Living with long Covid: PTSD, body aches, hair and smell loss – ‘I feel fragile, like I’ve aged 20 years’

Living with long Covid: PTSD, body aches, hair and smell loss – ‘I feel fragile, like I’ve aged 20 years’

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 Cindy’s story.

Cindy, 57

Contracted Covid-19 in June 2021.

I have no idea how I got Covid because, like many others, I was mostly working from home and was very careful with sanitising and wearing a face mask. I made my family shower if they went out and we sprayed our shoes and deliveries with disinfectant if they went to the other side of our gate. My infection started with a cold and I went to see my doctor. I was diagnosed with an upper respiratory infection and given an antibiotic, but my symptoms worsened and on 13 June 2021, I tested positive for Covid-19. 

The next 10 days were a blur. I recall the paramedics being called at one stage. My lips were black, but my oxygen levels were not low enough to be admitted to the hospital. The hospitals were full at that point anyway. I honestly don’t know how I survived. I had also infected my son, my fiancé, and my mom. 

My mom is 77 years old, overweight, and diabetic, and she survived her infection. By then she’d already received her first vaccine dose and we all came to the conclusion that that’s what got her through the worst of it because she was at the top of the list of those at risk of severe Covid and she hadn’t struggled the way I had at all. My fiancé was hospitalised and spent seven days in the ICU.

long covid

Image: Supplied

I must have got up and changed my pyjamas at some stage because they were different. But I do not recall eating, drinking or washing, but I think somewhere I did some of these things. I lost 15 kilograms in just over 10 days because I lived on ice, according to my family. I also had incredible hallucinations. We have a Yorkshire terrier and a border collie in the house, and to me, the Yorkshire was the same size as a border collie. One night I remember lying in bed and my whole room seemed to be covered in polka dots and my hands looked like lettuce leaves.    

When I eventually “woke up”, I was extremely weak. I couldn’t taste or smell; I was coughing, and my chest was tight. I couldn’t walk from my bed to the lounge without assistance. I couldn’t operate my cell phone and telling the time was confusing – I didn’t know what a clock was. People’s names and details were hard to recall. The TV was too bright and the volume was too loud. The brain fog afterwards was intense for a few days, but it simmered down quite quickly.  

And so my journey to recovery began… 

Fear, anxiety, and PTSD

The most daunting symptom to overcome was fear. My body endured the worst illness I’ve ever had and every day I feared I’d get new symptoms.

I developed panic attacks because the thought of still dying was not out of my mind.

I stopped sleeping in my room because I was anxious. Eventually, I moved back to sleeping in my room but we completely changed the room around. I couldn’t have it the way it was because it felt like a death hole.  

The panic attacks stopped about a month later but because I have underlying PTSD (post-traumatic stress disorder) and constant fear, any small symptom seems like something massive. So, for example, if I get a headache I’d think there’s a clot in my brain. During my infection, the light also affected my eyes terribly, so when I shut my eyes, I’d experience flickering. Now, when I see Christmas lights or any twinkly lights, it takes me straight back to my illness. I’ve got this mental association and it’s horrible.  

Visiting my doctor

Blood tests were done and it was discovered that I had Covid pneumonia and that I had clots. Immediate action was taken and I was put on blood thinners. I also had X-rays done. I got a picture taken of my lungs on day 10 of my infection. That’s when my doctor told me I had Covid pneumonia. I had to wait a month for my second X-ray. When you see the comparison between the two X-rays, you won’t believe that they’re the same pair of lungs. The first X-ray is really just two black sacs, and on the other one, you can even see my ribs. 

I recall days that I could not feel my feet. I expected them to be blue but they looked normal. I struggled to eat and drink as, for the most part, I could not taste and smell, so it felt like a pointless exercise. I lost more weight. My taste and smell have still not returned completely. It kind of ebbs and flows and some days are better than others.

Last week, I could smell my fiancé’s deodorant after three to four months of not being able to smell it. I’m doing smell training where I smell very strong smells, such as essential oils – it stimulates my sense of smell and while the progress is slow, I can feel that there’s been an improvement. Previously, I couldn’t smell any household cleaning materials. Now, I can at least get a whiff. I smelled things recently that I hadn’t smelled in months and I cried. 

It appears to be silly but smell and taste are such a big part of our joy, pleasure, social experience and happiness.

Body aches

I used to do a five-kilometre walk in the park regularly or play tennis. I can’t do any of that at the moment. When walking around in the shopping mall, I have to walk a bit slower than I did before my Covid infection. Fast forward two months, and I’m starting to believe that just maybe I’ve beaten this thing. My breathing is normal but exercise in any form is extremely difficult. My heart rate is erratic. My Fitbit shows me waved graphs of how my heart rate goes up and down. 

Body pains have become a daily thing. One day it’s my neck and back and the next it’s my arms and legs. It’s truly hard to talk about the myriad of symptoms your body experiences without feeling that people are wondering about your mental health. And you can’t live on pain medications, so you’ve got to try the more holistic stuff like meditation. I have an app on my phone and I do breathing exercises where I concentrate on my breath – it’s a form of meditation. It gets me to go to sleep calmly.

When I wake up with body aches during the day, I do the breathing techniques instead of trying to take too many painkillers. I’m trying hard to fill my time with healthy stimulants like music, yoga, supplements, and personal interaction. My heart rate is recovering and I’m breathing pretty well. 

But I feel like I’ve aged 20 years. I can’t stay awake past 08.30 in the evenings, where I could previously stay awake till midnight. But things have changed. I can barely get out of bed before 7 am, so heaven help me if I need to get anywhere by 8 am.

Coping with hair loss

I also started to experience what I called pinpricks on my head. A week later, my hair started to fall out. I had extremely thick hair and it started falling out in handfuls. It’s been so bad that I had to get a wig. I look like I’ve had chemotherapy. I had blood tests done because of it, and my thyroid, sugar, kidneys and iron levels were all healthy and normal, yet it hasn’t stopped my hair from falling out. 

In about a week, I will finally look like a cancer patient. I just have a tiny little fluff of hair that isn’t more than a centimetre long. I’ve spent a stupid amount of money on treatments and it’s done nothing to stop the shedding.  

I make jokes about it to hide the fear again of having no hair – it feels like it could become a real thing.

There’s a condition called telogen effluvium. It’s a condition that’s not necessarily linked to Covid, but to viral infections – which Covid is. And in severe cases, you lose all your hair. So your body is trying to look after all your vital organs, and the last thing it worries about is your hair. It explains what I’m experiencing.

It’s amazing how many people have got long Covid and don’t talk about it. Suffering in silence only creates more stress for yourself because you actually don’t know what to do and where to go. I’ve definitely got PTSD and I sought counsel. I speak to a coach and they help me with my triggers, and that’s helping me through this ordeal.

A changed personality

My whole personality seems to have changed because I feel quite fragile, whereas previously I was really gung-ho about life and very energetic. I was the loudest one at the party. Now, I’m not even at the party. My emotions are raw. I’m a self-diagnosed recluse. I don’t want to go out anymore – I’m just too afraid. I don’t want to take the chance of getting that sick ever again. I’m having a tough time and I don’t want to socialise and go out to dinner.

I work in the marketing sector and my life revolved around entertaining, hosting, and events. Now, I don’t want to be there. I work 100% from home. I got my second vaccination on 8 October and I’m trying to keep myself calm and maintain a good internal dialogue.

I weep at the losses and grief that other people are experiencing. My respect for those suffering not only with long Covid but with other symptomatic diseases has grown enormously, and I want them all to know they are heroes in my eyes.

READ | Living with long Covid: ‘I survived the illness, but the life I knew was snatched away from me’

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