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Long Covid: Dr Sara Kayat discusses impact on children

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Data released by The Office for National Statistics (ONS) back in January 2022 estimated that a total of 1.3 million people (two percent of the population) are experiencing self-reported long Covid symptoms. For some people, recovery from Covid can take anywhere from a few days to 12 weeks, but for others, symptoms such as shortness of breath, chronic fatigue and heart palpitations have crippling and life-changing effects. For hospital porter Garry, is there a non prescription substitute for prednisone who also spent 20 years in the army, long Covid is the “most challenging thing” he has ever had to face.

Speaking exclusively to Express.co.uk, Garry explained that when he first caught Covid, around December 12 2020, he started to write a diary, which captured his life-changing symptoms.

“My days of being able to take a full breath it seemed had gone,” he explained “Chronic fatigue had kicked in, the very thought of getting up crossing the landing to use the toilet, such a simple task before, now filled me dread. I made sure my will was up to date, as I feared the days that lay ahead.

“I had sweats, an irregular temperature and headaches like I have ever had before. Heart palpitations, heart flutters for no reason and my heart rate would rise even at full rest. There was no need for it to do so, this wasn’t normal. This was my body reacting to the Covid virus.”

As a father-of-two, Garry spent most of his days during this time asleep, sleep that was plagued with “horrific” dreams that he said stopped him from resting.

“There were times my wife would come in to check on me to make sure I hadn’t passed away in my sleep,” Garry added.

“I’d gone from a loving husband and dad to a living corpse. My eyes were mine, this broken body was mine, I didn’t recognise myself. Laying down, lost in my own body.”

After about eight weeks of torment from the virus, Garry saw no signs of recovery and after speaking with his GP was shortly diagnosed with long Covid, a diagnosis that he saw as a “weight off [his] shoulders” as he now didn’t feel as though he had to justify his actions, or lack of.

Over a year since Garry was first infected with Covid and things have only slightly improved for the man who at one point would walk at least 10 to 15 miles a day. Now he struggles with the 600 metre school run and described climbing the stairs as like climbing Mount Everest.

He added: “Irrespective of my two decades in the military, this is the most challenging thing I’ve ever personally faced. The word spontaneity has no meaning now. My respiratory symptoms are persistent, however they have improved by having a strict breathing exercise pattern and pacing.

“The fatigue at times felt like it was at cellular level. I couldn’t concentrate during the worst of it for more than a couple of minutes, bringing on confusion, fatigue and headaches. Rest was literally the best.

“I used to be an avid reader, but I couldn’t focus on a book long enough to get through a page, sometimes a sentence was enough, it was all I could handle. The cognitive fatigue was just as bad as the physical fatigue. There was no respite, but to stop, rest and give my brain and body time to recover.”

As well as his physical health, long Covid has also had an impact on Garry’s mental health, especially as he tries to comprehend the impact his illness has had on his two children: “My four-year-old son would climb onto me and give me a kiss on the chest, and tell me he wanted to make me better.

“Even when I was on my own, bed bound in the earlier months, I would cough and I could hear his little feet running across the landing to me, in what was his room away from the family. I had that feeling of waking within a dream, but when I did open my eyes I realised that I was still in this long Covid hell.”

The NHS explains that symptoms of long Covid can include, but are not limited to the following:

• Extreme 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.

For individuals like Garry who are suffering long-term from Covid symptoms, the health body recommends talking to your doctor who may be able to refer you to a specialist clinic for specific symptoms.

When asked how he has been supported, and anything that he felt was missing for long Covid patients currently, Garry replied saying: “I never expected to be given a tablet to take and be totally fine again. But when you’re living in this drawn-out waiting game, it’s so frustrating.

“I have had interventions such as respiratory physiotherapy for example, but I couldn’t manage the set time frame, so under the guidance of a physiotherapist the one hour session was reduced to three sessions a week, for 20 mins with a rest day either side.

“For brain fog issues I went to a neuro team referral, but by the time I spoke to them in their words I was doing everything right. All because I waited for months. I had to work it out myself and through a peer-led self-support and management group, which has been my life line.”

For many long Covid sufferers, the government’s “Living With Covid” plan, which saw the end of free lateral flow tests for the general public in England on April 1, has come too soon, as they are still living in the “nightmare”. On this, Garry added: “What needs to change, is for people to listen to those with lived experience, listen with an open mind and an open heart. This isn’t going anywhere, there is no endemic, look at the current infection rates, how many of those will end up with Long Covid?

“The best advice I can give to people is to reach out for help if you need it as you are not alone. Pace yourself. Accept your limitations, accept what you can do, not what you can’t do. I got my head around my diagnosis of looking at it like the grief cycle, however there was no denial, this was happening whether I liked it or not!

“Time will heal, let it. Rest, rest, rest and rest some more. Small victories, help. Take the time to appreciate what energy you have for the day. Procrastination was okay, if I can’t do it today , then I will try again tomorrow. What matters is that I am here. Groups and patient-led self-management programmes have really, really helped – LongcovidSOS and the Hope Programme for example.”

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