Imagine not being able to walk from your bedroom to the living room without feeling exhausted and needing to lie down again.
For tens of thousands of New Zealanders, that’s the reality of life with chronic fatigue and pain. Such illnesses can strike without warning and often affects busy, professional, high-achieving people who then struggle to cope with the massive disruption to their lives.
“Many of our members have seen great success in their careers, are intelligent, motivated and have experienced interesting and physically adventurous lives. Some strive for perfection – ‘A’ type personalities – and they are valued members of their communities. In short, they have a lot to lose,” explains Miranda Whitwell, Operations Coordinator for Bay of Plenty-based Complex Chronic Illness Support Inc (CCIS).
“It could be something as simple as a cold or a spider bite or just picking up a virus and then all of a sudden, they can’t get out of bed. Their body’s immune system doesn’t snap back into shape so potentially it’s running high all the time. And because it’s running high, the body is tired all the time. And it’s legitimate. It’s not in their head – these people are legitimately exhausted.”
When conditions such as chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), fibromyalgia, orthostatic intolerance, postural orthostatic tachycardia syndrome (POTS), and other post-viral illnesses arise, the wider family is also affected. Parents feel guilty at not being able to care for their children or earn a living, and family members can’t understand why their loved one is suddenly unable to function.
That’s where CCIS steps in to help. The charitable trust has been operating throughout the Bay of Plenty for 40 years and works alongside people living with chronic illnesses, teaching them and their families how to cope and get the best out of life.
“Our mantra is empowering people towards wellness. So we don’t want to come in and take over for them. We want to empower them to feel that they’ve got control over their own lives, give them some tools and some management techniques to deal with their conditions and their symptoms,” Miranda says.
GPs and other medical professionals refer clients to CCIS, and people can also self-refer by filling out a questionnaire. Not everyone has a medical diagnosis. Some people don’t want a label or to officially acknowledge they’re ill, while others find great relief in knowing what exactly is happening and that it’s not “all in their head”.
Miranda says about six per cent of the population will suffer from fibromyalgia and around 20,000 New Zealanders may have CFS/ME at some point in their lives. Some recover fairly quickly – while others endure for decades.
“Every single person is different. But we don’t want people to live in a state where their life is not enjoyable. So it’s about managing their condition. We try to help people learn how to move forward so they can manage themselves in a healthy way and are happy. Success is different for everybody – for some people, success is walking to the letterbox, success for somebody else is getting back to work. We have no judgment but we support everyone to make a few goals, reach them, then make a couple more. But we do it in a really supportive environment.”
CCIS has a team of field officers who work one-on-one with clients and their families, offering education, counselling and other resources. Group sessions and informal coffee groups are also held across the Bay where members can meet those facing similar challenges. CCIS hopes to soon roll out their successful ‘Towards Wellness’ programme nationwide.
Thanks to Covid-19, the 10 session programme can now be delivered online – opening up new opportunities to reach more people. Each two hour session covers a different topic: understanding the basics of CFS/ME and fibromyalgia, body systems, how to pace yourself, stress management, the journey of acceptance, nutrition, restorative movement, pain management, sleep support and how to continue the wellness journey.
BayTrust has recently granted $10,000 to help cover CCIS’ operating costs – money which ensures the trust’s ongoing survival.
“It makes a massive difference. Our field officers are funded but this money helps keep our doors open so we have somewhere for people to meet. It pays for the photocopying, our computers and the internet. It’s all those important bits – without that money the field officers can’t do what they do and help our clients.”
CCIS is currently supporting 249 Bay of Plenty residents and their families to cope with chronic illnesses, with thousands more in the community likely to be undiagnosed and in need of support.
Miranda says our lives often take unexpected turns but people who suffer from chronic illnesses can adjust to a new normal. “It’s about taking control of your life so that the symptoms don’t control you.”