Living with long Covid: Brain fog, hair loss, breathing issues – ‘You feel you’re going crazy’

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Thousands of people worldwide are suffering from the lingering effects of Covid-19 – from severe fatigue and struggling to breathe to coping with memory or hair loss. Health24 spoke to a number of long haulers. This is Rochelle's story.

Rochelle, 40

Contracted Covid-19 in May 2020 and August 2021

With my first infection, I ended up in hospital for observation because my vital signs and iron levels were extremely low (I’m anaemic). I didn’t have any comorbidities. It started off as a mild infection. There were no breathing issues. But as the infection progressed, I felt dizzy and had headaches. One day I was fine and the next day I was not. And then I lost my sense of taste and smell. 

One night, I started feeling really weird; I couldn’t even lift myself up and couldn’t breathe. I was taken to hospital where they ran tests and kept me overnight. I tested positive for Covid. I was in denial that I could get the virus because I’m a healthy person. I don’t smoke or drink alcohol, and I was so sure I was safe because I always sanitised and wore my face mask. 

During my hospital stay, the dizziness and breathing got worse. It had already been two weeks into my Covid infection. One evening, the patient next to me actually woke me up and said, "Rochelle, you need to wake up because you’re not breathing and I can hear you." I was in a daze, totally confused about where I was and what I was doing. My iron levels and breathing and oxygen levels were extremely low. I was put on a drip. But I think my body didn’t accept it and I actually got sicker. At this point I was Covid-free, but getting sicker every day. 

It got to a point where I didn't want to sleep because I was afraid I wouldn’t wake up.

My oxygen levels just weren’t improving. And then they put me on a ventilator. At one point, I was in the High Care unit and my family said their goodbyes because they thought they were going to lose me. I got panic attacks because I didn’t know what was happening – one day I felt healthy and the next day I couldn’t even walk or sit up. And I couldn’t be there for my children. Luckily, I could speak to them via calls. But they were fearful because I was in hospital for three weeks and I didn’t have any answers.

From being extremely healthy, I ended up in hospital having to wear a catheter. I couldn’t even brush my hair or teeth because of the breathing difficulty. I just went downhill. After about a month and a half in hospital, I was discharged. I wanted to be discharged because I felt like I was being kept behind. I told the doctor I needed to go home to self-rehabilitate. I felt like I wasn’t getting better in the hospital. At that point I was in a wheelchair. I was advised to stay off work for at least another month. My breathing was still very heavy. I felt a bit asthmatic even though I never had asthma. I tried to do exercises like walking and hiking, but I couldn’t because it was just … sore. As much as I wanted to do more, I couldn't. 

long covid
Image: Supplied

I still couldn’t smell or taste it after almost two months since being discharged from hospital. The worst thing that happened was that every morning I would wake up, my whole bed would be full of hair. And I had a lot of hair prior to my Covid infection. I’d get to work, and people would tell me, ‘Oh your back is full of hair’, and then they’d help me remove it from my clothing. By December 2020, about 70% of my hair was gone.

Around this time, I got my sense of smell back and I was so excited. And then before Christmas, I started getting my sense of taste back, but not completely. But these senses would go away and return – it was on and off. The dizziness remained. And the breathing difficulty is still the same. I’ve never really recovered from that. I also have pins and needles. It’s worse at night because when you lie down, you’ll wake up with a dead arm or an ice-cold leg and you first have to recover from that. 

I contracted the virus again in August 2021. My mom visited me and she had a very bad cough. I thought that she’d perhaps just had a chest infection. She was always concerned about my health after my first infection.  I was already suffering from my long Covid symptoms so I didn’t think I was reinfected. But then my mom couldn’t breathe and had to be admitted to hospital. She tested positive. And then immediately I was tested, and it was confirmed I was positive. My mom passed away from her Covid infection. It’s been very tough.

The worst thing that she was afraid of would happen to me, eventually happened to her.

I couldn’t even do much for her because I had to be isolated. But the doctor called me to say she was ready to come home. She was taken off the oxygen. She was walking and was doing fine. But it was advised that she be sent to a rehab facility in Cape Town to complete her isolation period there. I thought it would be a good thing for her, so she was transferred – the ambulance took her directly from the hospital to the facility. The doctor said she couldn’t breathe and that they tried everything while she was at the facility. 

I went there the next morning to collect her body and things. There were about five to six cars, and everyone was just handed a bag with their loved one’s belongings by the security guard. There weren’t any doctors I could speak to. It was such a cold experience. 

Two years for close to full recovery

Because of the severity of my first infection, I was told to look at about two years until I reached around 95% recovery. 

I feel like I’m going crazy. I also suffer from brain fog. It has had a huge impact on my work. When I say that I forgot about something, or that it slipped my mind, I worry that people think that I’m uninterested or not focused. 

It’s hard to explain that this is actually what I’m going through and that it’s not done deliberately.

At my mom’s funeral, some people didn't want to use our glasses because they thought I could still infect them with the virus. They asked if we had throwaway paper cups. It felt like people were making the Holy Cross sign and saying, "Stay away from me." I think people just need to be educated more on this. 

Life wasn’t perfect before the pandemic, but at least it was "normal’" And now there’s been a whole shift in my life and I have to live very differently. My family was highly impacted. My kids have panic attacks if people come close to me or if they cough next to me, because they thought they were going to lose me. And I thought so too. Because I was exhausted. I couldn’t fight it anymore. 

*Many people suffer from the long-term effects of Covid-19, even many months later. If you are one of those people, and wish to share your experience, let us know, and your story can be told in our Living with long Covid series. You are not alone. E-mail your stories to zakiyah.ebrahim@24.com

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