Our own, very personal definition of health

Our own, very personal definition of health

Yesterday I spoke at Perth’s ME and Chronic Fatigue Syndrome Society’s Support Group, housed at The Niche by The Centre for Neurological Support.  Chronic Fatigue Syndrome and Fibromyalgia are such unique diagnoses: it’s not just that we don’t really know why someone suffers from these illnesses, we can’t even narrow it down to one bacteria, one virus or any one cause.

In terms of our healing, the journey each of us takes between what science tells us is well and what it means to us personally to be in good health is like treading a slackrope hung between two palm trees we can’t remember planting.

In my own personal case the causes and the symptoms of my fatigue and pain were so intertwined that even if we had identified one main trigger (say, low iron) and treated it (which we did, by iron infusion) there were a whole heap of downstream effects that needed caring for too, even simply the stress that results from being unwell for so long.

I do advocate finding a doctor who understands you and will work with you to find out what is wrong.  And yet there is only so far I find I can go with my doctor.  If my doctor considers the absence of a clear problem as his definition of “OK”, then he will pronounce me just fine.  Or say he doesn’t know.  He has done his professional duty – he can see nothing that western medicine knows of that will kill me and that is as much as he can do.

But I know my body and I know when it isn’t quite right.  Alternative therapists or a GP with a slightly different angle on health will give me more useful pointers to make me feel more well, rather than just treating what is wrong.

And yet even then there is only so far we can go together.

My perception of being well and “over” chronic fatigue may be different from yours.  As I spoke about yesterday, and as I have shared with other support groups, I consider myself completely recovered – and yet my life is completely different to what it was five years ago.  Were I to go back to working six days a week on a construction site maybe I wouldn’t be so well.

Why not?  Well, the stresses on my body would be different: my sleep patterns would change, I would have to focus on particular tasks at particular time, my holiday times would be different.  And so too the people I spend most of my day with would change completely.  The overall intention for my life would not be what it is right now.

So perhaps it is not that I am recovered, but I am through it.

Yesterday we opened the discussion by identifying our question for Chronic Fatigue.  They included: What is physiologically wrong with me?  Why am I like this?  What is the cause?  What can I learn from this?

Mine was: How can I enable people suffering to give themselves permission to get the care they need and find new possibilities for feeling well, wherever they are at?

While there are many common aspects to health, the internal, subjective experience for each of is, as Deb Zucker of Vital Medicine highlights in the work I have been lucky enough to see her do on integral medicine, different.

Even when we all identify with the same illness by name, what is going on for us is different.  That experience also changes with time.   When I was very ill, in the beginning I wanted to know what was wrong with me; I wanted to know “Why?”

As acceptance arrived, the question became “What needs to change?” and then to “And what do I need now?”

Once I gave myself permission to give my body and myself what it needed, I was able to ask “What opportunities are there for me right now?”  and then something more like “What do I choose right now?”

If we know the question we have for our health we can find a physician who can help us answer that question.  We can recognise when we pass into a new phase of understanding of our health, either by realizing we have answered the question or by finding that the question is Mu – no longer relevant in the way we are asking it.

Stay abreast of medical knowledge.  Know where you can get help when you need it.  And in the meantime, enable your own progress by asking questions of yourself, taking time out to give yourself permission to get the care you need.  And ultimately, continually explore the possibilities for what wellbeing means to you, right now.

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  • Apathy « Halfway Between The Gutter And The Stars
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