It was during this time that Nat contracted glandular fever, and as many of you know, she has been managing the symptoms of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) ever since. This is a truly debilitating illness which very few people, including those in the medical profession, understand.
We thought it might be helpful to break down the terminology here:
ME is described as systemic neuroimmune condition which causes dysfunction of the brain, as well as the gastro-intestinal, immune, endocrine and cardiac systems. One of its particular hallmarks is post-exertional malaise - a severe worsening of symptoms after even minimal exertion.
But what does all this mean for our friend? Well, even though Nat might look and sound completely normal and healthy to us, this belies the fact that she basically has a limited energy budget per day - around 40% of what an average healthy person her age has. It’s a balancing act of carefully calculating how to eke out that energy without ‘overspending’. This might require ‘saving up’ by resting up for two days in order to go out to dinner with friends. Even seemingly small things – things we all take for granted - like talking, thinking, or taking a walk, while potentially pleasurable, all exact an energy toll. Too much ‘taxing’ literally leaves Nat with nothing in the bank and she ends up in pain with flu-like symptoms, brain fog, headache, nausea, IBS, hair loss and feeling exhausted to the point of needing to lie down or sleep. Such flare ups can last for days, even weeks. This makes for a very compromised existence.
For the past eleven years, Nat has been proactively trying to understand and manage her condition, seeking help from specialist doctors, ME/CFS experts, nutritionists and naturopaths, and undergoing a battery of tests. Only last year, she also tested positive for Lyme’s Disease, another rare condition that can manifest as ME/CFS. It’s enough to make the average person curl up in a ball and say ‘enough!!!’! Yet for all this time Natalie has soldiered on, continuing to work in fields where she is giving so much to others: helping refugees find employment; connecting disadvantaged children to positive adult mentors at Big Brother, Big Sister; and assisting students from low SES backgrounds to adapt to life at two major Australian universities.
Natalie is still working (on the very cool Welcome Dinner project among other things), but over the past few months has found herself quite dangerously ‘in the red’ in terms of her energy budget, to the point where she is finding it hard to function. It’s got to the stage where Nat desperately needs to take some time out to rest and rebalance.
Like many chronic conditions, ME/CFS is not something that one visit to a health care professional can ‘cure’. It requires constant monitoring by Nat, in concert with specialists who can track her progress and tweak treatments, drugs and supplements accordingly. Since moving back to Sydney, Nat has found an excellent naturopath, and is booked to see an Integrative Medicine doctor in July. She is also hoping to get regular physiotherapy treatment (remember the MYA_ALGIC: muscles – painful?). These are all important steps that will build a secure scaffold for her healing, but they also require considerable funds.
Just to give you an idea:
1. Integrative Medical Doctor: Initial appointment $330 out of pocket, ongoing appointments $150 for 30mins.
2. Tests and pathology: approx $800
3. Naturopath: $150 initial appointment, follow up $80
4. Vitamins, supplements and herbs: monthly cost approx $250
5. Physiotherapist for body pain (currently daily neck pain): $80 per session
Natalie wants to take these renewed steps towards managing her condition but is understandably anxious about how she can possibly afford it considering her diminished capacity to work and her need for rest.
In her work life, Nat has a history of supporting people who find themselves in vulnerable circumstances or just need a better break. It is actually a very vulnerable time for Nat right now, and she has openly and tearfully shared with us that she really needs some help. We figure that the best help we can give Nat is the gift of some breathing room so she can work a bit less, rest a bit more and get her energy balance back ‘in the black’.
We want Natalie to be able to get started with the treatment she needs right now without worrying about how she will pay the bills/ or finding that she just can’t. To do this, we are asking for you to join us in investing in Nat’s return to better health by donating generously to this campaign.
For us, Natalie is one of the kindest, funniest, most gentle and caring people we know. We also know that you love her as dearly as we do. Nat has shared that more than anything, she wants to be able to reach a point where she can engage more fully in life and work and enjoy the simple things she loves. Let’s all give her the break she needs to do just that.
Jess and Kirsty xxx
- CH Marron
- Mim Butler
- Anna Kaineder
- Tina Donaghy
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