In their own words

Every one of our Long Covid Support group members has a story of loss and difficulty due to Long Covid. People have lost their jobs, independence and sense of identity and purpose.

Some of our support group members have bravely shared their stories with us in the hope of raising awareness and understanding of this debilitating illness.

This page will be a rolling update regularly featurinLongg new stories.

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

I cannot wash my own hair. Meg

I am 24 and was just getting on with my life. 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.

Long Covid has stolen my identity. Shane

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.

“When will it ever end?” Maree

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

“Long Covid has taken away my dreams for the future.” Jen

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

“It’s like starting life as a toddler again.” Fleur

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

I miss performing with my musician friends. Fiona.

Before my first bout of Covid in 2022 I was very fit, walking long distances, attending Pilates classes, and I was classical singing performance fit. I loved travelling and attending performances and events around New Zealand and overseas. I worked part time and was a very involved active grandmother. I was living life to the full, knowing that time passes quickly, grandchildren grow quickly and we have to make the most of them and life.

The neurological (brain) symptoms I have due to Long Covid, including brain fog, dizziness, memory loss, headaches, mean I can no longer live the active life I was. I must be very careful to pace myself as any activity close to my old busy self causes me to “crash” badly.

I am completely heartbroken to not be the mother and grandmother I was, but try to do my best as I am able. I miss socialising and getting out and about. I miss being able to say yes to performing with my musician friends. My old self is still inside but not always functioning.

My life has completely changed.

Fiona, 67

I was an author. Now I can barely read. Yvette

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.

“Long Covid has stolen motherhood from me” Rufial

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 lost my income, my home, my child. Karl

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.

“I watch everyone else achieving goals that I desperately want, but can’t because of Long Covid.” Hannah

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