22F- In March of 2020, I contracted covid from one of the first confirmed cases in our state. My friend’s boss had travelled to Wuhan and upon returning, came into work for a few days and then started feeling sick. He ended up being one of the very first confirmed cases of coronavirus in my state. Unfortunately, my friend came over to my house for dinner and broke the news that her boss had coronavirus once she was already inside of our home at our dinner table. My stomach dropped; why would she come over if she had contact with someone who has Covid?
A few days later, my partner fell sick, then I went downhill a day or so later. I felt terrible for two weeks. My fever wouldn’t break, I was non-stop coughing, my whole body ached. But then I recovered. And I spent the summer months doing what I loved most; hiking and biking with my dog Ellie.
Until one day in August, I woke up and my heart was racing. I checked my pulse and it was 185 BPM- I had no idea what was happening. I called my doctor and ended up going to the hospital. I was referred to a cardiologist and over the next two months I became gradually worse and worse. I began fainting when standing, my heart rate was going over 200 BPM, and felt like it was going to jump out of my chest. In November, I was diagnosed with post-covid dysautonomia; which is an incurable condition caused by post-viral damage to the autonomic nervous system. My world felt like it was crumbling apart. I wasn’t able to walk even one hundred feet without having to rest to avoid fainting. I stopped being able to work and I had to leave behind my dog training and pet care business that I had spent several years building. Almost a year and a half later, we now know that I am not an uncommon case. So many people are suffering with post-covid disability or long haul symptoms.
I have gone through many experimental treatments. I would watch your streams for hours while getting IV infusions multiple times per week. Unfortunately I found no relief from any of the treatments we tried, and I am now in a wheelchair outside of my home which has been a huge struggle to adjust to. Thankfully I was just accepted from a program to receive a service dog, so once I am able to fundraise an obscene amount of money, I will be able to receive a dog that will alert me to my fainting episodes and act as a mobility aid so I am able to go out once more without relying on my friends to help me.
I am struggling to stay positive and learn to adjust to my new way of life. It is so hard to not dwell on the past and wish that I could have my old self back so I wouldn’t take any moments for granted. If you’re reading this; cherish the little things. You never know if one day you will wake up and your life will be flipped upside down.
Thank you Kit, for the laughs and the smiles. I watch every single stream to keep me in good spirits.
welcome to the heartsupport forum, i am so glad you’re here and thank you for your vulnerability with such a life-changing event. the effects covid has left you with is unfair and has probably been really frustrating and scary. this virus is nothing short of evil and i’m so sorry you had to face all of it at the start of the pandemic, when we barely knew anything about it.
my hope is that as time goes on, and we are able to study covid more in-depth, more treatments will come out to help support diagnoses such as your post-covid dysautonomia. with sudden diagnoses like this, the best thing you can do is to have hope for the future, one with treatments, more affordable mobility aids, etc… until then, you are facing the now. and if your now is meeting a loving service dog, enjoying streams like kit’s, and making the most out of each day however you can, then i believe in you. and i’ll continue to believe in the scientists fighting every day to find treatments for what you’re going through. and i’ll continue to have you in my thoughts, sending you love and comfort on the hardest days or even the easy ones. you are not alone, my friend, and your heartsupport community will always be here for you.
It is truly heartbreaking and unfair that covid has been affecting you so much and that its long-term effects have such an impact on your life. You are now learning to adapt to this new reality and take steps that are necessary, but how I wish you didn’t have to, my friend. It really makes sense to look at the past sometimes and long for what was before. You are still processing this huge transition in your life, and as you do your heart is grieving too. On one side, there’s the need to keep moving on and to focus on what can be done. But on the other side, there’s what seems to be left behind, the feeling that it is now out of reach and the desire to control even just a bit of that again. It creates a tension in which you find yourself, and for this very reason I couldn’t echo more wholeheartedly what @Twixremix said about being in the “now”. When so many things seem out of control and uncertain, we can find refuge and comfort in focusing on what we can do and on what life has to offer right here and right now. It is not always comfortable to do so - as human beings, we crave for real perspectives -, but it is still a way to approach life that can be learned, step by step.
I want you to keep having hope, friend, even in the midst of these hardships and uncertainties. We may not know what the future holds, but I surely believe in you, in your ability to build resilience, to keep growing and embrace what this life has to offer despite it all.
Please rely on this community as well whenever you would need an ear to listen. You are not alone. We’re in this with you.