If you have ever lost someone close to you, or been to a recent high school health class, you may hear a discussion on the Five Stages of Grief. They are listed below:
1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance
It has been a week since my last visit to Mayo. It's been a long week with lots of emotions. I would consider this week to reading the last chapter of your favorite book, knowing there is a part two that is releasing in 6 - 8 months. You have eagerness to finish the book, but feel hesitant at the same time. This week was the official kick off to the 12-week program that Mayo has for Post Covid Syndrome patients.
It begins with two, 4-hour classes with nurses and a small group of people, patients, all ranging with different ages, backgrounds, location, and length of time they have had persistent symptoms. A health coach will give you one on one instruction in how to manage symptoms. I have my first meeting with my health coach this week.
This post is about my acceptance of all the information I received this week. I completed my COVID classes with a small group. The nurses were helpful in giving us information on what Post COVID Syndrome looks like, who has it, and what the purpose of this group was. My group did both classes together so we were able to exchange emails and are able to connect to each other to share doctors we have seen and treatments we have tried. We discussed how long each of us has been having symptoms. It was validating to hear people from across the country share their symptoms and how they have been feeling. I have been in Facebook groups last winter, but that was so new. I was getting frustrated with not having any answers, so I left the group.
I had some time to allow for all the information over those two days resonate in my head. I needed to absorb everything that was said about symptoms, quality of life, what our "new normal" should look like. It was like a car accident. I wanted to look away but I couldn't. I just needed to think. The thing with Covid, is that it is unique to each individual. No two people, for the most part, have the same experience. Side note: None of the participants in my group were hospitalized.
The nurses rattled off chronic illnesses like fibromyalgia, chronic fatigue syndrome, orthostatic intolerance syndrome and a few more. Researchers have found that the Covid virus causes disruption to the nervous system. Symptoms from these illnesses are also symptoms that PCS patients are experiencing as well. This is helpful in figuring out ways to "cure" PCS (Post Covid Syndrome). Great! One more abbreviation to learn. COVID is not an auto immune disease, but it acts like one. The damage done to my nervous system is microscopic, because there are no specific tests created yet. Just like there are no lab tests to show fibromyalgia or chronic fatigue. It all depends on symptoms. This got me thinking. What if my symptoms are something else? What if my symptoms are covering up the actual illness? My anxious brain needed some reassurance. The nurse explained that yes, there is damage to your nerves, we just can't test it yet. The pain you feel is real. You will soon hear a lot about central sensitization.
Central sensitization is the result of a traumatic event, a virus, or serious illness. From the information presented, central sensitization is how previous chronic illnesses are linked. Essentially, my nervous system is on overload. My CNS is in charge of sending messages to the brain. These messages help us determine when something is safe or dangerous. My nervous system has been overloaded to the point where everything causes my brain to think it needs to be in protection mode. Part of the PCS clinic is for me to work with my health coach to rewire my brain. I have to retrain my brain and create new pathways. That was a lot of science stuff. NEXT!
I met with Dr. Collins from the Mayo Clinic regarding my initial appointment in October. Good news, no damage to heart and lungs to be concerned with. This was great news to hear and know that the symptoms are all COVID related and not an underlying condition that was missed previously. What's next? I will still meet with Back and Spine in January. The biggest question mark is the nerve pain and where it is originating from. Dr. Collins believes it is a syndrome known as French Polio, Guilliane-Barre Syndrome. This is where my immune system attacks my nerves and causes pain, usually in the lower extremities. When I go back in January, I also will have a MRA completed to check for any abnormalities in my blood vessels that would be causing the intensified headaches.
Well that's all great news you say! You're right, it is! Great news, however at the same time, a lot to process. Navigating health concerns during a pandemic has already been a challenge. Now, I can't do the things I used to do, at the pace I used to run at. The biggest take away from these meetings and appointments this last week made me realize how important it is to put your health first. It became impossible to run on high octane any longer. I had been burning the candle at both ends and my body couldn't keep up. The day I realized I could no longer try to do all the things: October 25, 2021.
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