So, I went into my PCP office last Friday that way we would have updated office notes even though they say the exact same thing as all the others sent to the insurance company. My PCP still has me enter through the back door of the building because he has not seen enough research showing that I am not contagious. No one can give him a definite answer on whether I am. The Tennessee Department of Health said I was okay to go back into the world on August 23rd though. I think I will go by what the doctors are saying since they seem to be doing the research.
The infectious disease doctor’s office called me on Monday and said after reviewing my medical records there would be nothing different that he could do that my PCP was not already doing. They set up a telehealth appointment for November 3rd so I could speak to the doctor because I have some questions I would like answered. I am not allowed in their office because I am still having Covid-19 symptoms.
On Wednesday I had an appointment with my ENT to see if he could help with my dizziness, ringing in my ears, and my ears feeling stopped up all the time. I started off with seeing the audiologist for a hearing test. My hearing has certainly changed since last year. I cannot hear any high pitch tones or sounds. My ENT said it is not bad enough for hearing aids yet, but it is a significant change from last year. My ears looked fine. There was nothing he could do for me. He said it is all Covid related and it takes time for some people to heal. I asked how much time. He said he wished he could tell me a few more weeks or a couple months but he said in all honesty he has no idea. He said we are still in the first year of this virus and everything is still new. He said I need to walk for my dizziness/balance issues. He said I need to drive instead of being a passenger for my car sickness issues. I explained that I cannot walk far before my heart starts racing and I feel like I will pass out. I cannot drive because I feel like I am very slow mentally and worry about not having a quick reaction time if a car pulled out in front of me or something. I really think this is something no one will understand unless they go through it.
I have learned how to deal with each day a little better since all of this first started. I plan a couple of tasks a day that I try to accomplish. If I don’t accomplish it, I don’t beat myself up because there is always tomorrow. God really blessed me when he sent Steve my way. He makes me laugh on days when I am feeling my worst. He does a lot of extra chores around the house. He drives me to my appointments. He encourages and loves me. I have learned that it is okay to ask for help. That is a big thing for me because I have always been a do everything myself kind of gal.
At the end of the day I know God is in control. With Covid-19 you can never predict what each day will be like, but I do hope for things to get better. I hope I will return to work, and my life will get back to normal. I always hope for a brighter tomorrow even though I do not seem too enthusiastic about tomorrow sometimes.
Isaiah 41:10 – So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand
I’m going to post few links that I found interesting or informational regarding Covid Long-haulers.