What is Long Covid?

Long Covid is used to describe signs and symptoms that are experienced for longer than 4 weeks after first contracting the virus. When these symptoms continue for more than 12 weeks, this is known as COVID-19 Syndrome. It can affect your whole body, and your symptoms can change and come and go over time.

Many people that have developed Long Covid had no existing health conditions as we discovered when contacting the Long Covid Support Group.

Christina, aged 51 from Manchester contracted COVID-19 back in March 2020. At the time, Christina was fit and healthy, she had a demanding sales job where she often worked 14 hour days, she played tennis 3-4 times a week and had an active social life. So like most of the younger generations, when Christina started showing symptoms of the virus, she expected to be ill for a week or so, get better and carry on with life as normal. Unfortunately for Christina, this has not been the case.

Although Christina managed to avoid being admitted to hospital, she was bedridden for 3-4 months as her body succumbed to the chronic fatigue syndrome that most Long Covid sufferers experience.

Christina lives alone and with Coronavirus restrictions in place, no friends or relatives were able to come to her aid during those early months of her illness. This meant that Christina had to adapt her way of living, crawling from room to room, pulling herself up on pieces of furniture as the tiredness was so debilitating she was often unable to stand. Frequently, a choice had to be made between cooking a meal or having a shower, there was not the energy to do both. At one point in her recovery, Christina didn't shower for 10 days.

Fourteen months on from first falling ill with Coronavirus, Christina still experiences chronic fatigue, brain fog and breathing difficulties. While she still feels incapacitated, some days are now manageable. Although she admits that the severity and longevity of her condition has altered her perception of what is bearable. The mental battle has also been extremely difficult. Christina is very up and down.

There is light at the end of the tunnel though as Christina feels there has been a slight improvement in her health, but recovery has been at a snail's pace and she has now not felt healthy for 14 months.

Emily, a 30 year old primary school teacher from Lincolnshire contracted COVID-19 in December 2020. Pre-COVID she had a range of hobbies; cheerleading, daily yoga sessions, working out at the gym and attending aerobic classes accompanied by a healthy diet and walking everywhere. She was young, fit and healthy aside from mild asthma.

“The two weeks when I actually had Covid I couldn't breathe very well and I didn't realise that my lungs were blowing up causing intercostal muscles in the left-hand-side of my ribs to tear. It wasn't until my voice started to change that I went to the doctor's and said I was struggling to breathe. He gave me a course of steroids, 6 a day for a week which calmed the inflammation down.  Since then I have spent months trying to recover. I've been through really depressed stages, thinking I wouldn't get better, which I'm now on antidepressants for. 

My symptoms can vary from day to day, if I go from the top of my body to the bottom of my body: my hair is falling out, my ears are constantly ringing with new tinnitus that I have. I can all of a sudden really struggle to breathe; the Long Covid clinic says it's dysfunctional breathing. The muscles in my side have taken a long time to heal; I didn't really move for two months to try and rest and recover them.

Photo of woman and man on beach

My sternum has muscular skeletal bruising and that's the pain that's not really going away and causing my breathing problems. It almost feels like my body is in a state of constant disrepair. At about 2 o'clock in the afternoon, I have to sleep because my body just feels completely worn out. I also suffer from brain fog which feels like your brain has been dipped in treacle or some people have described it as having a cloud around your brain that you can't get rid of.

The way I've tried to cope with this is meditation, I used to do 45 minutes a day and am now doing 10 minutes a day, it seems to be helping. In terms of getting better, the only person who's helped me, is me! And the Facebook Support group. I've also got a really good support network from family and friends and work colleagues. After reading about other people's journeys, I realised I had to tell people how sad I was.

I need everyone to understand that this isn't an illness that you can fix with chicken soup, it's debilitating and lonely and the only Doctor who has helped me was the Doctor who told me I could have a month off. This helped me to see that it was serious and I needed to step back from work and take some time for myself. In this month I've started going to the osteopath who has helped enormously and I've started to do 5-minutes yoga in the morning with osteopath exercises and rest. Then in the afternoon, I take a short walk around my street and come back and do some more osteopath exercises and this routine along with my new positive attitude that has come from reading other people's stories on the Facebook support group or just generally being with friends and family has made an enormous difference.

There's a lot in the media that can scare Long Covid people, telling everyone they won't get better or that it's something that we don't know enough about, which can make you feel really lonely. But through the Facebook group and taking some time for myself, I've realised that I didn't die and I'm lucky to be alive.”

Your COVID Recovery

The NHS has launched a programme called Your COVID Recovery. This is an online rehabilitation platform designed to support your physical and emotional recovery if you have ongoing COVID-19 symptoms. You need to get a referral from a healthcare professional, such as your GP, to access this programme.

Through Your COVID Recovery, you can get advice and support from various healthcare professionals on your mental health, physical activity, managing your symptoms and diet. You’ll also be able to track your symptoms and set your own goals.

You might also find it useful to visit the Your Covid Recovery website, which has information and advice on a wide range of Long Covid symptoms that can affect your body and mind, as well as advice on what to do if you already have diabetes or cardiovascular disease.

How can the Hidden Disabilities Sunflower help?

Many Long Covid sufferers would not have considered themselves to have an invisible impairment before the pandemic and may now find themselves in need of some extra support, understanding or a little more time. When we spoke to Christina, she told us that she now struggles to lift items onto the conveyor belt at the supermarket but doesn't really want to explain to a stranger that she has Long Covid when asking for help, this is where the Sunflower can support you. We have created a Long Covid ID card to discreetly show you are living with this condition, to be word on the Sunflower lanyard. You could also create a 'Make it yours' card, to add your personal details, which can also include your Long Covid condition along with up to five helpful icons, such as the ones that relate to fatigue.

Support groups & further information

The support group that we consulted with for this article is available to join on Facebook at: https://www.facebook.com/groups/longcovid

If you have a child who is suffering from Long Covid, or are concerned that your child may be showing symptoms, there is a dedicated website offering information and support: https://www.longcovidkids.org/


*Source: Employers' Forum on Disability