My Long Covid Story

Today is Long Covid Awareness Day. There are at least 65 million individuals around the world have long COVID, based on a conservative estimated incidence of 10% of infected people and more than 651 million documented COVID-19 cases worldwide. The number is likely much higher due to many undocumented cases.

https://www.nature.com/articles/s41579-022-00846-2

I have Long Covid and I would like to share my experience to increase awareness and understanding.

After contracting Covid-19 during late September 2022, I have found myself struggling with the unpleasant and challenging symptoms, later to be diagnosed as Long Covid. In the first few week post the virus, I was still not feeling that I was back good health, so I reduced my workload at work and home, hoping I could recover and keep my business going.

My symptoms unfortunately kept getting worse. I even attempted a full month of rest over the Christmas 2022 holidays, but nothing changed. 

Some of my major symptoms included: Myalgic encephalomyelitis/chronic fatigue ME/CFS, Postural orthostatic tachycardia syndrome (POTS), low blood pressure, tinnitus, chronic headaches, muscle / joint pain, chest pain, memory difficulties, brain fog, sore throat, anxiety and poor sleep.

My doctor advised me during January 2023 to step away from work and other commitments, until I was well, otherwise I would risk being bedridden long term. With my wellbeing in mind, I made the important decision to step away from my work (Australia Day 2023), which at the time included delivering keynotes, workshops, coaching, my podcast, meditations and social media.

At that time I thought that all would be great by late 2023. That was the optimist in me. My working life had been going extremely well after publishing my wellbeing book (Finding Your WellBEing) and I was having a lot of fun with keynote and workshop opportunities. I was keen to return to it.

I didn’t understand early on how to radically rest, pace my energy effectively and adjust it, based on how I was feeling. I kept trying to take care of myself and our home. I went out to occasional events and then paid the price by being in bed for weeks. Initially, I would say to myself it was worth it for a night of fun. The truth is it was not and I felt so unwell and miserable.

My Long Covid doctor encouraged me to make some changes if I wanted to recover. I had to accept that I needed to say no to everything and yes to myself. I had to accept that I needed my husband to be my carer and that was very challenging for me, as I felt the incredible guilt of being a burden.

I also felt extreme loss and grief early in my Long Covid journey. The loss and grief I felt extended beyond work and included my personal and social life. My circle became smaller with the people in my life who would practically support, care, regularly check up on me and love me.

At the time I was not in a position to tell friends what I needed from them as I could not think clearly. I did not know. This makes me even more grateful for the loved ones in my life who just stepped up without me asking. Thank you! I love you more than you will ever know.

After a series of various health treatments during 2023, many which were ineffective and with a lot of rest / pacing, I did feel my baseline health had improved during November 2023.

My fatigue crashes had stopped. My blood pressure was normal. My headaches were few and far between and my brain fog had eased a little.

However this progress went in reverse, in the lead up to Christmas, as I exceeded my energy envelope. This was devastating, and I felt guilty that somehow I should know better. I felt guilty for the burden I felt I was. I felt sad that my Long Covid journey would continue.

It is now March 15, 2024. My baseline health has not yet returned to the November 2023 levels, but it has improved. I am choosing wisely to spend more time at home now. I am working on enhancing my immune system and retraining my nervous system. I have let go of the grief and some of the guilt which has definitely supported my recovery.

I now have better days where I can write, read more comfortably, paint, create some social media content, make my bed, tidy or put the laundry on (I don’t do all of these things in one day).

I now focus on a few things in my day that I work towards, and I listen to my body as I work through my plans. I am still resting and pacing, but I feel grateful that I am able to accept where I am right now.

Before getting Long Covid, I was running my own business, and doing A.L.O.T. I was proud of my book and making a difference. My mission, dreams and hopes, were to inspire others to change their life toward more happiness, clarity and peace.

My dreams are different now. I dream to have excellent health most of the time. To have the energy to enjoy more of the beauty in this world. To spend time with those I love. To let those I love know what they mean to me. To not worry about the future. To be proud of the past. To see the joy and light in today. To travel without crashes. To be okay with not being of service to others. To be okay with being of service to ME.

Thank you for reading this and for your support. I hope and pray for better awareness, practical support and effective treatments for me and the millions suffering with Long Covid.

With love, Mary