Australians who were watching TV in the 80s will know the answer is chunky custard or yak fat. (TV comedy reference)
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NZ - Complex Chronic Illness Support - Towards Wellness course
- Thread starter Hutan
- Start date
Update From CCI Field Officer Kira Follas. (public post on their fb page)
"The CCI approach to ME/CFS/FM/POTS. Psychology is one piece of a much larger picture.
When I first became chronically ill, I found it personally very hurtful when people insinuated that my illness could be psycho-somatic. Somehow it made me feel like I was making it all up or just trying to get attention, when in actual fact I was so debilitated I could barely raise my head off the pillow. So it’s really important for our membership to understand that we regard ME/CFS/FM/POTS to be real. They are very real physical illnesses! You cannot think your way out of these illnesses. Mindset and psycho-education can be helpful part of your wellness journey but they are only one factor; one piece of a much larger picture.
Our intention is to support you through this journey as skillfully as possible, empowering towards your potential for wellness; mind heart body and spirit. Drawing from the work of many specialists and clinics around the world, we work out of a holistic wellness model that includes areas such as but not exclusive to; systems of the body, nutrition, pacing, restorative movement, calming the stress response, sleep, breaking the pain cycle and your support system. Wellness stems from an increased awareness that leads to healthy choices. And ongoing healthy choices help us to create the sustainable and balanced life that is deal for you.
With each of these areas we need to take into account the way our brain operates. For example, we can eat the best nutritious diet in the world BUT if we do so in a stressed state we will use those vital nutrients faster than we can get them in AND any left over nutrients will be excreted from the body. Not to mention our digestion will be impaired making it difficult to extract the nutrients in the first place.
How about pacing? If we stay stuck in achiever and perfectionistic patterns we will struggle to pace in a way that supports remission. Same for restorative movement. If we engage in movement, pushing and driving our body to do more than the body can handle, we can do more harm than good.
Wellness starts from a wellness mindset. If we believe there is room for improvement we are more likely to find our next steps to facilitate that improvement. Conversely if we think we are stuck until there is a ‘pill to cure our ill’, we thwart our ability to see possibilities in the NOW to help us move forward.
Our body has a remarkable natural capacity to heal but in order to do this we need to be in a healing state. So generating ideas on how we can facilitate our body into a relaxation response is an vital part of the process.
We also need to learn to be our own best friend and start collaborating with our body, instead of fighting against it. Wellness requires us to ‘know ourselves’ at a deeper level so we can catch outdated energy-depleting patterns, such as helper and achiever patterns, before they catapult us back into relapse.
Moreover, there is no other time in ones life, where grief is so prevalent and so ongoing. It is like the life we had prior to getting sick has been stolen from us. Hence the importance of understanding this grief process, so we can assist ourselves to move into acceptance. Acceptance brings peace, we stop fighting against our reality, and we naturally move into the healing state I just spoke of.
So to clarify, the complex chronic illnesses we support are very real physical illnesses AND by taking a holistic approach, including in part, how we psychologically operate, we can better support our journey forward.
So we invite you to get curious and access the information and support you need to increase awareness of what you can be doing to help yourself and your precious body today.
Welcome to CCI Support where we empower people towards wellness."
When I first became chronically ill, I found it personally very hurtful when people insinuated that my illness could be psycho-somatic. Somehow it made me feel like I was making it all up or just trying to get attention, when in actual fact I was so debilitated I could barely raise my head off the pillow. So it’s really important for our membership to understand that we regard ME/CFS/FM/POTS to be real. They are very real physical illnesses! You cannot think your way out of these illnesses. Mindset and psycho-education can be helpful part of your wellness journey but they are only one factor; one piece of a much larger picture.
Our intention is to support you through this journey as skillfully as possible, empowering towards your potential for wellness; mind heart body and spirit. Drawing from the work of many specialists and clinics around the world, we work out of a holistic wellness model that includes areas such as but not exclusive to; systems of the body, nutrition, pacing, restorative movement, calming the stress response, sleep, breaking the pain cycle and your support system. Wellness stems from an increased awareness that leads to healthy choices. And ongoing healthy choices help us to create the sustainable and balanced life that is deal for you.
With each of these areas we need to take into account the way our brain operates. For example, we can eat the best nutritious diet in the world BUT if we do so in a stressed state we will use those vital nutrients faster than we can get them in AND any left over nutrients will be excreted from the body. Not to mention our digestion will be impaired making it difficult to extract the nutrients in the first place.
How about pacing? If we stay stuck in achiever and perfectionistic patterns we will struggle to pace in a way that supports remission. Same for restorative movement. If we engage in movement, pushing and driving our body to do more than the body can handle, we can do more harm than good.
Wellness starts from a wellness mindset. If we believe there is room for improvement we are more likely to find our next steps to facilitate that improvement. Conversely if we think we are stuck until there is a ‘pill to cure our ill’, we thwart our ability to see possibilities in the NOW to help us move forward.
Our body has a remarkable natural capacity to heal but in order to do this we need to be in a healing state. So generating ideas on how we can facilitate our body into a relaxation response is an vital part of the process.
We also need to learn to be our own best friend and start collaborating with our body, instead of fighting against it. Wellness requires us to ‘know ourselves’ at a deeper level so we can catch outdated energy-depleting patterns, such as helper and achiever patterns, before they catapult us back into relapse.
Moreover, there is no other time in ones life, where grief is so prevalent and so ongoing. It is like the life we had prior to getting sick has been stolen from us. Hence the importance of understanding this grief process, so we can assist ourselves to move into acceptance. Acceptance brings peace, we stop fighting against our reality, and we naturally move into the healing state I just spoke of.
So to clarify, the complex chronic illnesses we support are very real physical illnesses AND by taking a holistic approach, including in part, how we psychologically operate, we can better support our journey forward.
So we invite you to get curious and access the information and support you need to increase awareness of what you can be doing to help yourself and your precious body today.
Welcome to CCI Support where we empower people towards wellness."
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Invisible Woman
Senior Member (Voting Rights)
Hi @SamF, welcome to the forum.
I have done many if not all of the things you describe. The most significant difference made to my life-
1. Poorer from funding
2. Deterioration in health, because I really needed to stop and rest rather than participating in programs that actually weren't curative.
I have done many if not all of the things you describe. The most significant difference made to my life-
1. Poorer from funding
2. Deterioration in health, because I really needed to stop and rest rather than participating in programs that actually weren't curative.
Daisybell
Senior Member (Voting Rights)
Holistic models of treating chronic illness are used INSTEAD of care in the context of socialized health care system. The governments call this health care and shouldn’t we be happy? The mere action of driving to group therapy, being exposed to noise, having to sit and listen to coping strategies and what nots, listening to questions regarding XYZ therapies is aggravating to me.
Holistic models of care does psycho and social, and emphacize the self-management as the key, but leave the bio behind. They may even blame the patients for not getting better.
There is no need to take the patients into a revolving door of unproven treatments and half baked explanations on why we got sick. (Childhood trauma anyone?)
Edit to add: views are mine and mine only (unless you agree, then views are ours
)
Holistic models of care does psycho and social, and emphacize the self-management as the key, but leave the bio behind. They may even blame the patients for not getting better.
There is no need to take the patients into a revolving door of unproven treatments and half baked explanations on why we got sick. (Childhood trauma anyone?)
Edit to add: views are mine and mine only (unless you agree, then views are ours
)
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The post by Kira Follas perhaps sounds reasonable and well-intentioned at first read.
The mother who worked is the Type A personality; the mother who stayed at home is the helper personality. Both apparently need to fix these aberrant patterns in order to move towards wellness (when in fact helping others and achieving things are the very things that make life meaningful).
I'm not against workshops on pacing or even nutrition for those who think that they need that.
But I am concerned that people with hand-wavy theories about what this illness is, or what we as people with ME should do about it, express their views with unwarranted certainty. Once you have convinced someone that they have this illness because their mother was not caring enough or they pushed themselves too hard or they aren't thinking positively enough, then action is focused inward. It makes that person vulnerable to all sorts of quack theories and expensive programs like variants of the Lightning Process. And even if the promises of recovery aren't explicit, they are strongly implied, to people desperately clutching at straws. (Just read the first post in this thread again.)
Kira Follas said:
Kira Follas said:
The mother who worked is the Type A personality; the mother who stayed at home is the helper personality. Both apparently need to fix these aberrant patterns in order to move towards wellness (when in fact helping others and achieving things are the very things that make life meaningful).
(Hmm. I thought the problem was that we have autophilia?)Kira Follas said:
I'm not against workshops on pacing or even nutrition for those who think that they need that.
But I am concerned that people with hand-wavy theories about what this illness is, or what we as people with ME should do about it, express their views with unwarranted certainty. Once you have convinced someone that they have this illness because their mother was not caring enough or they pushed themselves too hard or they aren't thinking positively enough, then action is focused inward. It makes that person vulnerable to all sorts of quack theories and expensive programs like variants of the Lightning Process. And even if the promises of recovery aren't explicit, they are strongly implied, to people desperately clutching at straws. (Just read the first post in this thread again.)
. I agree Milo.
The reality is that we have way too few medical professionals looking after people with ME well, and way too few researchers focusing on things that may make a difference. If we think that 'we just need to fix ourselves and we'll recover', and when that doesn't work, we think, 'we just need to try harder to fix ourselves and we'll recover', and if we lower our standard of what 'recovery' actually is, and if medical professionals just hear 'when those people calm down and eat and sleep better, they recover', then the lack of useful medical care doesn't change.Kira Follas said:
Daisybell
Senior Member (Voting Rights)
I have accepted my situation. I’ve done my grieving. I’ve changed my life. I’m still slowly deteriorating.
People like this just make me really angry. The relentless positivity message and the harm it can do.... the blaming and shaming....
Okay - I’m letting it go now!
People like this just make me really angry. The relentless positivity message and the harm it can do.... the blaming and shaming....
Okay - I’m letting it go now!
It's not just socialised health systems that do this. Doesn't the Mayo Clinic in the USA insist on CBT/GET for ME/CFS? And aren't people having to fight their health insurance providers to get ME/CFS recognised as a physical illness and to remove CBT/GET, and isn't alt med thriving in the USA?
TiredSam
Committee Member
For me to stay stuck in achiever and perfectionistic patterns, I have to be in them in the first place. How does the author of this know that this is the case, given that I'm on the other side of the planet and they have never met me. What is this assumption based on?
Ah. Does this imply that ME was a result of my choices? Oh dear, must be my fault then. There was me thinking I was just unlucky and it could have happened to anyone. Thanks for clarifying that, I'm sure my newfound guilt will help me on my path to improvement.
I'm afraid whoever wrote this did not take account of the way my brain operates.
Our body also has a remarkable capacity to make us ill and kill us, irrespective of whatever state we try to imagine ourself into.
Actually my body started fighting against me. My body started it, really.
Well that's true. I have accepted that ME is not my fault, I need to live within my limits, and that I have unfortunately got an underfunded and underresearched illness which makes me a natural target for every passing woo-peddlar and psychobabbler. I bear my lot with great fortitude and occasional grumpiness, which, seeing as I'm my own best friend, I don't beat myself up about. That ok?
Thank-you. I never thought of getting curious before.