Posted in ‘The Beacon’

Ebony Whitaker has taken his first tentative steps into a new life this week, after becoming unwell in his early twenties with the devastating chronic illness Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome.

Whitaker has started an apprenticeship as builder after completing, in November 2020, the online Towards Wellness program run by Complex Chronic Illness Support, funded as new initiative by the Disability Community Trust. Whitaker has worked as a landscape photographer running Fine Art Landscape Photography when his health would allow, but since completing Towards Wellness, he has been able to do so much more physically and mentally that he wanted a new challenge.

“I found the programme really helpful, and it was great that we could access it online when Covid -19 made meeting physically impossible. With the things I learnt, and the health management practices that I employ, I really feel in a much better place physically and cognitively, the old nut is cranking” says Whitaker.

Other participants of the online program have found it helpful too, Mandy Dawes who lives with Fibromyalgia says, “Wow! It was very informative; the information was really good, and it has helped me with a lot of understanding of this disease… through Towards Wellness I have been able to make sure that I get up every morning and have developed a routine from the information given to me”. She highly recommends the program as a way to get a handle on these complex and often misunderstood conditions.

Complex Chronic Illness Support is delighted that the Disability Community Trust was able to fund the online program. Eastern Bay Field Officer Elizabeth McGougan says “it came at a great time; we were able to develop the existing program and move it online really quickly. The funding meant that we could reach our Eastern Bay members so much more easily. Since the course all the participants have reported positive changes in their lives, be it returning to some kind of employment or taking on more community involvement. It has made real change in their lives.”

As Whitaker arrives at the building site each morning, it is with the joy and knowledge of someone who has had to build himself and his life back up again piece by piece over many years. Whitaker says, “the message is that there is hope, no matter how long you have been unwell. If you are willing and have the patience, you can build a good life for yourself, just don’t give up”.

May is International ME/CFS Awareness Month, and the members of Eastern Bay Complex Chronic Illness Support are opening up for an information sharing afternoon on Wednesday 12th May from 1.30pm to 3.00pm at the Lyceum Club rooms on the corner of Domain and McGarvey Road Whakatane. RSVP to 020 401 79092 or [email protected].

Additional information:

What is ME/CFS/FM?

Myalgic Encephalomyelitis (ME) has been known by many names, commonly referred to as Chronic Fatigue Syndrome (CFS), is a chronic illness whereby overwhelming fatigue is often triggered by even minimal exertion. Imagine if something as simple as taking a shower left you feeling like you have run a marathon?

Fibromyalgia (FM) is also a chronic illness that causes widespread pain of the muscles, bones, and joints with specific trigger points. This can make moving parts of the body agonising. Both conditions are considered to be interrelated, with many people experiencing both.

It is estimated that 25,000 people in New Zealand experience these debilitating conditions, impacting their ability to function normally in society, often resulting in a loss of relationships, employment, and homes.

Onset of either of these conditions can be triggered by viral infections, stressful events, or chemical toxicity. Typical symptoms can be persistent physical and mental fatigue, cognitive impairments (brain fog), disturbed sleep patterns, muscle or joint pain, post exertional malaise, light and sound sensitivities, headaches, impaired temperature regulation, and feeling dizzy and faint upon standing.

Long Covid is a term given for those affected by a complicated recovery following the viral infection of Covid -19. These long haulers experience the same debilitating symptoms as people living with ME/CFS/FM. People in the UK have been turning to the ME/CFS/FM community for answers on how to live with this Post Viral Condition.