Margie Carter of the Neurological Foundation, left, being interviewed on Arrow FM, by Shona Daubé, right, Wairarapa MS community adviser and presenter of the programme, ‘Living Well with MS’. PHOTOS/SUPPLIED
Lisa Urbani
‘Just call me Ma’am and a simple curtsey will do’ – this is the title of the fourth booklet that Carterton resident, Shona Daubé intends to publish.
A sense of humour will always stand one in good stead, especially when dealing with a chronic illness as she does, and there was no time for self-pity when she was diagnosed with multiple sclerosis, five years ago.
Having been unwell, and unsure what was wrong for some years, her diagnosis did come as a shock.
As an ex-nurse, Shona, and her friends only saw patients in hospital who were struggling to cope and at their very worst, so they were concerned for her.
True to her positive nature, she has exhibited great fortitude and courage in facing her illness, and chose to educate herself about it, and face the future in constructive ways.
Multiple sclerosis is a disease in which the immune system destroys the protective covering of nerves, resulting in nerve damage which then interrupts the communication between the brain and the body.
It can cause vision loss, pain, fatigue and affects co-ordination.
Some people are severely affected and have chronic symptoms, while others may be more fortunate.
Physiotherapy can be beneficial, as can medication that suppresses the immune system, and slows the progression of the disease.
It is a life-long and life-changing condition which affects mainly women, and there are estimated to be about 4000 cases in New Zealand, but with information and support, people with MS can still live fulfilling lives, as long as their symptoms are not too severe.
Shona attended a retreat in Melbourne, Australia, run by colleagues of world-renowned Professor George Jelinek, who suffers from MS.
His studies and experience of the disease led to the conclusion that the symptoms of MS can be drastically relieved through diet and stress management.
Shona says it is important to be “active in controlling your own situation”.
To that end she works 12 hours a week as the Wellington MS Society community adviser, providing information, training and advocacy for anyone affected by MS.
Once a month she hosts a support group meeting and has at least 12 to 16 regular attendees, and about 35 people who have registered with her for information.
She wanted to make the point that, “my focus is on their MS, but I am happy to answer questions about my own experience of it.
“For some there is a stigma attached to MS, and if employed, many are afraid to disclose their condition,” Shona said. “There is just not enough awareness.”
Pharmac does fund some of the drugs required to “dampen” symptoms, but unfortunately, in New Zealand, if you do not meet the Pharmac criteria for medication, you may not get to see a neurologist again unless you get worse.
Those on medication get seen by the neurology nurse, who will call in the neurologist to see you if necessary, but neurology services in the greater Wellington region are stretched.
According to Shona, the hardest thing for her has been realising that she can’t be “superwoman.”
“I always worked full-time, juggling work and family, and it dented my self-esteem not being able to multi-task.”
Utilising her nursing background and experience of the disease, she decided to share her advice on coping with MS and other chronic illnesses such as arthritis and Parkinson’s, in a humorous way, with three “very big get well cards” or booklets – amusingly titled, ‘A funny thing happened on the way to the neurologist’,’Does my bum look big with this stick?’, and ‘Pee in this jar please’.
She self-published these through her ‘Pink Cottage Publishing Company’, named after her own pink villa, a treasure chest of vintage and eclectic collections, which is in keeping with her aim to be a “social historian”.
Having been interviewed on radio station Arrow FM by Matt Wills, who hosts a programme called ‘Wheels on Fire’, she saw that radio was a good medium to reach out to those suffering with MS and other chronic illnesses.
Once a week on Monday afternoon at 3pm, Shona presents ‘Living Well with MS’ a programme offering “helpful hints” from experts, people with MS, family and friends, and people who care for those dealing with the effects of this illness, but it is also beneficial for anyone living with any kind of chronic illness.
“As a person with MS myself, I am passionate about living well, with MS and other chronic health conditions and I believe to live life to the fullest we all need strategies and skills to help us.”
Her advice to anyone with MS is to reach out and talk to someone, to share the burden, and remember it can be confidential or you can live “loud and proud” as she does, sharing the trials openly.
It’s important to check in with your neurologist at least once a year, unless you are unstable, and to join a support network where you can access information and meet others in the same situation.
Of her own journey with MS, Shona said, “what will be will be, but for me dealing with it in a humorous way makes it easier and less intense.”
- For more information and to buy her books contact: [email protected] or (06) 378-6913
