"I'm 25 going on 95": one woman's experience of life with Long Covid
“Covid might not have killed me, but it’s killed a part of me”.
Occupational Therapy student Daniella Taylor from Clayton-le-Woods wants to raise awareness of the debilitating after effects Covid-19 can have, even in young people.
The condition is a recognised result of a Covid-19 infection, which can set off post viral conditions like Chronic Fatigue Syndrome, ME, and can cause organ damage, heart and breathing problems as well as nerve issues.
Research is still ongoing in to Long Covid, and it has been announced that Lancashire is one of 12 areas in the country where a Long Covid clinic will be opened in coming weeks, as the NHS work to diagnose and assess those experiencing symptoms.
Daniella says she’s “25 going on 95” after her near-fatal battle with the infection last year, and has gone from being independent, happy and working, to virtually housebound with a host of serious physical and mental health problems.
She said: “Prior to me getting Covid, I was 25, I had a job working in a care home for people with learning difficulties, I was starting a university course in Occupational Therapy, I was very independent, and it’s all gone.
“Now I have to have social care in to help me clean my flat.”
She added: “I struggle to go to the shops now. I can’t go without having panic attacks and anxiety, and I definitely can’t go to a big shop.
“In the Asda near me, the bread aisle is right at the back of the shop and I don’t have the energy to get there.
“I’ve tried to go for walks with my cat on a lead and with my occupational therapist, but I can do about 10 minutes and then my muscles seize up and I’m stuck. I can’t explain it, but I’m so much pain and then I have to go to bed for the rest of the day.
“I’m 25 going on 95! I’ll be in a care home soon!”
Daniella also has to forgo simple pleasures in life, such as taking a hot bath, which can cause her heart rate to soar to up to 200 bears per minute.
She added: “All these things that you take for granted on a daily basis, I just can’t do. My mental health has deteriorated so much as a result.
“I can’t go for a walk, I can’t make myself a nice meal, and my mental fog is ridiculous. A lot of the time I’ll stop in the middle of a conversation because I’ve forgotten what I’m saying.
“Then I also have insomnia. I have only slept for about six hours in a few days. The techniques I’ve learned to deal with that in the past aren’t working and my eyes are stinging and puffy.”
Daniella has also suffered hair loss since her hospitalisation, a known symptom of Long Covid.
She said: “I’ve lost so much hair. It was thick and bright blonde, but now I’m pulling out five handfuls a day. It’s really thin on top, you can see my scalp.
“I feel l ke people are saying that’s the least of my worries, and yes I get that, but every time I look in the mirror and I see that, it’s upsetting.”
Daniella says she has no idea how she caught Covid-19 in October last year, after wearing full PPE at work and keeping to all regulations when in public.
She ended up being admitted to the Intensive Care Unit at the Royal Preston Hospital, where she was put in an induced coma twice, intubated and ventilated twice, was put on a CPAP ventilation hood and was given a tracheotomy.
Her family were warned that she was “very poorly” and might not survive.
But after weeks in a coma, under sedation and suffering from delirium from the intense treatment, she left hospital on December 1. She has since been back four times, once ending up on the resuscitation ward on blood thinners for a blood clot on her lung.
CT scans have also revealed that she has scarring on her right lung and th earliest cardiology appointment she can get is in May.
She said: “I have no idea how I got it (Covid) or why I’ve been so badly affected.
“I do have asthma, and I was shielding, but I wasn’t being furloughed and I couldn’t afford not to work, so I took a risk with my health. I think I took a risk too far.”
While recuperating at a family member’s house, Daniella said a telephone assessment for Personal Independence Payment’s from her previous mental health conditions rated her as being independent, and her payments were stopped. This is something she is now challenging.
She has also applied for a Covid 19 Hardship Fund from the University of Central Lancashire, where she is studying, and is eligible for food bank referrals.
Daniella says she wants to raise awareness of her condition after hearing of young people going to house parties and seeing social media videos purporting to show empty hospitals.
She said: “These TikTok videos - they really anger me. They’re probably filming the day patient areas. There’s no patients there because they’re all in ICU!
“Then I read about police having to break up house parties. What’s more important? A party that can wait, or your health? I’m 25, this can happen to young people too.”
She added: “People just don’t know how long it’s going to take for me to get better, and it’s so frustrating. I want to do things.
“The most disheartening thing is, before Covid, I’d built myself up to being in a really good place and I was happy. But this has set me back massively.
“People think I’m okay because I’m out of hospital, they think I’m okay because I haven’t died.”
Daniella was already receiving support from a psychologist for complex PTSD when she became ill with Covid-19 and says she’d be lost without their professional support.
She has also joined a Facebook support group for people with Long Covid, which she is keen to publicise.
She said: “A lot of people don’t realise these groups exist, but I have found a lot of support and love from people who are going through the same thing.
“It’s ok to feel frustrated and feel all these emotions. It helps me keep my determination, even though I can be up and down.
“I want to raise awareness that just because you don’t have Covid anymore, it doesn’t mean that you aren’t suffering still.”
Daniella is determined to put her experiences to good use in the future, and with her Occupational Therapy work, help support other people with the same problems.
Lancashire’s Long Covid Clinic:
People in Lancashire suffering with long Covid can now get help at specialist local clinic.
Lancashire and South Cumbria NHS foundation Trust are taking referrals from GPs for people experiencing brain fog, anxiety, depression, breathlessness, fatigue and other debilitating symptoms.
One in five people with coronavirus develop longer term symptoms. Around 186,000 people suffer problems for up to 12 weeks, the Office for National Statistics found.
The new centre will being together doctors, nurses, physiotherapists and occupational therapists to offer both physical and psychological assessments and refer patients to the right treatment and rehabilitation services.
Patients can access services if they are referred by a GP or another healthcare professional, so that doctors can first rule out other possible underlying causes for symptoms.
A spokesman for the Trust said: “Lancashire and South Cumbria NHS Foundation Trust is doing all it can to support the community with the impact of Covid-19.
“As part of a national project, and working in coordination with partners across Lancashire and South Cumbria, we have set up a Long Covid referral hub which GPs can access and LSCft is then working with a range of organisations and its own services to provide relevant support to each individual.”
What is Long Covid?
Long Covid is characterised by a constellation of symptoms, including – variably – shortness of breath, marked fatigue, headache, and loss of ability to taste and smell normally.
A relatively large study of 384 individuals ill enough to be admitted to hospital with COVID-19 showed that 53 per cent remained breathless at a follow-up assessment one to two months later, with 34 per cent having a cough and 69 per cent reporting fatigue.
Indeed, early analysis of self-reported data submitted through the COVID Symptom Study app suggests that 13% of people who experience COVID-19 symptoms have them for more than 28 days, while four per cent have symptoms after more than 56 days.
Perhaps unsurprisingly, people with more severe disease initially – characterised by more than five symptoms – seem to be at increased risk of long COVID. Older age and being female also appear to be risk factors for having prolonged symptoms, as is having a higher body mass index.
There are many reasons why people may have symptoms months after a viral illness during a pandemic. But getting to the bottom of what’s going on inside people will be easier for some parts of the body than others.
Where symptoms point to a specific organ, investigating is relatively straightforward. Clinicians can examine the electrical flow around the heart if someone is suffering palpitations. Or they can study lung function – tissue elasticity and gas exchange – where shortness of breath is the predominant symptom.
Rather harder to explore is the symptom of fatigue. Another recent large-scale study has shown that this symptom is common after COVID-19 – occurring in more than half of cases – and appears unrelated to the severity of the early illness.
What’s more, tests showed that the people examined didn’t have elevated levels of inflammation, suggesting that their fatigue wasn’t caused by continued infection or their immune system working overtime.
With so much having happened over the last year, we will need to tease apart which impacts stem from the virus itself versus which might be the consequence of the massive social disruption wrought by this pandemic.
What is clear, however, is that long-term symptoms after COVID-19 are common, and that research into the causes and treatments of long COVID will likely be needed long after the outbreak itself has subsided.
• Frances Williams is Professor of Genomic Epidemiology and Hon Consultant Rheumatologist, King’s College London. A longer version of her article can be found at https://theconversation.com/
Long Covid support:
Help and advice can be accessed at: https://www.longcovid.org/
A spokesman for the group said: "Anyone can develop Long Covid, any age or gender, physically active/fit and with no underlying health conditions.
"This can happen whether you had a mild to moderate initial illness and there isn't yet any specific mechanisms identified to be able to determine who will get it . This is what makes it so hard to treat and at best doctors can run blood tests looking for specific markers like inflammation and to rule out any underlying deficiencies etc but these often come back normal and therefore doctors are hard pushed on what to treat.
"We do know that any virus can set off post viral conditions like CFS and ME but we also know that Long Covid can also include organ damage, heart and breathing problems as well as nerve issues.
"Getting tests is hit and miss depending on your GP, many people in the support group report gaslighting and being told that their symptoms are caused by anxiety despite the BMJ issuing guidelines to doctors. There are however many supportive doctors like my own who have sent me for lung/heart and gastrointestinal tests.
"It is a totally debilitating condition beyond anything most people can imagine which means you lose your life as you once knew it. This needs to be the message, that if you are unlucky enough have Long Covid it is brutal and relentless and you want to avoid it at all costs.
"The importance of Vitamin D and the immune system is well documented but hasn't been studied in Long Covid patients to know whether they had lower levels before etc or if it would have changed the course of their illness as well as the use of antivirals in the early stages which have predominantly been researched in hospitalised patients."