Chronic Illness Lessons Learned

Chronic Illness Lessons Learned This is a not for profit resource page for those with chronic illness syndromes in Australia.

Dysregulation. One of the hardest things about all of these types of syndromes is the dysregulation. What do I mean by d...
17/11/2024

Dysregulation.
One of the hardest things about all of these types of syndromes is the dysregulation. What do I mean by dysregulation?
The nervous system and body has natural processes embedded into it to keep us always in balance: to make us tired at night, to give us energy in the day, keep us warm when it's cold and cool when it's hot. In chronic syndrome conditions often these core mechanisms are thrown out of balance.
Living in this kind of situation, day in, day out, can be a path of incredible hardship; especially when the world asks you to put on a either a brave face, a mask, or maybe even denies that your condition exists (due to a lack of "concrete evidence"). So, if you have one of these conditions, I ask you: what increases regulation in your life? It could be anything from gentle excercise to good company, or time with loved ones. One of the greatest things I've found that brings regulation back into my nervous system is sharing openly with other human beings in an atmosphere of being real and honest. That is one of the core roles of the group (in person and online) I've created serves: what the space of this group allows us to do. Please get in contact if you are one of the many chronic syndrome sufferers on the Coffs Coast. Send me a private message or an email @ chronicsyndromesaustralia@gmail.com

Hi all. I'm opening the (very successful) local support group which started a few weeks ago for Chronic Fatigue, Fibromy...
08/11/2024

Hi all. I'm opening the (very successful) local support group which started a few weeks ago for Chronic Fatigue, Fibromyalgia and mystery Illness to more members.

Do you or someone you love suffer with chronic fatigue, fibromyalgia or a debilitating illness which defies diagnosis?
Living with these types of conditions is so challenging and can be deeply isolating, too. I've started a local support group so I can share what I've learned (over my 25 years of living with CFS/FMS) and support others to have a space where we can share openly about our illnesses with people who understand.
But this won't be a place to dwell too much on our negative experience, but rather to find ways to resource each other for strength, growth and opening our perspective to navigate these experiences with self awareness and grace.
This is a fortnightly gathering (Saturdays 2-4 in Coffs Harbour), but attendance will be flexible depending on your energy levels. I am looking for more people. Please register your interest by email at: chronicsyndromesaustralia@gmail.com

Look forward to hearing from you.
CJ

27/10/2024

Hi all. Regarding the chronic fatigue support group: someone with an email beginning with "RCmartin..." I have the wrong email for you.
Email me at chronicsyndromesaustralia@gmail.com if you want to be on the group email list.
Cheers

Around two weeks ago, I landed into a place I've wanted to be so long. I could tangibly feel health, relaxation, nourish...
06/10/2024

Around two weeks ago, I landed into a place I've wanted to be so long. I could tangibly feel health, relaxation, nourishment, and an absence of struggle on both a psychological and an immunological level. It was amazing. I called it a homecoming.
Then, recently, I went through the most heavy few days, emotionally and physically. Only when it happened, unlike previous years, I let it be (to the best of my abilities). It felt terrible, yet I didn't get involved with the mental and emotional patterns and only did the most fundamental things each day. Yet I knew this experience came directly from the earlier experience.
The way energy expresses has its own patterns.
My 'up' was such a diversion from my normal, that the following 'down' (a few weeks later) resulted. But if we remove the way we tend to view things from the picture, it wasn't even actually a 'down', but a breaking apart of the old physical, emotional and psychological patterns that stood in contradiction to the new space I'd entered. Now I'm another few days down stream from this experience, it's actually easy to see. I'm freed on a deeper and even more grounded level.
I suggest energy has its own economy.
The seasons change, the days are followed by night; we fluctuate in mood, energy and drive. It's easy to ignore all this and expect that we should always be 'on'; that's the culture, that's the human 'world'. But this fast paced 'progress' motive bears little resemblance to actual reality, especially not if you have a chronic illness syndrome.
So I say leave it where it is. Don't take it on.
I invite you to enter the Energy Economy; being with and being in touch with the way energy expresses and moves in your life. It really is such a gentler and more forgiving place.
Stand within the foundation of your life and learn what gives you energy and what takes it away, and then do more of the things which give and less which take. Chances are, if you have a chronic illness syndrome, you're already doing or moving toward this, instinctively. This isn't a shove to 'do' more, but an invitation to stand in a different space; one which bears more opportunities for growth, positivity and beneficial change.
CJ

Tending and befriending your illness.Your self.If a dear friend were suffering as I was, I would've been kind. I'd ask t...
24/09/2024

Tending and befriending your illness.
Your self.
If a dear friend were suffering as I was, I would've been kind. I'd ask them if they need anything, let them know that I was there to support them, unconditionally, but without the pressure of expectation. I would say something like "I know this is a really hard time for you, but if you need anything, just let me know. I'm just in the next room...but no pressure."
But it was me. It is me. This is the long, very, very slow (and repeated) lesson. To turn towards my illness, to befriend it, and hence myself. To be kind to the circumstances which have me suffering again and again.
When the chronic illness flares up, a part of us reacts in a knee jerk, survival response; how could we not? Fight the circumstances, run from them in fear...or freeze. It's natural. It's an instinctual response. I'm not talking about not having these responses, or the feelings that accompany them. I'm talking about widening the scope of perspective, of finding the loving kindness deep in our humanity and giving it to our circumstances: giving ourselves a break, softening the responses, widening our sense of self to be bigger than the illness. But not in a mental, competitive or 'getting it right' way. In a real, compassionate, gentle way. Kindness to pain, kindness to chronic illness. Kindness to self.
This is my lesson today.
I hope this message finds you well
CJ

For more than 10 years now, I've had jewels of wisdom related to being chronically fatigued. I've wanted to share these,...
30/08/2024

For more than 10 years now, I've had jewels of wisdom related to being chronically fatigued. I've wanted to share these, but been in the contradictory position of not having the energy to do so ;).

But I don't want to speak here about the black hole of my own suffering. Everyone with a Chronic fatigue story, fibromyalgia, chronic pain, long covid or a mystery illness knows this territory well: a black force of suffering which traps the light of your possible life.
I want instead to invite you to consider the Value of the experience. That's right, the 'value'. Not monetary value; but the value itself as a stand alone. Its a bright thing, which cannot be seen, or perhaps noticed at first (or maybe for many years) like the moon over the ocean in this second photo. A hidden light shining, via reflection, into the depths...It's not the shining sun of fame, worldly success, a high flying business life, extravagant holidays or even amazingly happy feelings of fitness and body based bliss.
So I call to you: if you have one of these conditions, ask yourself, "what is the value of my journey?" And give it the space to arise as an answer; not a quick, direct, shallow piece of information, but as a reflection on the long, short, or medium but inevitably painful journey you've been on.
If you want to discuss it, get in contact.
If you live in the Coffs coast area, come to the support group I'm about to create (and get in contact for details). My contradictory position is over, and I'm stoked to step out and share this work.
CJ

From the EarthInto the world...."Money may make the world go around, but it doesn't make the Earth go around....gravity ...
12/12/2023

From the Earth
Into the world....

"Money may make the world go around, but it doesn't make the Earth go around....gravity does." This quote from my unpublished novel captures something key to Chronic Illness syndromes...the need to find the 'Earth' again; in both ourselves and our circumstances.

I'm saying this to you as someone who started the day with my morning practice outside and lay in the sun. I came inside feeling so calm, full, complete, nourished...healthy! I ate breakfast, feeling the same calm. And then, I had to attend to a couple of worldly things. (Enter stage right: stress, irritability, digestion problems, nervous system frizzle). As I write to you, I feel thin, stretched out, anxious and like I've got 1/8th of the energy I had.

My point being: I entered the world and its ways, but came from my re-uniting with the Earth, which my routine delivered. The world is full of complex labyrinths of loops, hoops and distractions (and hidden walls). Im not certain that it isn't designed to take us off our path. (Neither am I certain it is...or, even, of anything really). But for me, the most important thing in this, is the understanding that my organism doesn't like being stuck inside behind a computer all day. It likes (and is used to) being outside, being quite, being calm, and breathing deep. To recover, the body needs Earth-ing. It certainly doesn't have to be ALL day; there's a lot to do. But finding a way to be Earth-ed will make us all a lot calmer, and happier, which leads to health.

Good: get up and stretch for at least 10 minutes before you start your day.

Better: get up and stretch and exercise in a light way for 20-30 minutes a day. Eat afterwards, then start your day.

Best: Find a type of movement practice (eg. dancing/tai-chi/yoga) that works best for you, then do this when you get up, before you start your day.

It's the way of the Earth-ing, Earthling.

The domestic grind...What part does it play in Chronic Syndromes? Well, for a start, if you have a Chronic Syndrome, it'...
07/11/2023

The domestic grind...

What part does it play in Chronic Syndromes? Well, for a start, if you have a Chronic Syndrome, it's rather hard to end up in a partnership, as a romantic interest is unlikely to desire to be your caregiver. And what if they need You, and you can't even get out of bed?

I see no more of an acute domestic grind than our phase of adulthood in this western (in this case Australian) world. It's natural to work and produce children in the middle phase of our lives, but this (literally from the perspective of both holistic Hindu and Chinese medicine) burns away our life-force.

This was probably a joy to us once: using the excess cream of the proverbial top of our fertility cup...Awakening at dawn to the kafuffle of cuteness bounding around the bed and begging to to be held in their innocence for another day in the great cauterwheeling nexus at centre of the cycle of life. Our mate would be there helping, and holding this....

But what about when there's no cream on the top of the cup....? When it's not even half full...? You're in a partnership with children and despite all your best efforts you both just inherently struggle, well, to maybe keep your cups half filled? That's our age, our modern era. What we're in now.

What is exactly the domestic grind...? I see it like this. When an animal is the wild, it has all its instincts in tact, and this gives it not only a massive sense of vitality, but also an inherent sense of purpose. When you domesticate an animal, you replace this with comfort and security at the expense of something else.

Personally, some of the hardest things I've ever had to deal with have taken place inside houses and within society. I have a sense of good will and balance in my character, psychologically, that makes competition and industrial perspectives difficult to swallow. I don't like it. It jars me, frustrates and irritates me, and turns me into someone I never wanted to be. Never mind people wanting to play chess with opinions...usually garnered from someone else's opinion. That's almost caused me to go mad, once or twice.

Anyways...the domestic grind is very hard when it comes to chronic syndromes in two ways: it promotes chronic syndromes through its application of unreasonable pressure on us, and it also makes it hard to be reasonable people because keeping up is maddening. I know and have heard to couples with these conditions co-inhabiting and living modern lives. I take my hat off to them, but it looks like a wild ride.
To conclude, I have no point to end this. This was an exploration, one I hope satisfied you, helped you in some way, or made you think of someone you love, or inspired you somehow. Ciao

Here I sit...typing.It's 1AM, last I checked. Insomnia, it seems, is one of the side effects of modern life - too much s...
06/11/2023

Here I sit...typing.

It's 1AM, last I checked. Insomnia, it seems, is one of the side effects of modern life - too much stress, too much activity, too much collective pain in our face. As I once wrote in a poem: "too much of never enough." The deeper forces which drive our culture are absolutely insatiable, and we at ground level pay the price ("Pay the Iron Price," As George Martin, Game of thrones author wrote - which basically refers to being fleeced by fictional Vikings.)

Chronic dysregulation: (inability to perform simple, organism maintaining activities like passing stools, peeing when we need to, eating a decent meal with appetite and satisfaction via a legitimate digestive process (and yeah, getting a solid nights sleep) are all signs and symptoms of Chronic Syndromes.

Does it mean you have one...? Not necessarily. For some, it's a lifestyle problem. But for others with sensitive nervous systems in an ongoing dysregulated eco-system, particularly those with trauma history. It may well be.

I had a love affair with Caffeine, then I graduated to some kind of marriage with coffee in order to get by and be able to write a few words down again in an orderly fashion. I jumped on and off the wagon, and felt guilty, particularly because the Acupuncture establishment upon which my health depended emphasised the draining and anxiety aspects of this particular bean, and its delicious result in a cup: Texas tea, black velvet gold...waking to the world with a whack of love...I could go on describing the intense love we had for each other.

In the end, the point was, I hadn't gone deep enough into the situation. We found someone (we, I suppose, being my Chinese doctor mate and I) who specialised in chronic syndromes and this is essentially what he said:

"For those with chronic syndromes, black coffee after breakfast is good in 3) ways. 1) Most people have really weak and dysregulated gut systems. It has a dual function of cleaning the gunk out and firing up the stomach into a state of acidity, so that you tend to digest food rather than use it to make toxicity. 2) Pre-amble: One of the hardest things (especially for me, compared to others I know) is the psychological aspect. of my chronic syndromes process. I suppose you could say being chronically ill for 25 years has made me slowly feel like I'm on a giant chess game with Satan that never ends. I work hard to make a gaining move, until the chronic pathogenic factor of me FMS/ME or whatever it is, adapts, and uses it against me. In other words...SATAN makes a better move, for 25 YEARS! (If that's not a psychological marathon, I don't know what is).
This gives rise to the 'bad-day/off-day' factor. Everyone has them. But if your tendency, generally speaking, is to have them everyday, coffee can help get you out of this spot.
3) Essentially there's is many ways to have a chronic illness syndrome, but the root is chronic dysregulation of the organisms capacity to maintain equilibrium (unstable, in other words) and the branches (so to speak) is the psychological feeling of entrapment in the situation, and in many cases, the body. Your kinda old before your time, really. The weather changes hit hard, your sensitive to light and sound...being in publica gatherings can cause meltdowns. Too hot, too cold....I guess that's me for the night.

Take care out there. If you've got one of these problems n you're hitting up the middle east news, I'd perhaps consider (at least) limiting your exposure to that stress as much as possible.

Defining the problem...mystery illnesses, sickness which has no cure...dysregulation of fundamental body systems. Hard h...
29/10/2023

Defining the problem...mystery illnesses, sickness which has no cure...dysregulation of fundamental body systems. Hard hitting health problems which debilitate, in one way or another, at least some of the time. I'm not speaking about mental health.

I'm speaking about US. I'm speaking about Chronic Illness syndromes in Australia: POTS, Lupus, ME, Chronic Fatigue, Fibromyalgia (my first diagnosis), Hyper mobility syndromes...Lyme's disease, sometimes.

I mean, illness used to make sense - it did in my grandparents time. You got old, you worked too hard, you were in a car crash...you got sick. It was natural. But what of all this mysterious, unexplanable, untreatable debility...? Sometimes from as young as 9- or 10. I've got mates it hit at 20 - 21 - 22 who live with it everyday, creak and move around like old men while living the best lives they can. It hit me at 14. I've never held down a full time job, not once in my life.

But my story is not so important, yours is...to me. There is a common thread to all these syndromes (syndrome: collection of symptoms). I'm sorry, but you don't have a disease, which say...antbiotics could cure. Wrong type of medicine. Chronic Syndromes requires chronic medicine. Long term, long reach...slow, sustainable, suitable.

Stay tuned.

Coffee dynamics:Can be beneficial for chronic conditions under certain specific circumstances. It must not have adverse ...
25/10/2023

Coffee dynamics:

Can be beneficial for chronic conditions under certain specific circumstances. It must not have adverse digestive effects or cause insomnia (or emotional outbursts).

Set limits: Have in first half of day when energy is building and keep it to just one.

Good, better, best: drinking as soon as you wake to function is (relatively speaking) good if it enables you to function.

Better is get up and eat, wait 10-15 while relaxing for the stomach to “receive” the food.

Best is get up and stretch or walk it excercise, then eat n relax then drink it.

Enjoy your day (and coffee if that’s your thing). You can apply the same principles to the drinks tea and cocoa.

😎

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