Sussex people speak out on the devastating effects of Long Covid

Sussex people have spoken about the debilitating effect of living with Long Covid and how they are still facing uncertainty

Thursday, 21st January 2021, 7:00 am

Long Covid, which can cause symptoms weeks or months after the infection is gone is something we have steadily become more aware of, but so little is still known about it and the outcome on those affected.

Initial findings from the King’s College London Covid Symptom Study in June showed one in 10 people were still suffering symptoms three weeks or more after their illness began, while the Department of Health and Social Care said 10 per cent of people with mild Covid still had symptoms after four weeks.

We have been speaking to people across the county, some of who were diagnosed with Covid-19 back in March and April last year and who are still suffering the debilitating effects of the condition today.

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And some had a stark warning to people – being younger is no guarantee of avoiding the devastating effects of the virus. All want to raise awareness of long Covid and emphasise that it is very real.

Justin Howard, 37, from East Preston, contracted Covid over the Christmas period. It affected his entire family and resulted in a six-day stay in Worthing Hospital after he started struggling to breathe.

Justin said: “I started to feel ill over Christmas and at first it felt like a cold. By December 28 it had got progressively worse and I was feeling really tired.

At around 2am on New Year’s Day I was struggling to breathe. I have the latest version of the Apple Watch, which can give blood oxygen readings and this alerted me to low blood oxygen. My wife and I followed the guidance on the 111 website and that resulted in us calling 999. An ambulance came and the paramedic decided I needed to be in hospital.

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“After a battery of tests they decided that I had Covid pneumonia. I was given 11 litres of oxygen per minute and also put on a machine which provides oxygen and opens the airwaves. I avoided being put on a ventilator but several times the critical care team were looking at that option.

“Then suddenly I seemed to improve overnight and was discharged home to continue recovering.”

Weeks later Justin is still affected and has 50 percent lung capacity.

He said: “The doctors believe that at my age it should take two months for my lungs to return to normal capacity, but they can’t give any guarantees.

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“I feel tired and exhausted. It is not so bad in the morning but by two or three in the afternoon I am just laying on the sofa sleeping. I go to bed at 9pm every night.

“I live in a three-storey house and going up the stairs I have to take breaks between floors. Just having a shower in the morning tires me. I have a shower and it feels as if I have gone for a run.”

Justin says that he wants to emphasise how real the dangers of Covid are.

He said: “I still read all the time on social media people saying that it does not really exist or that it is no worse than a cold. It is true that some people have mild symptoms but you really don’t know how it is going to affect you. I am in my 30s and it totally floored me. On a four-man ward two of the other men in there with me were in their 30s and one had run the London Marathon.

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“I still don’t know how I got it. I have been working from home since March and have not really had cause to go anywhere. I was careful and followed all the rules to the letter but I still got it.

“I have tried to have conversations with people on social media who say this doesn’t exist , but most of the time they don’t want to listen to science or facts. They are in an echo chamber of people with similar views.

“You really don’t know how it is going to affect you. My daughters, aged six and four, were not badly affected and my wife only had mild symptoms. Two older relatives who were with us at Christmas were not affected at all and tested negative.

“When I was still in hospital, but feeling a little better I would look out of the window and you could see construction workers sitting in van, not distancing and acting as if everything was completely normal. There I was looking out of the window of a Covid ward at people who were not following the rules.”

Pauline Corey, 71, from Worthing, said: “I was ill for ten days in April. I didn’t have the typical Covid symptoms so I didn’t realise what was going on. No tests were available at that time anyway. It was after months of feeling very unwell that someone suggested I may have long Covid. I’ve never had it formally diagnosed but my symptom picture ties in with the many thousands that belong to the group I belong to so I can only imagine that’s what I have.

“I hope we can raise the profile locally of this awful condition, which varies hugely in length and severity with us all but, for many, has gone on for nine plus months and is completely life arresting in many cases, as it has been with me at times.

“Despite my age, prior to this awful illness I was fit and very active in my community, working closely with Adur and Worthing councils as well as many local community groups, co-organising huge events locally so this has totally changed my life.

“There is a Facebook page for those facing long Covid and there are more than 33,000 people connected to this network.

Eddie Howland, 50, from Burgess Hill, spoke of how he is still suffering from the effects of Covid six weeks after contracting the virus. He said: “My wife brought it back from the place she works on December 8 – and I started to get symptoms the following day. Our nine-year-old son was also infected.

“It started with what felt like the start of a cold. At first I was able to help my wife but then the cough got worse and worse. I couldn’t sleep. I was being racked by the cough and in pain with it. The doctor prescribed antibiotics, which did help reduce the symptoms and by Christmas Day I was feeling a bit better. When the coughing was really bad I decided to sleep downstairs on the sofa to give them a break from the coughing but it was impossible to get comfortable. I started to feel better than I did when I first had it but I cannot shake off the tiredness and lethargy.

“I went back to work and they sent me home straight away as they could see I didn’t look right.

“I try and do some things and have a potter and if I am sitting down I feel alright, but if I walk up the stairs my legs start to shake and I feel really tired and lethargic.

“At first you think this will last for five days to a week but then it goes on and you start to hear about people who were diagnosed back in July or August and are still having problems and symptoms. It is slowly getting better but it is taking a very long time.”

Tim Nicholls. 73, from Worthing, said: “I had Covid at the beginning of May. My highly developed sense of taste and smell vanished suddenly whilst I had the fever. Eventually I could discern sweet, salt and sour. My background for the greater part of my career was in the wine trade and it seems all those years of palate education have been destroyed for good.

“A very faint taste perception comes and goes but some things like cucumber and peppers now taste a revolting chemically taste. Although I can drink coffee, the smell of freshly ground coffee is disgusting.

“The after-effects crept up on me. It left me with disturbed sleep, an over-active bladder, problems with my left hand and sometimes vision problems. I also suddenly get tired and have to have a nap, although this has gradually improved.

“The GP reckons I do have long Covid, despite not being that ill with the virus itself, just fever and cough. I never retired to bed. I continued to work in fact.”

Liz Morrison, from the Horsham area, said: “I had Covid the week before lockdown one. I was convinced it was just an awful chest infection but when I couldn’t physically stand or stop coughing long enough to speak I had to concede and ring 111.

I kept in contact with my doctor and towards the end of April with no real significant improvement. He prescribed steroids. Unfortunately after a week realised I was having a nasty reaction. My weak Covid knees locked and I went from not being able to stay awake to not sleeping at all. The pain from my knees was unbearable.

“Whilst I turned 40 in July, I considered myself to be pretty fit and relatively healthy before Covid. I’m a size 12. I run a furniture and electrical shop so my job involves lifting sofas etc. as standard.

“This long Covid comes in waves. I had a sinus infection and it was like week-two Covid all over again.

“I’m tired and I want to know when this stops. I was healthy and strong and now I’m not. The effort it takes to do normal everyday tasks is all-consuming.”

One woman who suffers from long Covid has spoken on how life-style changes helped.

Mary Burgess, 54, from Emsworth, contracted the virus back in April and was diagnosed with long Covid by her GP.

She managed to improve the symptoms she was suffering by making some positive lifestyle changes.

She said: “I had coronavirus in April. I recovered but it affected my heart, causing me to have an irregular heartbeat that was too high even when I was resting or sleeping. I was able to monitor it using an Apple Watch, which told me that it was not right.

“I was feeling tired and suffering from headaches. I also got tinnitus, which is quite common with long Covid.

“In October I contracted blood poisoning and was told by the doctor that this can happen when the gut bacteria is affected.

“I started to move and get more active, going for long walks with my dogs to build up my fitness and it really started to work.

“I also improved my diet, eating probiotic food and lots of fruit and oily fish.

“It really made a lot of difference. I feel a lot better now. I don’t have so many headaches and my heart rate is better.

“Before I made the changes I had gum disease on two of my teeth and the dentist said it would take two months to cure.

“The dentist was amazed that it had virtually gone in no time since making the lifestyle changes. I am worried about getting it again so want to keep myself fit. I would encourage anyone to make some changes. The important thing is to keep moving if you can.”

The NHS has said symptoms of Long Covid can includ mExtreme tiredness (fatigue); Shortness of breath; Chest pain or tightness; Problems with memory and concentration (‘brain fog’); Difficulty sleeping (insomnia); Heart palpitations; Dizziness; Pins and needles; Joint pain; Depression and anxiety; Tinnitus, earaches; Feeling sick, diarrhoea, stomach aches, Loss of appetite; A high temperature, cough, headaches, sore throat, changes to sense of smell or taste and rashes.

The NHS advises that many people feel better in a few days or weeks and most will make a full recovery within 12 weeks. But for some people, symptoms can last longer.

The chances of having long-term symptoms does not seem to be linked to how ill you are when you first get coronavirus.

People who had mild symptoms at first can still have long-term problems.

Advice from the NHS is that you should contact a GP if you worried about symptoms 4 weeks or more after having coronavirus.

Your doctor will ask about your symptoms and the impact they’re having on your life. They may suggest some tests to find out more about your symptoms and rule out other things that could be causing them. This could include blood tests and chest X-ray.

You can find out more at www.nhs.uk/conditions/coronavirus-covid-19