I just finished another letter of the ABC’s for Living Well. The post is entitled “U” is for Understanding. It took me three months to write it. The reason for taking so long is that the new “Me 2.0” was unable to write about understanding in any coherent way until now. I could not understand why! There were fits and starts, but my brain was not on board. So, today’s post is two-fold. First, I’m celebrating a writing accomplishment. Second, I want to thank my doctor and the 61K new friends that helped me get back to a baseline of wellness. Let’s go!
Rereading my blog post entitled A New Perspective on Wellness, I noted that I was still unsure about what was going on with me, but in summertime learned that I am one of the 65 million plus people with Long Covid (LC) or Post Acute Covid 19 Syndrome (PACS). This diagnosis was confirmed by many lab tests and physicians. I find it ironic that I spent the last three years doing my best to avoid catching Covid-19, all to find out that I was one of those infected in December of 2019. I knew it would not be an easy journey if I was infected. I have learned from other long haulers that getting C19 repeatedly doesn’t make for “better immunity” and indeed can make things much worse for some of us.
Since December of 2019, I’ve had weird symptoms (noted in my ‘wellness perspective’ blog post). There was a serious trigger event in December of 2022 as well, but that is a topic for another day. From that trigger event, the last seven months have included new (sometimes very serious) symptoms. As I suspected, mast cells were hyperactive and could be made more so with any kind of exertion (mental or physical). With proper treatment, I now feel more like myself. I have more physical energy, mental clarity, and can speak without stuttering (so happy about that). I accept that this may be temporary, and I’m still protective of my spoons on a daily and sometimes hourly basis.
I want to thank Dr. Natalie Metz of Four Peaks Healthcare for guiding me through this complex maze of symptoms. They helped me not only with medical treatment, but also to find the resources I needed for community and healing. I have no idea what I would have done without them. If you are experiencing baffling symptoms, I can highly recommend them. Something we discussed at our first appointment was that I was unwilling to use the “H” (hope) word because I was too exhausted. They said, “Let me hold hope for you for a little while.” This still brings tears to my eyes; so grateful. I am now able to not only use the word hope, but I feel hopeful about regaining function and ability to live life more robustly. Maybe not like B.C. (Before Covid), but more robustly than in the last seven months.
Please know that if you have a LC or PACS diagnosis, you have my condolences, my empathy, and my attention. You are not alone. I believe you and I know a place where you can find 61,000+ other people who believe you. They are ready to share kindness, ideas, support, and insights for improving quality of life while living with and seeking healing for these conditions. If you need LC/PACS support, please visit the Long Covid Support Group on Facebook. You will have to answer some questions to join this private group. It is well monitored by thoughtful admins who are also LC survivors. There are rules of engagement that make sense. It has been my cherished resource and will continue to be as I climb out of the LC blues.
I am not going to share the “getting better” formula that is working for me because I have learned in group that everyone’s formula is different. I also learned that this is a roller coaster, and setbacks are equally as possible as the easing or cessation of symptoms. One strategy that has worked well to improve the cognitive piece is called Brain HQ. Subscribe to it for $14/month and practice often to help reduce brain fog and restore the brain neuroplasticity that can occur with LC. It is certainly helping “Me 2.0” to move toward “Me 3.0” (wink).
That’s it for today. Thanks for reading and wishing you well.
Please Note: The Long Covid series is intended to be both a memoir and an educational resource for the “living well” aspect of our mission. It is hoped that the content will increase empathy, support, and understanding for those living with chronic conditions. All site content is for informational purposes only and should not be taken as medical advice. Always consult with medical professionals to address new or persisting health concerns.
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