My year of long covid: ‘the pandemic isn’t over’
Darren Parkinson is one of about 2 million people living with long Covid in England and Scotland. The illness is having a detrimental impact on his life, stopping him from being the kind of active and involved parent he wants to be to his two children.
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The Guardian has spent a year with Darren and his family to document his journey as he tries to recover from long Covid and come to terms with his new reality
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#longcovid #covid #coronavirus #uk #lifewithlongcovid
50 Comments
I'm coming up on 5 years of long covid. I've lost everything. I was trained for a 70.3 mile triathlon and now I am about to lose my 2nd car.
My heart goes out to Darren. Fellow long hauler here. The pandemic isn't over. And it won't ever be over unless we stop the chain of transmission and stop re-infections. Most spread is asymptomatic. We must continue to vax, mask, and socially distance. We must live our lives, just vax, mask, and distance.
I'll never be back, but for awhile I thought I would have to have someone live with me because of the brain fog. Long covid seems to have put inflammation on all problems that used to be small. Acetyl l carnitine 1500 mg has helped so much, especially the brain fog. I can also use the hand mower for about 20 to 30 minutes at a time. The small successes are huge comfort. Please research, I know how you feel, hope it might help some others too.
I got a virus in early 2020 it wasn’t Covid. It was influenza a and since then I have had terrible fatigue to the point that I have days I can barely move never had that before I was sick and it’s been five years now and the doctors can’t figure out what’s going on
The most frightening thing about this is that this man thinks a government would invest in research to get people to be fit and healthy after long covid. The reality is that the only research that is done is usually B!g Ph@rm@ and their priority is money full stop.
Can I just check that in 2021, you got both vaccines? Had you had both vaccines, you would have had a milder case of Covid and would not be suffering now. Or did you refuse the vaccine? Vaccines were available from December 2020. Just saying.
Thanks for covering this. Please check out Suzy Bolt programme that is helping some people.
I'll be 5 years with long covid in march 2020. Housebound every winter. Semi housebound the rest of the year. Most annoying is possibly immune system has been on strike since. Some things do help. Eg Suzy Bolt classes. A lot of people are improving with support but people need support.
I’ve been ill since March 2020. Some days, weeks, months are better than others. I mask, get boosters, attend school (1 course per semester) ride my horses slowly 1x a week if it’s a good week, I spend most days in bed, it’s depressing. Capitalism is why our system doesn’t serve the people who make it possible. We are seen as replaceable.
we've been abandoned by the state.
This guy should be advocating for masks, not going out maskless trying to catch it again
Wishing you good health and happiness, Darren 🙏😇✨️✨️👑💐❤️
What a terrible shame, but as you said Darren, invisible, it's so important that you made this film to help us understand your reality, and that of so many others. Thank you, blessings
It's grim stuff, I'm sorry to see Darren going through this. I'm on my second stint with long COVID and I'm really depressed about it, and Darren's got it way worse than I do.
– The first infection in 2020 was mild (not even as bad as a cold), but left me with permanent heart palpitations. I also had exhaustion & brain fog that took months to clear up, but I did manage to get back to normal.
– The second infection in September 2024 was like flu, and I was in bed for over a week, and I'm still struggling with symptoms. While I feel a little better, I thought it would've cleared up by now. It hasn't.
I'm still frequently exhausted (often having to go back to bed after any kind of mental or physical exertion, as my eyes just start to close — I describe it as 'angry tired') and it's getting to the point where reducing my hours at work won't cut it because I can't do my job at anything like the level I need to. I will likely need to be signed off for a bit to recuperate.
The UK government needs to do more on multiple fronts, e.g.
– Firstly, stop people getting COVID! We need better ventilation in workplaces, businesses and so on. At the least, GP surgeries, hospitals, schools, public transport etc. should be prioritised.
– Secondly, more COVID vaccinations for those at risk (including those who've had long COVID in the past). I paid £100 for a private vaccination, but it was too late for me this time around (I know that vaccinations won't stop all infections, but a reduced risk is good enough for me — I'll be getting a COVID vaccination every 6 months from now on).
– More long COVID clinics / resources to help people who are sick. I've not yet had any kind of targeted help from my GP, so we'll see what happens next time I attend.
I relate to this so much, having had severe M.E. for 30 years and been mostly housebound. Had thought that long Covid would bring about more research which would also help those of us living for decades with a similar illness but the hope seems to be folorn. I hope Darren will improve and that there is also hope for all of us with these devastating chronic illnesses.
I had long covid (probably still do in some ways) but due to the fact that I'd end up homeless if I didn't go to work I gradually improved. Even three years in, I have noticed if I have several days off work and lie around resting that a lot of my symptoms return. It's common knowledge that over exerting yourself can cause post exertional malaise and so on but resting too much, at least for me, is just as harmful if not more so. If I'd been privileged enough to quit work and "rest" then I think I'd be basically disabled. As it is, I'm able to work and live normally despite still having some POTS symptoms and anxiety and fatigue. There seems to be some need for balance — not too much and not too little. It's also very psychological. I can get 20,000 steps in on a work day and I actually start the day with symptoms and by the end of a 12 hour shift I feel almost completely normal.
I had optimistically hoped that acknowledgment of Long Covid would lead to better things for patients of all post-viral illness (which account for many cases of CFS/ME). More fool me.
I really sympathise with Darren, chronic illness really does shatter your mental health – I caught the nasty respiratory virus that was doing the rounds back end of last year….I am still recovering from it now…I caught it in mid-October and had severe symptoms, I was bedridden all over xmas – even having it for three months has really affected my mental health….I really feel for poor Darren, being so poorly for a whole year…I really hope he recovers fully soon. sending much love and healing vibes his way. Don't give up Darren🙏❤🩹😌
The delta variant of COVID was transmitting very high, it was highly virulent, it has a moderate immune escape against vaccines based on original strain. If we get another variant with a moderate immune escape to be dominating and it is not significantly less severe than previous omicrons, then I would be more serious about taking extra precautions. As I mentioned, the current variant that is dominant has a very low to almost non existent immune escape against the vaccines based on JN.1. It may have been the case in the recent past that vaccines only slightly reduce risk of long covid but now it very significantly reduce risk of long covid (reduce risk by 90% as opposed to just 30%) because immune response from updated vaccines are much more potent, in other words, much more lock and key. Not only provide T cell immunity like from previous variants but also very strong neutralisation of antibodies. Time will tell whether current vaccines will remain as effective as they are today against most recent variants and whether the disease may be getting much less virulent and whether the disease may remain less transmissible than flu.
I think I have long covid too. So debilitating. 😢 I wish Darren the best. ❤
I'm coming up to 5 years with this. Very little sympathy from medical professionals, or family, or colleagues.
Thank you for highlighting this ❤️
The invisible illness with no treatment. Apparently sufferers report lower life satisfaction than people with cancer. The moments of despair and hopelessness as you mourn your past life and face an unkown future are hard to comprehend, especially when someone sees you for five minutes and thinks you seem 'alright'.
I have lived with a very similar condition, a form of autonomic dysfunction called Postural Orthostatic Tachycardia Syndrome for over 20 years. Before the onset I was athletic and active. I climbed Kilimanjaro. Then I was bedridden for 1.5 years and just never fully recovered. I feel for this man. In 20 years not one successful treatment has been developed for my condition. He is in the transition toward acceptance.
Runs upstairs with no railing after struggling to stir tea? Maybe it is depression. I know during my depression I would worry excessively about physical ailments and that worry created more physical pain in my mind that wasn't really there
I was infected in September of 2022. The acute infection hit me pretty hard. About a month and a half after my initial infection, I still wasn't feeling fully better. I was sleeping a lot more, finding that sleep was never fully restorative; and I was having trouble thinking. I tried returning to workouts, but found that just a single workout of even moderate intensity would wipe me out for almost a week. (I was a gymnast for 13 years, then did track for a couple years, then returned to calisthenics and hand-balancing. Just before infection, I was working out 4 times a week on average.)
I didn't understand this illness, and was trying to treat recovery like any other viral illness I'd experienced in the past. That is, I was just trying to push past the malaise. I decided to become quite physically involved in the UC graduate student strike that took place in November that year, doing many hours of picketing each day for about two weeks. It was grueling — hot, sunny, and my symptoms were getting worse and worse. Heart palpitations, racing heart, pain in my chest, difficulty breathing, intense fatigue and brain fog. I didn't know what was going on. So I just kept on going, until the pain in my chest was to intense to brush aside.
In December, I was diagnosed with long-COVID. Fast-forward 1.5 years to May 2024, and I was diagnosed with POTS and CFS. (Although, I consider myself one of the lucky ones, as many folks have to wait upwards of 5 years or even more to obtain such diagnoses.) It's been over two years since the initial infection, and I'm still suffering greatly from it. My greatly reduced capacity for exertion is of course quite annoying, as is the PEM. But what pains me the most is the brain fog. I was (am?) a graduate student, and my mind's integrity was absolutely central to the life I was building for myself.
It can be really hard to explain what brain fog feels like. It's certainly uncomfortable, if not actually painful. It feels somewhat like the cognitive impairment of a hangover. For me, word recall is compromised. My short-term and long-term memory are both compromised. My executive function is compromised. My capacity to run through and understand arguments is compromised. My capacity to express my thoughts clearly is compromised. All of these I need for my work.
The best metaphor I can come up with for how brain fog feels and affects me is the following. Trying to think is akin to struggling to walk through mud. The deeper the mud is (the worse your brain fog is), the slower your walk (think), and the more you have to push and exert yourself in order to get to the other side (complete the cognitive task at hand). Even when the mud is quite shallow, it still slows you down. It is still harder to get to your destination. But these days, I'm happy if the mud is shallow, rather than deep.
One final thing I'll say: long-covid, like many other chronic illnesses, is invisible in several senses. In addition to the sense that Darren mentions in the video — namely, that we're invisible because we're largely housebound, thus never seen by the healthy public — long-covid is invisible in the further sense that to someone who doesn't know anything about chronic illnesses, I might look perfectly "healthy."
Try four years, my friend. Astonishingly, I do not suffer at this poor dear man's level, but I am sick quite often. Not a week goes by without being impacted and limited by symptoms of long covid. I am so sorry for Darren.
Thanks for speaking about this Darren, best wishes to you and your family
Don’t wait for western medicine to find a cure. You have to go and find your own path to recovery. I had the double whammy of Glandular Fever and Covid three years ago and after a year of doctors telling me there was nothing they could do I went and found my own answers. And it had several elements and not just one thing. After two years I’m feeling much improved and will be heading back to work in a couple of months.
People who think that the pandemic is over its not over so many people now have long covid if you are unwell please can you stay at home don't infect others
I'm the same with Long Covid, it was like my body and brain aged 30 years in the space of a few weeks, I now barely get out, need a mobility scooter when I do and have damage to multiple organs in my body causing all sorts of medical problems, I didn't die though, so I have hope
I wonder how many key workers – people who actually do vital work, such as maintaining utilities – have got long covid.
old linus sebastian
Please keep sharing and highlighting this. All thoughts with Darren and others.
I caught something in may 2023, the worst flu like symptoms ive ever had, probably covid but didnt test at the time. Havent been quite the same since.
I got a bit better that summer and started attempting 'normal' activities again (for me, this was 15 mile+ hilly walks, long cycles, working full time, regular trips, social life and activity). After one cycle in autumn 2023, this triggered post extertional malaise like ive never know, unable to think, move for weeks at a time, brain fog, aches. Struggled through working for next six months or so, with increasing absences in a stressful environment (with other external stuff going on too).
Eventually all got too much and was finally signed off in May 2024, which saw slow and steady improvement via cold water immersion, yoga nidra, breathing exercises. Nowhwre near 100% yet (can mostly potter around and do day to day things now but not returned to my pre infection activities, still breathless on slopes and upstairs, achey and brain fog, but have recently returned to work on a phased return.
GP said they openly didnt understand it. Went through all these relevant tests, xrays, echo scans etc, all clear. Six sessions of long covid physio were great, supportive but mostly holistical. No treatment of course.
A referral to the excellent ENO Breathe course was brilliant too, would recommend that if people can access it. (Wasnt made aware of it til very late on in the long Covid clinic).
Support has been very fragmented. Work and HR have been difficult and made things worse, due to a lack of understanding. Ive found Jackie Baxter's Long Covid podcast very useful too. All the best everyone.
Thank you for giving such a moving documentation of the struggles pain and affects in which seems to have been forgotten or buried away even a rejection from some areas of the population and political class we have been forgotten about and even persecuted. I have suffered for two years with long covid and the way it has affected my cystic fibrosis has ruined my life. Yet there are still so many that don’t understand and just assume I’m lazy or “swinging the led.” If life wasn’t already painful enough those comments and judgments cut even deeper, but this video has helped give a snap shot into the struggles and absolute ruin that this disease/illness has brought to my life and sadly many others. Please keep being a voice and highlighting the battles around this.
This was me in 2021, such a range of weird symptoms on top of the fatigue. Still think I have it although probably 80% better. Like this guy my “endurance” has gone so my walking is limited to about 4 miles or cycling to about 15 on an e-bike now from 20+ mile walks.
Drs didn’t know what was wrong, I have health anxiety and tinnitus now.
I am finding that high protein intake and vitamin supplements are helping.
My thoughts with Darren, his family and all suffered with Long Covid or Post Viral Fatigue. I was diagnosed with PVF last February and though not as ill as Darren (i.e bedridden) I had similar energy and fatigue issues and despite medical confirmation of PVF there is no support. None. I got a sick note for three months and then the Doctor recently considered Long Covid but because of no formal diagnosis (which they acknowledged is a problem with self diagnosis) I couldn’t get LC support. Would like to discuss with Darren as he / they live a short distance away.
My friend got COVID a second time. Her doctor gave her a antiviral med. She had long-term shortness of breath from her first infection. The antiviral not only helped her to recover quickly but she felt much improvement in her breathing issue! She feels that her body was somehow holding on to the first infection and the antiviral got rid of it.
Thank you for bringing attention to the missing millions.
The draft of the self declared pandemic treaty is negotiated relentlessly. These planned adverse reactions will continue with disease X or whatever the next emergency is called.
I had covid two years ago and since then I have stubbed my pinky toe twice. The second time felt like my toe was torn off, but it wasn't. I was cussing for like a minute, and I have decided it has to be due to covid, because the government is out to get us. It's all a secret plan, that everyone in government is in on. (every comment here)
I am dealing with this right now, despite being very cautious with my health – hygiene, nutrition, distancing, masking, etc. I am immunocompromised, I was affected as a dependent by the Camp Lejeune toxic water contamination that has killed and sickened hundreds of thousands of people over decades. This has absolutely devastated every aspect of my life – emotional, financial, relationships, and of course my ability to be the once athletic, active person I was. For those who are housebound, and severely disabled – we are indeed invisible and mostly ignored by society at large.
So he got COVID in 2021…but probably had several vaccines beforehand…was it the vaccine that caused this? I'm sure this person is vaccinated…generally speaking, I only see the vaccinated complaining about "long COVID".
The pandemic is not over!!! I thank Darren for sharing his story with the world. For anyone reading this, the best way to help Darren and people like him is to raise awareness of Long Covid and the continued threat posed by Covid-19.
The second best way to help is to wear a mask so we can all keep each other safe! Masks work really well at preventing the spread of respiratory illnesses, including Covid, flu, RSV, and norovirus. N95 and KN95 rated are the most effective!
You have to adapt to your situation. You can still do thing with your loved ones- read stories, puzzles, arts and crafts, etc. Stay positive and cherish each moment you have. ❤❤❤
Get vaccinated 😂
Hello Darren, if you happen to read this I wish the absolute best for you and your family.
If I can offer you anything it took me 24 months before I could start trusting my body again and the brain fog started to lift.
I hope very much that you make improvements at your pace and you get your life back.
Much love to you and your family. ❤
Darren if you read this, I had very similar long covid symptoms to you and was house bound for 6 months 2020-2021. I read the book "Healing Back Pain" by Dr.Sarno and explored the mind body connection of this illness (there are many recovery stories online) . I am now fully recovered for 3 years. This may not help you but there is hope. My heart goes out to you.
It took me three years post covid infection to be able to walk 6 blocks, 3 blocks each way, on a level surface- the journey is long but there has been some incremental progress.
Very interesting topic. Didn't know about this. Very sad.