Living with long Covid: 'On my worst days, it feels like I’m stuck in a prison'

accreditation
0:00
play article
Subscribers can listen to this article

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

Abstract black grainy paper texture background or
Photo: Supplied

Kathryn, 43

Contracted Covid-19 in December 2020.

I was 43 years old and was considered super fit and healthy prior to getting Covid-19 – I was training for the Comrades Marathon. I hadn’t been a high-risk person and have gone from being extra fit to not being able to walk 200 metres without getting wiped out and breathless.

READ | Living with Long Covid: Telling the stories about the battles with long-term symptoms

Six weeks after recovering from active Covid, I went to the doctor who told me I should actually have been hospitalised during my infection. I was referred to physiotherapy for post-Covid airway restriction, but I'm still not any better.

I went for my first run after five and a half months. I told myself, “I’m going to see if I can run the way I used to.” But my heart rate shot up and I sounded like an asthmatic. I was wheezy and breathless, just because I was trying to run the way I used to run, so clearly, my lungs are not that great anymore.

I also got random high temperatures for weeks after recovering from Covid, which was awkward because that means you can’t go anywhere where they take your temperature. I've been excluded from certain activities – even though I explained that my infection had passed and I was just a "long hauler". People are afraid.

I'm also battling horrible fatigue. It’s getting a bit easier, but I have good days and bad days. I also have the most horrendous muscular joint pain and by the time evening comes, I can hardly stand on my feet. I’m so tired all the time and I have when I just lie crying because I can't get on with my life. I go for a Neurobion injection every week to try and get some energy back, but the fatigue is awful – not to speak of the chest pain and shortness of breath.

Apart from having no energy, my hair has also been falling out – three months after the infection, I've lost about half of my hair. I’ve even had to go and see a gynaecologist because my hormones are so messed up. There have been all these odd things like my loss of smell that hasn’t come back properly. It comes and goes and it’s quite dull when it's there.

I can’t sleep properly and I never had sleep problems before. I wake up during the night and just can’t get back to sleep. Over-the-counter sleeping medications don't work. I’ve said no to antidepressants because I’m not depressed.

I went for counselling for post-traumatic stress which made me feel really silly, but the reality is that I got traumatised by the five days I was super sick with Covid, and my children had to fend for themselves. I just had to process the situation, and then there was the guilt about surviving while other people didn’t.

In June, my doctor noticed my right hand trembling and referred me to a neurologist. He said the tremor was a neurological symptom, and that it was likely due to the trauma of Covid infection. I was put on Lyrica, an anti-seizure medication, and I've been struggling a bit with really bad headaches.

On my worst days, it feels like I’m stuck in a prison; like I’m in a cage not knowing what to do. And people who don’t understand say to me, "Oh come on now; it can't be that bad." The pressure to 'bounce back' causes anxiety when the tiredness and brain fog is so debilitating.

When I saw the counsellor and cried, she told me that I'm still really sick and that I needed rest. But I can’t keep resting. It’s affecting my life and work. All in all, I’m just not well. And it’s very hard because I think people have become desensitised to it and the doctors don’t really know what to say. 

But there must be some marker; there must be something in me … It’s been described as a fire that ravages through your body, causing inflammation. They obviously don’t know enough. We [long haulers] feel a bit like guinea pigs, but I support the doctors. It must be hard for them too because they don’t have the answers. I’m not angry that they don’t know what's going on.

I’ve run out of my medical savings and I don’t know if there’s much that the doctors can do at this stage. I'm anxious and frustrated because I can't get on with my life. I’m desperate to "live". I want to run. I want to have energy. I am also desperate to have blood tests done, but I just can’t afford it now. Perhaps I could take part in a trial … Let me be a lab rat. Anything is better than sitting, not knowing what's going on and being frustrated all the time.

*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

*For more Covid-19 research, science and news, click here. You can also sign up for our Daily Dose newsletter here.

READ | Long Covid: More than 200 symptoms identified, many with a negative effect on work life

READ | If you’re living with long Covid, a Stellenbosch University researcher needs your help

READ | Like a 'blanket of fatigue': Inside Groote Schuur’s long Covid clinic

We live in a world where facts and fiction get blurred
In times of uncertainty you need journalism you can trust. For only R75 per month, you have access to a world of in-depth analyses, investigative journalism, top opinions and a range of features. Journalism strengthens democracy. Invest in the future today.
Subscribe to News24
Voting Booth
Have you entered our Health of the Nation survey?
Please select an option Oops! Something went wrong, please try again later.
Results
Yes
30% - 9648 votes
No
70% - 22699 votes
Vote