STORIES

Read stories written by people with Long Covid here...

Alice's story

I have read your submission [to the HSC Inquiry into the NHS Backlog] with great interest and can confirm that my husband and I, who both have Long Covid, have experienced a lot of the problems you describe, with some variations. Main points below, I hope this can feed into your knowledge base on the unfolding Long Covid disaster. - we (me 56, my husband 72) have both had Long Covid since April 2020, having had a mild form of Covid in March 2020. It got a lot worse during 2020 because no one told us to pace ourselves in between relapses and our condition is now very similar to that of ME/CFS ( with added extras). I believe there are a lot of patients like us who were not tested back in March 2020 and then did not know how to manage their recovery in order to avoid it becoming a chronic condition. - because I had quite dramatic heart and nerve problems in 2020 I eventually got referred to cardiology and neurology. The cardiology investigations showed mild inflammation of the heart which hopefully will get better; I am still waiting for a diagnosis on nerve issues. I also saw an ENT consultant privately this year because of my debilitating dizziness which he diagnosed as vestibular migraine. This is still very much going on. - I am still largely unable to work ( 10% capacity max) but because I am a self-employed artist have not been able to access any financial support, never mind that I don’t have the energy to fight for support (eg disability benefit). This is becoming a serious problem now as the economy reopens - I cannot apply for any work opportunities /exhibitions etc . I am lucky to own my house and my husband has a pension. Our social life is largely non- existent - we can barely manage day-to day chores. Before Covid we were very fit, healthy and active people (passing both for much younger than our years) with no underlying health issues. - we were finally assessed for Long Covid in early 2021, mostly via remote interview with a couple of physical tests. We were shuttled between two London boroughs which was very chaotic. But the assessment was not followed up with meaningful treatment or support. I was I initially monitored remotely via the use of the “living with” app but after a few months I was told that we would both be discharged back to our GPs as the LBWF Long Covid clinic only has resources for assessment, not for treatment or support. I can still use the app, which does have some helpful resources, but apparently this will be stopped soon as well. - The “clinic” consists of a pulmonary physiotherapist and an occupational therapist, that’s it; no qualified doctor involved. They cannot make referrals to other rehabilitation services (eg in my case vestibular physiotherapy , and talking therapy to help with anxiety issues ) - everything has to go through the GP, who have to refer to ENT, who then refer to physiotherapy. Needless to say after 3 months this hasn’t happened - my GP is hopelessly overloaded and chronic illnesses that aren’t life- threatening are simply not a priority, no matter how debilitating. - in the light of the above I cringe every time i read anything about Long Covid in the NHS. Long Covid services are grossly under resourced, the system is dysfunctional and a lot of the staff are fairly clueless. - we have found invaluable support on the web ( largely ME/CFS resources, and Long Covid experience in the US) and are self- managing our condition, hoping we’ll get better eventually. - I am very pleased you outline the economic impact of the Long Covid aspect of Covid - clearly our government has not understood this. But then they hardly understand anything about Covid. (submitted September 2021)

 

Sarah's story

I’m at 45 year old wife mother of two, head of a busy events team living in London. The ultimate juggler of life always on the go 6am spin glasses late night gigs and always on my feet always busy till Covid. I think the main thing is that I have lived with this every day for the past year even on the very few good days which I hold onto like a winning lottery ticket. I smile I get up I push on as best I can but for a the guts of a year I’ve been living with a veil of fatigue that consumes my whole body and being my personality the things that make me, me. Like everyone else in lockdown we drank ate too much until we found an amazing positive and hilarious trainer who my pals were working out with live on Instagram every day for 45mins of HIT . We started doing his classes on Instagram live and 3 months later I was fitter then I’d ever been! I’ve run the marathon and would think nothing of getting up and going for a 5/6k run - I love to run its my meditation. So despite all the madness we felt mentally and physically strong an upside to all the darkness going on I got Covid in July 2021 it was my sons birthday we had a had booked a much needed week with mates when both my husband and I got it. He tested positive and immediately isolated upstairs I didn’t and thought amazing I’m not getting it. He felt bad slept a lot but felt better quite quickly Then I tested positive felt pretty crap very out of it crazy dreams and like I almost wasn’t in the room Was able to go to bed and rest my husband was in the clear. Our holiday ruined, devastating. But we could officially go for the last night. I encouraged my husband to take the kids, neither of them have ever had it, and go for the night while I would rest at home still not feeling totally recovered He left, I stayed in bed and the next morning laid on the couch watched tv when suddenly very simply I couldn’t breathe. My breath wouldn’t work. Panic overwhelmed me and I thought this is it the moment I’m one of those poor people. I’m going to die alone in my living room. I dialled 119 maybe 5 times before my panicked fingers got it right and they sent an ambulance the rest is stuff of nightmares but I survived it I didn’t go to hospital. I refused, I couldn’t, people who did were not coming out and I wasn’t going to be one of them. Two paramedic call outs Lots of steroids Antibiotics Many doctors later I was still In bed I don’t remember the moment the fatigue took over but I couldn’t get out of bed I was weak, so weak. And the days passed by like a blur my kids went to my parents in Ireland so my husband could care for me better and they could have a life outside of the house. I don’t remember those 3 weeks they were gone. I slept in a mad fog where getting out of bed would take all my energy. But I thought I would recover 3-8 weeks the doc said. I laughed to myself he doesn’t know me I’ll do 4 at the most ….it’s been nearly 12 Fatigue breathless and just feeling like I live half my life. I’m not me anymore I’m a version of me a stone heavier who hasn’t exercised since that day last July. My brain doesn’t work the same way its not sharp – I had one day I woke up and my eyesight was clearer my mind sharp and it was glorious - but only that day. Its how I know I’m still gripped by it. I can’t run, exercise, exert myself anymore. I live from day to day - good days, bad days, do too much days. But I’m lucky, so lucky, in comparison to the many with heart symptoms tremors etc. Yet I pace myself daily I’ve had maybe 5 days in this past year where I’ve been normal. That’s been largely due to hyperbaric oxygen of which I’ve spent thousands on – it works as long as you can keep it up which is financially impossible. I’m lucky to have been able to do so and it hasn’t cured it. I’ve had a relapse after both sessions which mentally was devastating after feeling so good I’ve tried: Acupuncture Kinesiology Diet Self meditation Seeing a lung specialist Gynaecologist Taking inhalers steroid and relive Mushroom powders NAC Glutamine Tonics Breathing Osteopaths And I’m currently reviewing LDN low dose naltrexone and blood washing BUT no one can guarantee anything and that’s the hardest bit. The bit that makes you cry when you’re sure you’re there and it’s the end of the nightmare. Il keep trying - I want the old me back, I want my vibe back. I won’t let this beat me down. But I can work with support and help and understanding and consideration, although it’s what I live with every day. When I open my eyes I do a body scan in my mind: tingles aches fatigue. Sometimes I wake with the fatigue and then it dissipates through the day. It’s so isolating mentally even thought I’ve the most support from my loved ones and work. Thankful to say I’m having good days now and that’s always a win, means I can work I can parent and get by. Its scares me I’m not considered vulnerable for boosters so I have to wait and when it rises like it is now I’m so scared of getting it again and being set back in the little progression I’ve made. I’ve come to terms - its not linear in recovery but slowly, slowly, there’s more good days. But I long for the day I jump out of bed throw my runners on again and get out there when I don’t have to think twice, and agree to do all things I want to instead of picking, choosing, pacing. So many people suffering into the darkness of no help, no cure, no direction. Its hell Help us pls x

Paula's story

Just before lockdown someone in my husband’s office went home with a cough. They weren’t ill, it wasn’t a continuous cough but I had quite high anxiety about catching Covid-19 so my kids were taken out of school and my husband worked from home. He complained of a scratchy throat for a couple of days but it didn’t develop. We didn’t want to take any chances of passing this onto an elderly, at risk relative. I’d already stocked our freezer and cupboards as well as I could and we didn’t go out. For 6 days I was really enjoying the new lockdown life, I was getting into the home schooling, I found the PE with Joe really easy as I regularly did HIIT training and we would do Cosmic kids yoga in the afternoon. The day after Mother’s Day, the first day of ‘official lockdown’ I was cooking fish for dinner and couldn’t smell it, I thought it was a bit odd, that night I had a shower before bed and couldn’t smell the body wash or deodorant I used. I googled ‘loss of smell’ and it came up with coronavirus. It was a new symptom that supposedly younger, asymptomatic people got. At 40 I wasn’t sure if I could fit into the ‘younger’ category but I was fit and healthy so naively thought ‘oh well, hopefully that will be it and I’ll have immunity for life, lucky me!’ Fast forward 14 weeks and I’m essentially housebound. If i try and walk up the stairs my oxygen plummets to a scary level, I gasp for air like a goldfish in a bowl, my heart rate is through the roof even at rest and nobody can tell me why. I’ve been in so much pain I was convinced my kidneys and liver were failing and at times I thought I wouldn’t come out of this alive.  My sense of smell returned quickly but this was replaced with gut issues similar to food poisoning, this lasted 8 days I had three days of feeling completely normal, however this was quickly followed with breathing difficulties that sent me to A&E, they found pneumonia on my X-ray and told me to go home and i would be better in a few weeks. ‘Come back if you get so breathless you can’t talk or your lips turn blue’ was the message. A few days after this I was rushed to hospital with a suspected stroke as my right arm and leg went numb. Nobody could find anything wrong with me and I was told to go home as I’m probably over it all and post viral. I’ll be better in two weeks apparently. I’m still waiting for this to happen. I’ve had headaches where the pressure was so intense I felt as if my head was about to explode and I’ve had fatigue so bad I’ve barely been able to get out of bed and had to drag myself along to the bathroom. I’m far from recovered. I can’t do anything, I can’t look after my children, do any simple housework or even walk to the end of the road without fear of collapse. Even a long telephone call or zoom session can put me back in bed for days with severe fatigue. When I caught it there was only 7 confirmed cases in my county. I thought I was safe, I was careful, minimised contact with people and washed hands regularly yet it still got me and I’m sitting here not knowing what the future holds. Will I recover completely or are my lungs and heart damaged? Will I have to live like this forever? Is the virus still inside me? Who knows? The future is very uncertain for us long haulers and until the medical professions recognise us all we are in limbo, not one of the hospitalised patients who need care and not a mild case who has recovered. We’re stuck on an island just waiting for someone to see and rescue us. I hope this comes soon as I have two children who are desperately missing the mum they used to have. They want their energetic, lively, happy mum back. Not the one has to spend the day in bed and gets out of breath reading The Tiger Who Came to Tea. 

James' story

I am a 20 year old male with no underlying health conditions from the UK who first came down with symptoms of coronavirus on March 13th, just under two weeks before we entered lockdown. I was being cautious, staying at home as my studies allowed me to do so and because of this I had limited exposure to the virus. Whilst I can’t know for sure how I contracted the illness, I presume it was from contact with a food delivery service man as like I say, I was already staying at home by myself. I think the fact that someone who came into contct with so few people during the apparent incubation period still managed to contract the virus, underlines how much it had spread already whilst the government continued to twiddle their thumbs and play down the threat in the hope of a herd immunity strategy. Around this time the advice was to basically carry on as normal and it was reported that only a couple hundred had tested positive out of 25,000 people. So you can imagine my shock when on Friday night I started to develop pain in my lungs, a fever and chills. My initial symptoms bared resemblance to covid but I didn't have any shortness of breath or a cough. Therefore I wasnt able to get tested. However that week was like something I never experienced as the virus seemingly moved throughout my body causing all kinds of weird issues ranging from chest pain to headaches to confusion to sleep apnea. I was refused a test during this time because I didn't meet the criteria of being unable to breathe. So I stayed at home and hoped things would improve although a part of me knew this wasn’t a mild illness similar to what Ive experienced in the past. I tried to get advice from 111 and my GP surgery but was met with a lot of dismisal. Because I am young with no previous health issues, my symptoms were labelled as anxiety, something I have struggled with in the past. But this was different. I knew I was unwell. Over the next month things picked up but I was still far from my normal self, living with constant headaches, fatigue, chest pain and heartbeat irregularities. I had a feeling I wasn’t out of the woods and this proved correct as around 6 weeks after my initial symptoms, I took a sudden turn for the worst. I was seen at A&E and nothing abnormal came up in any tests despite my debilitating and worrying symptoms. The doctors said it seems like I had covid-19 and these were the post viral effects. I was sent home to essentially get on with it, despite the fact that i felt absolutely awful. The next month was spent trying to find out what on Earth was going on. I joined a covid recovery group to connect with others going through similar situations and I eventually managed to push my GP for more tests, all of which were fine. Despite this I continued to suffer debilitating symptoms with waves of feeling better and waves of feeling far, far worse. My life has essentially stopped. I wake up everyday feeling just as ill as I was in the early weeks. I’m constantly worried my condition will get worse like it has done before only this time something terrible will happen. A few months ago, I was the average 19 year old who never really had to think about his health but now I live in fear wondering what my future holds.  More needs to be done to address the problems that I and many others are encountering. The longer we are dismissed, the more unstable our conditions could become. I understand this is a new virus and its not yet fully understood but thats why gaslighting sufferers or dismissing them entirely are potentially very dangerous. No 20 year old should be expected to live like this. Suffering chest pains, weakness, headaches, nausea etc. every single day. To suffer for months on end with no relief and no answers is just too hard. I didn’t ask for this, I even tried my best to avoid this but yet here I am almost 4 months later stuck in an all to real nightmare. I just want my life back...

Alison's story

Three weeks before lockdown I knew the pandemic was coming, my mum had been working with international students and he already been scared for her safety. I also knew my daughter and I normally catch every cold and bug going so I felt like we needed to try to get ahead of the game. I bought a thermometer, health supplements, hand sanitiser and lots of biodegradable anti viral wipes. I made and froze lots of soups. I also started asking my five year old daughter whether she was washing her hands at school. She replied that they went straight from play to lunch and she wasn’t allowed to wash her hands in between. I started to worry and complained to the school. They looked into it and admitted that her class were not in fact washing their hands as they were one of the classes to have play before lunch. They assured me they would start washing their hands. Two weeks before lockdown she developed a cough. News was spreading about precautions that should be taken around coronavirus so l kept her off school. She seemed ok, with no fever just a bit snotty with the occasional dry cough and I reassured myself that I was just being cautious and that she wouldn’t have THE virus. The week before lockdown the school rang to say she should be back in school and other kids were in with coughs. I argued that the government advise was to stay at home if you had a cough. I kept her off anyway. Two days before lock down they finally agreed with me that I was right to keep her off for as long as I thought necessary and I wouldn’t be fined. That’s when I relaxed. The relief was quickly followed by extreme exhaustion. I went to bed early with my daughter. I woke up with a fever. My temperature was 38.5, I messaged my friends saying maybe I had just got hot in my quilt but my nurse friend replied saying it would be unlikely to read that high for any other reason than I was running a fever. Then it hit me. Burning in my chest and airways. I remember describing it as feeling like I had breathed in a poisonous chemical. I was completely wiped out, in a dream like state concentrating on staying alive. The following night I went to the toilet and lost consciousness twice, I remember gasping for a breath and shouting out the word ‘mum’ before my partners name and I then remember thinking ‘I almost died just then’, we called 111. The doctor assessed me over the phone and clinically confirmed Covid-19. We were to stay at home and only call again if I had difficulty breathing. The whole family went into isolation. Our house is small and we three of us usually shared a bedroom. The doctor agreed that I probably caught it off my daughter and the message being touted was that children are rarely affected so we didn’t worry too much about her. We thought it was most likely too late and we would all be infected by now anyway. My partner seemed fine thankfully. Although I was terrified he would come down with it too and no-one would be able to look after our daughter. Luckily that never happened. He had two days of feeling run down. The feeling of being poisoned continued for me. I had suffered with kidney stones a month before this but otherwise I was a healthy 37 year old and we were stocked up on superfoods and vitamins so ‘it shouldn’t be too bad for me’ I kept telling myself. Although the way I felt made me fear for my life. I burned essential oil constantly and luckily no cough developed. I can not put into words how strange and ill I felt or still feel. I had terrible headaches, neck pain, eye pain with very slight shortness of breath with the burning sensation and I slept for days. On day 7 it lifted! I got up and got dressed and called my family and expressed elation that I had beat Coronavirus. Day 10 I was hit again hard, the headache and neck pain were unbearable and I called 111. They said I needed to go to a&e immediately, to be checked for viral meningitis. I was examined, no meningitis signs and my lungs sounded clear, I still didn’t have a cough but they reconfirmed it was Covid-19 and said we should stay in isolation until my symptoms went. My symptoms continued. I had a temperature that jumped around, head and neck pain that felt like burning, blood shot eyes, a crawling skin sensation, burning airways and a numb tingling tongue and lips. This went on for a month. I was barely out of bed, except to lie in the sun for the Vit D3. I was scared and confused and the doctors started to sound confused too. I would have the odd day when symptoms would seem to lift a little but then they would return with force. At week 6 I managed to get a swab test as my partner is a key worker. It came back negative, I was thrilled as the advise was that it meant I was no longer contagious. I could cuddle my daughter! I started to feel a little better. My doctor still believed I had had Covid-19 because of my symptoms but said that by week 6 it was probably gone. I tried to regain some normality and spent a lot of time in my garden but the waves of symptoms kept coming, at least for a couple of days a week and then I developed new symptoms, Covid toe appeared in week 8, a rash on my knees, my headache continued. I had heart palpitations and a strange floating sensation, dizziness and nausea. I was also developing brain fog and found it hard to find works. I kept calling my GPs, they gave me blood tests, all came back normal, they started talking about PVF. It didn’t and still doesn’t feel like anything other than the virus symptoms reappearing in waves or ‘hits’ as I was referring to them as but I have never had PVF so maybe that feels as just like the original virus, I don’t know! Then week 9 I noticed my daughter was coughing slightly again and getting out of breath after climbing the stairs, she started looking pale with blood shot eyes on the odd day and then the tummy aches, headaches and limb pain began. We called the doctors. They weren’t concerned. On week 12 my head pain along with sensory sensitivity and whole body pins and needles, took me back to a&e where an urgent neurologists appointment was advised. I’m still waiting to hear from them. Meanwhile my veins have been bulging, my hands develop strange red pressure marks and mu toenails regularly go blue. I had the blisters that were on my feet come up on my hand last week and all the while the original symptoms are still regularly reoccurring. My partner called the doctor about my daughter being off her food, having shortness of breath and still talking about having other symptoms persistently. She finally had blood tests. They came back normal. Then on week 14 I noticed her tongue looked like the images of ‘strawberry tongue’ connected to Kawasaki disease which has been linked to Covid. Our GP consulted a paediatrician and they ordered more in-depth blood tests. We’re still waiting on these results. We’re both still very ill almost 4 months later. We have both tested negative for anti bodies but have been told by consultants to ‘ignore the tests’.  It has been and still is the most awful and terrifying thing I could ever have imagined. The symptoms are endless, bizarre and completely debilitating. We are not only very ill but we are ill with something the medical community know nothing about. We are still being told that they can’t be sure we’re not contagious so therefore, for us that means we still can’t cuddle my mum who lives alone and my daughter has not been able to play with other children for four months. We might not be able to have a vaccine, for Covid, if one comes into existence or even for flu in the winter because we are still sick. The county is deciding to come out of lock down while we sit and wait still feeling so very ill with no treatment. The support groups and the incredibly strong people who have been going through the same thing as us have been keeping me afloat but if I’m honest, only just. They are the only people who truly understand and I’ll be eternally grateful that I had access to speak to them. It’s honestly like living in an apocalyptic horror film and I just can’t even imagine what going though this would be like in a less stable county or a less stable situation. The world needs to understand that this virus is complex and deadly and do much more to prevent more people from catching it and to support those who already have it, as in our experience it doesn’t seem to go away!

Cristina's story

I never expected to still be unwell 110 days after onset of symptoms on the 17th March. I am grateful my symptoms are not as severe as before however the relapses always scare me. I experience flashbacks of the bad days of when I thought I would die, even updating this has been hard. I have been able to perform daily tasks (cleaning, cooking, exercise (short and not intense) but need to listen to my body and not push it too much. Due to my profession as an ICU nurse where I need to be on my feet for 13hours, I don’t yet feel safe nor strong to return to work. Once I manage to have one to two full weeks without any symptoms, then I’ll see that as a sign of my body having fully recovered. To those of you still suffering with this horrendous virus, hang in there, things will eventually get better. Sending you all positivity, love and a speedy recovery. This forum has been a great help, I would have felt lost and lonely without it as friends and family simply don’t understand it and majority like to simply say that it’s anxiety!!