Long Covid Stories

I caught covid in June 2022. I passed covid on to household members, they got better and I didn’t. If I could describe my Long Covid journey it would be one sentence “Missing from Action”

Before I caught Covid I was a regular gym goer, I worked part time, I volunteered, I walked my dog every day, I had a busy social life, my husband and I were foster parents. We have adult children and our grandson living overseas so we regularly visited them and had fun adventures together.

With Long Covid, I experienced the most crippling fatigue. My digestive system was haywire. Any emotional stress gave me severe anxiety. I could not walk 5 minutes to work anymore and I couldn’t walk to the front door without becoming breathless. I had days, weeks and months bedridden.

I resigned from work some months later even after accommodations were made for my increasing unwellness, it was clear I was just too sick to work. I stopped all my volunteer work and my husband and I are no longer able to be foster parents. I struggle to maintain social connections and be in bright and noisy venues like restaurants or cafes. I find any changes in my environment difficult especially if they affect my sleep, so we haven’t been able to travel overseas to see our grandson or adult kids since I’ve had Long Covid. 

Prior to contracting Covid-19 I was a Crown Entity executive, board chair, a runner, weight lifter, avid gardener and DIYer.  I am married with grown children, and in the past I would pour myself into big family gatherings and marae events for my Tongan, Maori family.

Since getting Long Covid I have had a job downgrade and I now have to use a walking stick or scooter.  I now often have to wear an oxygen mask, even at work, as I get so breathless.

While I am thankful to be able to work, I spend around 40% of my work day resting, and I have no energy for any of the things I used to love to do.  My garden became so overgrown I got complaints from the neighbours and I had to hire professionals to take care of it.  I can no longer be that person who plays with the kids at the Marae, or spends time with the elders, or help out with the dishes. 

I am doing the best I can but Long Covid has taken a lot from me.

Prior to Covid, I was a fit, healthy, busy mum of 3 children and a dentist. I was a Buckingham Bell can-can dancer, and played the organ at my church. I was an active member of my community volunteering for various organisations and events.

I loved travel, dancing, skiing, wakeboarding, and exploring on my ebike. I loved listening to music.

I now have extremely limited energy due to MECFS symptoms from Long Covid. I can’t work anymore which has psychological and financial effects. I have a mobility scooter and disabled parking badge. I can’t stand longer than 15 minutes due to POTS (postural orthostatic tachycardia syndrome) so I can’t do things like cook for my family. I have brain fog and memory issues which severely disrupt my life. I’m extremely sound sensitive so ear plugs are my friend (though 18 months in I am starting to be able to listen to music for a few minutes at a time). I also have tinnitus which is very annoying.

My world has shrunk and I can no longer do the things that brought joy to my life.

But I have an amazing husband, kids, extended family and friends who make life still worth living.

I got my Covid-19 infection during the start of my first year of university in 2022 at the age of 19.

I had followed all of the safety guidelines and took precautions to keep myself safe, however covid still caught me. Prior to Covid, I was healthy and lived a social and active life. I was working towards getting into medicine but shortly after my infection I started to develop crippling long covid symptoms and was forced to stop studying.

I initially couldn’t walk 15m without crashing. I have never returned to being healthy again. Now I’m two years into my long covid journey and I’ve been diagnosed with POTS and ME/CFS. My symptoms are the worst they’ve ever been. I can barely leave the house and use a wheelchair when I go out on “outings” to the supermarket etc.

I sleep up to 16 -20 hours a day and have a heart rate of 160 bpm standing despite being on multiple medications to control this. My heart goes excessively fast yet there is no explanation for it. Prior to Covid my heart functioned normally. I have to wear compression stockings daily, take multiple medications, constantly drink electrolytes and use a shower chair. My brain fog is awful and I struggle to concentrate, recall and remember things.

All my goals of becoming a doctor are becoming more and more impossible. I spend countless hours wishing for my old life and feeling incredibly left behind and isolated from my friends.

Covid-19 destroyed me.

Prior to catching Covid in March 2022 I was working in two legal roles. I worked four days a week as a union employment lawyer and was also a sitting member of the Canterbury Earthquakes Insurance Tribunal.

I was physically fit and enjoyed riding my electric bike to and from work, walking, doing Pilates and yoga classes as well as aqua-jogging for up to an hour at a time. The weekend before my Covid infection I had been away in Wellington with friends and had walked around 12,000 steps three days in a row. I can no longer exercise for fitness.

I have had to give up my work and my career as a lawyer is likely over. I had just turned 60 when I got Covid and now I’m not working at all but too young to be officially retired. My energy is very low. I sleep for about 10 hours a night and have at least one nap each day. Sometimes I am back in bed by 10.30 am. My cognitive skills have lessened. I have brain fog, trouble remembering words, use different words than I intend and have trouble doing things I once found easy, such as spelling and mental arithmetic. My short term memory is also affected. I can’t do housework as I have dizziness, a rapid heartbeat and get nauseous if I put my head down. Some days it is too hard to shower, other days I can shower but it’s too hard to wash my hair and/or squeegee the shower glass. I can’t do any gardening except a bit of watering.

My husband and I had planned to travel a bit in our retirement. Now, we are using money we had saved for retirement for our living expenses and I can’t see how I could fly any further than domestically in my current state. I miss my work friends and miss going to live music.

I am afraid of getting reinfected with the demise of isolation and mask wearing so am living quite an isolated life.

Prior to covid as a retiree I was reasonably fit doing daily hour long walks and I managed two health issues – asthma and epilepsy. But that came crashing down at the end September 2022  after contracting Covid at a charity event. I went from one infection to another including several bouts of bronchitis and shocking doses of asthma. The first few months are still a blur: I lost taste and smell, couldn’t concentrate and I’d sleep a lot . I still don’t concentrate properly for long, yet before Covid I could remember even the most trivial thing.

At 5 and 1/2 months my GP diagnosed Long Covid. My Asthma worsened and a month after diagnosis my mobility issues began.   In Sept ’23 I started physio for mobility, although doctors were not sure it would help. Initially I used a walking stick then, by the end of July ’23, I was using a walker and by Christmas I started using a mobility scooter.  I can’t go far without use of one or the other. Some days I make it through the supermarket other weeks hubby does it for me. My GP sent me to a Geriatrician in July who has ordered a brain scan. Until I get that scan we won’t know what Covid has done brain-wise.

One thing the Geriatrician said was (a) I had covid overload (b) more importantly I was lucky to be retired, not dependent on a job, and that I didn’t have small children or any children at school so I could take my recovery at my own speed. As of 11 March 24 I’m at 30-50% of previous to Covid sometimes (but rarely) up to 50-70%.  Finally after almost 18 months I’ve started to slowly read again – prior to covid I’d read 3-4 books a week .

I mask in places where I know lots of people are as I want to avoid another Covid infection. The only time been away is to see my elderly parents and then to attend my dad’s funeral. Yes the thought of reinfection scares me.

I recently asked my GP am I right that LC or covid in general has made my asthma worse – his reply “yes definitely”.

Before I had Long Covid I was a full time health professional, always learning, always busy, always wanting to improve myself. I went to the gym and ran an exercise class on the weekends. I am a wife and mother to two grown children. Since experiencing this illness I am contemplating stopping work as its too stressful not being able to work any longer. I can only do short days for so long, and Long Covid is months and months of disruption for most of us.

I don’t cook, clean, see friends, drive, go out for the day or go away for weekends. Everything in life which used to give me pleasure has had to stop because of the awful Long Covid symptoms which get exacerbated by any kind of activity.

My family has been very patient with the cognitive issues of brain fog, where they tell me the same thing each day and I still can’t remember.

I have read everything I can about Long Covid in case there’s something I can do to support my recovery. I wouldn’t wish this on my worst enemy.

People ask me how I’m feeling – “is it fatigue?” I have been describing it like this: “have you ever spent the night throwing up and having diarrhea? In the morning you feel like you have been hit by a bus. That’s what Covid feels like, every day. It’s more than feeling tired…”

Before covid, I exercised twice a day, I wasn’t an exercise nut but I was healthy. And ate and drank whatever I wanted, I had so many options. I was career hungry and studying on the side  I was incredibly social, me and my husband would go on mini adventures and I was always up for something fun. Now my husband is my part time carer and has had to become my biggest advocate, we almost divorced.

I have lost nearly all my friends, and still struggle with some friends and family not being accepting. I stay at home not able to do much, I need mobility aids to function, I had to change jobs, we lost our life savings to specialists and treatments seeking answers.

Nearly 3 years later I am not doing any better if not worse. Rest, sleep, flare up and repeat is my weekly experience and I cannot plan for a future with so much uncertainty within my body.

The 8th of June 2022 will always be the date I lost myself, and my life as I knew it.

Long Covid has obliterated my life as I knew it.

My children lost an active, caring, busy, involved mother, my husband lost an energetic, passionate, professional friend,  companion and wife and became my day to day caregiver. I lost myself for 2 long years.

I was a full time working professional with 4 adult/teen kids, studying for my masters degree and had a full, busy, active and social, rich, creative life. I had summited Mount Taranaki and rode the Otago Rail Trail (160km) recently.

In March 2022 my life changed, almost overnight with a suspected Long Covid infection and I have never fully recovered. I think it also triggered two cancers in my body. I am still not working after having to resign due to my health, I cannot think properly, function with any speed or grace or handle complex spreadsheets or multiple instructions or conversations, or be active as I was, I can only just walk around the block now after 2 years.

My career is in tatters, my health is so precarious now – I fell at home, like an old frail lady, and fractured my foot in 3 places, financially we are struggling now and all plans for the future are so uncertain. I have no ability to plan or do anything beyond existing. I have no idea when I will be well again, if ever. I just want to be “me” again and have a full life again.

I was the fittest person I knew! I ran half marathons, played roller derby, and did crossfit and pilates. I worked fulltime as a cyber security consultant and had an active social life.

I now have severe post exertional malaise (PEM). I need to sit just to shower and do the dishes and I get chest pains from any exertion, including basic home tasks.

I bought my own home in 2020 and 100% would have lost it, and my job, if I hadn’t been able to work from home. As Long Covid is not recognised as a disability and I am above the threshold, my finances have collapsed as I am spending $700 per month on home help, unfunded prescriptions, physio, supplements and other things recommended for recovery.

My GP told me I have to research everything myself and tell him what to put me on, and he is not the first to say so. There has been zero interest from GPs in learning what to do.

I am an advanced clinical nurse who has now not worked since April 2023.

I hold 5 degrees and was busy with my 6th while pioneering a new role that had not existed on a high acuity nursing unit. I was busy with my Masters and an advanced telehealth project as well as designing new protocols for nursing care and working at a high level in a multidisciplinary team.

I have just marked my one year anniversary, and I am sad and hopeless.

I feel guilt that my unit and the service we provide has been impacted by my absence. I feel guilt my colleagues have tried to pick up the slack of my role when they are already stretched to capacity. I cannot read or work on a pc without feeling nauseated and vomiting. I cannot concentrate or focus as it seems my brain is the worst affected. And the more I push myself, the worse the ringing in my ears get. I get chest pain and days where I am short of breath but the ECG was clear so I was sent away. I am tired, even though I am doing a fraction of what I used to do.

As an immigrant, I have no family support and my partner is “sick of me being sick”. When my children want to talk with me as they are teenagers, I can’t wait for them to leave so I can calm my brain and climb into bed. This has robbed me of so much…and all I am doing is waiting. Waiting for something to improve, for a lightswitch to click on, for someone, somewhere to know more.

I feel shrivelled and old. I am robbed of my identity and of my self value. I am angry and I am sad and I am lonely. That is what Covid has done to me.

Work creates income, social connection, and purpose. When people lose their ability to work they lose their financial security, their place in the world and often their identity. This is the effect Long Covid is having on sufferers, people like Leanne:

“In the space of 6 months, I went from having 2 jobs, one as an operations manager and one as a medical practice manager and I volunteered as chair of a board for a women’s centre.

I’m now basically house bound, unable to work at all.”

New Zealanders love to travel, both within our beautiful country and overseas. But for people with Long Covid travel becomes difficult, if not impossible. Sitting upright in a plane or car for hours, walking through terminals, the overstimulation to the mind from being in a new environment all take its toll. “Covid has taken travel away from me,” says Lisa, a 35 year old small business customer service manager. “Pre-covid I didn’t get travel sick or have symptom crashes. Now I’m having a nap at arrival to the accommodation because my day has been long and off kilter due to travel.” The loss of the enjoyment of travel is another way Long Covid decimates lives.

Prior to Covid I lived a busy life, working 40+ hours as a Process Engineer with one of the large energy companies. Work tasks were high complexity, and time bound and included work on generation sites, with a lot of walking involved. I enjoyed regular catch-ups with friends, family, basic hiking/walking routes, and social soccer in summer months.  

I caught covid for the first time in May 2023. I’m a severe asthmatic, though this was well controlled, and ended up with 2 post viral chest infections which were treated with antibiotics and prednisone. I was diagnosed with LC in July.

Long covid has worsened my asthma, given me chronic fatigue, ocular migraines, depression & anxiety, muscle and nerve pain, tingling/numbness in hands & feet (sometimes entire limbs), vertigo, tinnitus, dizziness, and brain fog. My current work schedule is 18 hours (six 3 hour days) and mostly from home which is a bit of a stretch. I can’t exercise without worsening my symptoms, and I see friends and family less regularly due to the strain of it. I struggle to keep on top of the housework and life admin. I often sleep 12+ hours and spend most of my awake hours sedentary.

Leah, 27

Before Covid I lived overseas, organised international exhibitions, hosted travellers, accepted art commissions, taught workshops, renovated an ancient house, and spoke another language.

Since Covid I have not been able to concentrate, I forget words in English, I can’t remember friends’ names, and cannot walk up a hill. A variety of pain symptoms come when least expected. I am unable to enter a crowded room, as I am still traumatised by my original covid experience. My hands barely function and my voice has almost gone.

I am struggling to adjust to my “new normal.” Despite my best intentions, I struggle to stay positive and upbeat about life.

Jocelyn (71)

I am 24 and was just getting on with my life. I was travelling and had just started my PhD. After a very mild covid infection, my limbs suddenly became like jelly, weak and pained.

Almost a year on, I am still unable to stand or walk for more than a few minutes at a time, cannot wash my own hair, make my own toast, or even use my phone with ease.

The biggest impact has been losing my independence.

Meg, 24.

I am an aircraft engineer and small business owner.

Before Covid I used to be a very busy, active, and extremely focused person working as a fulltime heavy maintenance aircraft engineer for Air New Zealand. I prided myself on my skills and knowledge and being able to take on and sort out the most complex of problems.

In my spare time I would also run a model aircraft retail and manufacturing business, bending over backwards to support our thriving local aeromodeling community.

Now, after getting Covid in December 2022, I am no longer that person. I am battling immense fatigue, crippling anxiety, stroke symptoms, memory loss, constant headaches, and a brain that doesn’t work, like it has been anesthetised. I can barely function.

Long Covid has stolen my identity, my life.

Before Covid I was busy with work, managing my household and was actively involved with my grandchildren. I am a nurse with a masters, working two jobs in neonatal care and as a nurse educator. I had an active social life and was planning my retirement after 50 years of nursing.

However I am now needing to retire in 2024. Since Covid, I have had to resign from one job and have to spread my hours for the other job over 4-5 days. I have brain fog if I overdo it at work, severe tinnitus all the time and unrelenting pain from peripheral neuropathy (nerve damage). I am fatigued every day, and yet ironically also have insomnia.

When will it ever end?

Maree

Prior to this illness I was a full time student with 2 part time jobs.

Now I struggle to study one paper.

Long Covid has taken away my hobbies, my freedom, my dreams and plans for the future.

Jen

Long Covid stole my health, my career, my once-sharp mind, and my identity. It’s like starting life as a toddler again.

Prior to Long Covid I worked full time for New Zealand Police, traveled around New Zealand in our van most weekends, I could smash out a 10km walk, and regularly caught up with friends and family.

Long Covid stole my career as I no longer have the cognitive skills or energy to do my job. I now have a tiny part time job paying minimum wage – just enough to pay the bills. I have to sleep every afternoon like a toddler and have to have at least 10 hours sleep each night. The hardest part is never ending chronic spine and joint pain.

Life has changed so dramatically. I can’t believe the impact Long Covid has had on my life.

Fleur, 47

Before Covid I had moved countries and renovated a house. I loved CrossFit. I was working and an author. Now I can barely read a book.

After Covid I had 200 symptoms and received six new complex medical diagnoses. I can’t read or write. or walk longer than ten minutes.

Long Covid has imprisoned me in a body I don’t recognise and reduced my life to basic survival.

Prior to covid I was 3 months pregnant and a busy mama. I was still going to the gym, hosting church in my home, and had a cleaning job. I was always sewing clothes for my kids and making up patterns as I’m trained in fashion design. I did all the baking, errands and groceries etc…and was learning how to garden our massive section.

I feel like Long Covid has stolen motherhood from me. I’ve missed all my children’s firsts. I’ve not gone to the playground for a year. I need help looking after my own kids, and often have to wear earmuffs around them because their voices tire me out.

I need help using the bathroom and showering most days. I sleep for 15 hours a day and am in bed most of the day. I’ve had to stop social outings and going to church. Even a doctor visit sends me into a crash.

I feel like all aspects of life have gone. Except the time I spend with my baby… who for now doesn’t move. For now I can manage him in the day but I worry about what will happen when he starts crawling.

It’s 10 months out from taking on a mortgage and hubby is having to now step back from work to help me. So the hope of buying the house we live in is up in the air. My anxiety and depression are high and hope is non existent most days.

Rufial, 37

I am a 55 year old Pakeha man.

Prior to Covid I was a busy IT Contractor and lived with my partner and child in our rental property. I was physically active and enjoyed time gardening.

Since getting Long Covid nearly four years ago at the beginning of the pandemic, I have lost my job, and couldn’t afford to pay the rent. So I have lost my house and my garden and now live in a mobile home. I have lost my independence. I have lost my child who can no longer live with me.

Before Covid I was just getting my life on track like anyone in their 20s. I was loving my first full time job, studying after work, volunteering, socialising and I had just rented a new flat by myself. I loved being busy and getting outside, particularly walking and swimming every day.

After covid, I’ve sustained damage to my nervous system, cardiovascular system, digestive system and my brain. I experience debilitating fatigue, pain, migraines, numbness, tingling, loss of strength, dizziness, fainting, palpitations, and digestive sensitivities.

I’m unable to work.  I live with my parents, and am unable to leave the house for most things other than appointments.

It’s stripped away my independence and my confidence and has stopped my progress in life. I get to sit and watch everyone else my age accomplish the goals I so desperately want to be able to achieve with absolutely no idea if I’ll ever be able to reach those goals now.

Hannah 25