Stories of people with ME/CFS and Long Covid
To recognise World ME Day in 2022, ME Auckland started conducting a series of #LearnFromME interviews highlighting the journeys of people with ME/CFS and Long Covid.
These video interviews highlight the lived experience of people with ME/CFS and Long Covid; and the normal lives these people give up, that others may take for granted. They offer insights into symptom management options, talk about the services that ME Auckland delivers and provide messages of hope.
We aim to raise awareness of the debilitating nature of these conditions and provide insights and personal experiences to those also battling these illnesses.
Alexandra Parkinson and Jewel Turinsky
ME/CFS and Long Covid
Alexandra has had ME for over 15 years (although only diagnosed 2 years ago) which started after a combination of stressful experiences including losing her father, work and study burnouts, and bad viral infections. She experiences neurological problems – memory and concentration challenges known as ‘brain fog’, headaches, body pain, and food sensitivities. She is grateful for the advocacy support ME Auckland has provided when engaging with medical professionals, accessing help, and their online Facebook Support Group which allows connection and conversation with others with ME/CFS.
Jewel picked up Covid in January 2020, when she travelled from NZ to the US for work. She travelled back to NZ and realised that she was not recovering from her symptoms, experiencing intense fatigue that didn’t improve with sleep and worsened after any activity, changing body pain, migraines and neurological issues. Jewel reached out to ME Auckland for support due to the similarities in symptoms with ME/CFS. She says “ME has been around for a very long time and I look at Long Covid is just a subset of ME, because Long Covid is post viral fatigue. We just happen to know where our condition started”.
Michelle was diagnosed in 2017 after contracting a bad virus, while at the same time juggling a new career as a primary school teacher and navigating life as a single parent. She experienced intense fatigue that worsened after any activity, headaches and anxiety attacks which were out of character for her.
Despite ME challenges she is grateful for the things she does have – the peaceful surroundings where she lives, her son and the health she does have. She says “for the people that have it [ME], its ok that your life is different now and she encourages you to find some kind of acceptance and peace. You don’t get anywhere fighting it”.
It’s hard for Vicky to remember life before ME, as she got sick in her 20’s after several courses of antibiotics and a respiratory virus and was diagnosed with ME/CFS. It’s been an uphill battle ever since and she says her life is about managing the illness on a daily basis. Daily she takes Vit D, C, Magnesium, Zinc, herbs and flower essences and a variety of other supplements according to symptoms.
Since having the Covid-19 vaccine her health has been significantly worse with ongoing neurological challenges and food and chemical sensitives and she has been diagnosed with Mast Cell Activation Disorder. She has hope for recognition for ME/CFS due to the Long Covid situation.
'Me and ME'
A poem by Anne White
Anne wrote this poem to get down on paper her situation living with ME, so she could refer to it, not just if needing to explain aspects of it to others, but for herself. She needed to clarify the ‘ground’ she ‘stood’ on.
It took a lot of reflection and a number of days for her to be able to articulate all this.
She says: "Even ’tho I’m a couple of years on now from when I wrote Me with ME it is still my ‘ground’ and stable reference point. Although I'm still around 6.5, perhaps because I’m accustomed to living with ME and have designed my lifestyle to accommodate it, I’m currently feeling pretty good".
Anne's definition of feeling good is:
1/ Being in a state of equilibrium
2/ Being content within my limitations
3/ Having enough of what I need
4/ Not being overwhelmed by any particular symptom or symptoms
5/ Pacing myself nicely
6/ Although I may be on my own a lot, having a sense of belonging or connection with others