If you would rather listen than read: listen to the podcast the lovely Jackie Baxter did with me on the Long Covid Podcast: https://podcasts.apple.com/us/podcast/32-esthers-recovery-story
I got sick in March 2020. I felt exhausted and couldn't do anything but lie down. I went to see the doctor because it didn’t feel like normal fatigue. Blood was drawn, but the tests came back normal.
I got better, but two weeks later the fatigue returned, this time accompanied by a headache and a sore throat. And also, my sense of taste was gone. That's why I suspected I had Covid. Unfortunately, testing was not available yet in the Netherlands at that time.
After 10 days I got better again, but then three weeks later I got sick again. This time I was also short of breath, and my fingers tingled. Still there was no way to get tested unless you were hospitalized and I wasn't because they coudn't find anything wrong with me at the hospital Covid outpost. But in the mean time I couldn't walk five meters without gasping for breath.
This went on for the rest of 2020. I kept getting sick for a few weeks - and getting better. In July, again, I suffered from many symptoms, and finally I was tested for Covid. But to my surprise, the result came back negative, and so did the antibody test that was performed next. I couldn't understand any of this, because how could I be having all these Covid like symptoms and not have Covid? The doctor said it was very well possible I could have had Covid and not have any antibodies anymore, because with some people antibodies disappear after mere months. But there was no way to know for sure, and I was left in uncertainty and scared.
In December 2020, I got sick for the umpteeth time and I couldn't take it anymore. I felt I really needed help and I called "C-support", a support center for people suffering from what was by then called Long Covid. It was here that I finally found someone who listened to everything I had to say and gave me the recognition I needed. Told me I was not crazy, and I was not making this up. That was very important to me. Also, they told me that I was going to need help recovering, and that I would not be able to do it alone. Again, this gave me the recognition I needed, but in hindsight, it also perpetuated the fear that something was terribly (maybe uncurably, nobody knew) wrong with me.
In January 2021, my Long Covid 'treatment' began, consisting of occupational therapy and physiotherapy. The occupational therapist told me to pay close attention to all of my symptoms during and after activities. I did so meticulously. Taking the same therapist’s advice, I also completely stopped working; she said the symptoms had to be stabilized first. However, my ailments got no better, and I was able to do less and less.
The physiotherapist taught me I was not breathing correctly, in fact I was constantly hyperventilating. I learned that my fight-or-flight-system kept on going in overdrive, preventing me from relaxing. I was given breathing exercises for this.
That was nice and made me feel calmer, but every time I did “too much”, I had a major setback and ended up bedridden for a few weeks. I got really scared. My world became very small. I was no longer able to do anything around the house or with the children. I was very sad they had to see their mother like this. I left home only to go to the GP, the physio or the pulmonologist (who could not find any abnormalities, by the way) and even that was taking up too much energy.
Then, at some point, the physiotherapist told me she had to stop treating me because my symptoms remained so severe there was nothing to build on. This was devastating to me, although I tried not to let myself feel it. I tried some Chinese herbal treatment and massages, but they didn't help, in fact, all they did was make me worse. I started looking on 'Marktplaats' (something like E-bay) for a wheelchair because I could no longer go for small walks without being bedridden for three days afterwards … By now I assumed I had Chronic Fatigue Syndrome (CFS). Because earlier in life, I had also had a 10-year period during which I was terribly fatigued and suffered from flu-like symptoms for about a week every two months after I had done "too much". The doctor said this might be possible.
It was in this period that I hooked up with a fellow Long Covid sufferer with whom I exchanged experiences. This gave me a lot of support.
In early June 2021, she sent me a podcast that completely changed my life.
It was a conversation between psychotherapist Nicole Sachs and someone named Lieke from Amsterdam, who had completely recovered from long covid after 11 months by paying attention to her emotions (anger, fear, shame, etc.) instead of her symptoms.
I realized there was nothing spectacularly wrong with my body (as with Lieke from the podcast), and for the first time I was confident that I could recover too. That same day, 80% of my symptoms disappeared. It was amazing. My fear of never getting better had kept me from getting better!
The next day I delved further into the method and started writing about my feelings. My neck locked up, and my back started hurting a lot, but I persevered. I knew now this was my brain trying other symptoms on me and I was not going to listen to them anymore. I gently started moving again, cycling the e-bike for five minutes a day and the pain went away after two days.
I now concentrated on the fear that had started Covid-like symptoms in the first place. Particularly the thought that I would not be able to combine my children's home education with job, which was now also taking place at home. I had feared I would not be able to do that perfectly. And perfectionism was one of my survival strategies after traumatic childhood experiences, including a father who died when I was young and suffering from sexual and mental abuse in my teens.
I started reading Dr. Sarno's and Nicole Sachs' books and totally recognized myself in them. Two weeks later, I had gotten rid of 95% of my symptoms. I then started on the Mind Body Program by Dr. Schubiner which has been tremendously insightful. Now, only the tinnitus is still there. I have every bit of confidence that this too will eventually disappear.
The difference between how I was a few months ago and how I am today, is indescribable. I'm back at work and doing everything again, and more. I also found out that my previous 'unexplained' physical complaints, such as: hay fever, back pain (scoliosis), shoulder, knees and hip pains, flu-like symptoms, CFS and migraines, were all related to stress and unprocessed emotions. I'm very happy that I now understand how body and mind interact. I found the connection. And I know now how to deal with stress, negative thoughts and emotions, whenever they come up again. That is by looking at them directly, acknowledging them and not pushing them away.
I truely hope my story will give you the confidence you need to overcome your symptoms and recover fully and completely.
My story is also published on: https://www.recoverynorway.org/2021/09/22/long-covid-recovery-esther/
PS. So then, in September 2021, after my daughter tested postitive for Covid, I also developed symptoms so I drove myself to the test facility - crying. I really did not want to get sick AGAIN. It really freaked me out. It turned out I did indeed have Covid (although being fully vaccinated). I was sick in bed for one day. Then, I got up and told myself that even though I now had this virus, there was still nothing fundamentally wrong with my body, my body could deal with this infection and I was going to get well completely and without any lingering symptoms. The next day, I started recovering quickly and within a few days I was totally fine again.