How to Understand Someone With Chronic Pain

Status
Not open for further replies.
What is thou .... without weight to bear
Yesssss...!. - heavy seeming limbs from fatigue, heavy mind from fog, heavy from the amount of symptoms, and triggers and treatments, and the big grumpy imp and the night mare of the painting suggest heaviness on the mood and even the soul....

Fortunately I have a Power in mood and soul that carries all that heaviness...
 
Thank you, I'd hoped my post not come across as pretentious after a few drinks, your final sentence a is a nice focus for awareness. In the tradition of zen I shall use it during practice. As a glass half empty I need to learn how to understand.
 
In the tradition of zen I shall use it during practice. As a glass half empty I need to learn how to understand.
Great! 👐
I remember getting a riddle in my teens I later learnt was a kind of kōan, similar on happyho:

"A great philosophical official, Riko, once asked this strange Zen master, Nansen, to explain to him the old Koan of the goose in the bottle. ” If a man puts a glossing into a bottle” said Riko, ” and feeds him until he is full grown, how can the man gets to goose out without killing it or breaking the bottle?” Nansen gave a great clap with his hand and shouted, “Riko!”
“Yes master” said the official with a start
” See, ” said Nansen, ” the goose is out!”
It is only a question of seeing, it is only a question of becoming alert, awake, it is only a question of waking up. The goose is in the bottle if you are in a dream, the goose has never been in a bottle if you are awake. and in the dream there is no way to take the goose out of the bottle. Either the goose will die or the bottle will have to be broken and both alternatives are not allowed: Neither the bottle should be broken nor has the goose to be killed. Now a fully grown goose in a small bottle … how can you take it out? this is called a Koan.
A Koan is not an ordinary puzzle, it is not a puzzle because it cannot be solved. A puzzle is that which has a possibility of being solved. You just have to look for the right answer. You will find it – it only needs intelligence to find the answer to the puzzle, but a puzzle is not really insoluble. A koan is insoluble, you cannot solve it you can only dissolve it. And the way to dissolve it is to change the very plane of your being from dreaming to awake fullness."


To me in that kōan sense, your glass is half full. Building on that it is full.
Dissolving the problem is one way of seeing it, looking back to it. But in my life the problem dissolved best and automatically when I was able to take a leap of faith to the solution. I'd long known of being in the Here and Now. But it was the image of standing safely on firm ground before a chasm that suddenly brought it home and finally relieved anxiety in 15 areas, starting with my fear of height (now down from 80% to 1%). Only after that clicked did I realize it was the concept of Here and Now.
Dissolving my fears = inner films of what happened in the past or what could happen in the future can work, but done in the wrong way we get triggered and stuck. Like do NOT think about pink elephants. Do NOT be afraid. "Just relax!" "Be spontaneous!" Yeah, sure!?
There are ways I do manage and even have to dissolve inner films: One is submerging myself into my pain, which I learnt when coping with social anxiety (face - accept - float - let time pass), and is very useful now - it then loses all meaning and suffering, realizing that distraction made it worse, when I concentrate on it. Another is decelerating my chatterbrain at night like turning a spool of film slower and bringing it to a stop on a frame, but holding it there. A third is after I've dreamt or imagined a catastrophe to turn the spool backwards again. A fourth reimagining and reframing (nightmare therapy: seeming sharks become dolphins, someone chasing me becomes someone bringing me my wallet back etc., falling becomes flying etc.)

I'm now trying to think thru why I was plugging "the leap of faith to the solution" first and now have found many examples how I try to "dissolve the problem"....:

In the case of direct fear of what might happen (fall etc.) I can do this as well, I can face and 'surf' on the panic and dissolve it (or partly). But usually now I try to concentrate more on the sensation that I am safe Here and Now. And Now. And Now. That's reminding and practicing and habituating at the same time.
Ah, I think there's a time when this is too late, when the panic is too big, maybe that's when I go into dissolving mode. And then swing back to the faith/mindfulness.

Many things need to be learnt, practiced, become a habit, but it's much accelerated when the solution to a mind screw suddenly "clicks", we finally make a firm unwavering decision to see it that way, and then can work thru it and refinish all the bits left by practice and habituating. The fundamental one there is probably again Radical Acceptance.
That may be why I nowadays am able to implement new habits after 3 repetitions instead of 30. What hampers self-discipline somewhat is all the flow in my head, all my new ideas, which is however very useful for enjoying life to the full, good days or bad, so that's OK for me.

May our internal glass always become so full that we can dissolve the external ones some day... 👐
 
That's a nice way of putting it, I have listened to some Zen tracks this year and it is an interesting approach. Occasionally over the last few years I've reminded myself of those few times when something got through and shifted my perception.
 
Just remembered that we forget the big role of sexism so much in "not being understood" (as well as the other forms of discrimination). Something that @cookiebaker brought up recently in two posts on the thread about how to talk to docs here and here.
I'm pretty sure that me being male is one of the reasons that all(?) my docs in the last 3 (10? ) years take and have taken me seriously.
But one of the reasons for my first rheum (male) to say I don't seem/look like I could have fibro....

So it may be helpful to take a male advocate with us to certain appointments. Maybe it's just a witness being there, but maybe something else.

And to realize that everyone, including ourselves (m/f/d), may not be fully "understanding" females/ ourselves with these conditions, for this reason. So generally we (non-m) all the more need to believe ourselves and stop carrying on pushing thru to prove we can if that's an issue (non-m).

More specifically be wary of, forgive each other for and lean up against these age old prejudices whenever relevant / opportune....
 
Just remembered that we forget the big role of sexism so much in "not being understood"....
Thank you, Jay..
and yes, i do agree that we do tend to forget about it.. like to think we have moved beyond it, when in reality, it is alive and well and still very prevalent in so many aspects of this thing we call life.
I think, having spent the majority of my adult life in male dominated jobs/hobbies, that i tend to spot the behavior a bit more quickly than most would - it can be very subtle and easy to miss, but it is there none the less.

Now, dont get me wrong.. i do not call it out every time i see it - unless it is really blatant - but i am aware of it, and often adjust how I behave because of it. Sometimes this happens without me really even being aware of/thinking about it..
 
Looking for fibro humour on youtube for the other thread and mainly coming up with 3 meme videos for that I also found a few short "understand" videos that are OK to 'show people':

1CBULIcf9MU Fibromyalgia: Living with chronic pain - BBC Stories 8 mins. (with "pain visualizations")
-KHKFV2cR0s "Embarrassing" Symptoms of Fibromyalgia We Don't Talk About 1.5 mins (TheMighty)
eqpwb1VMCzk Fibromyalgia Patients Stories Awareness Day 2022 video. 4'.
aN_CLjdcV78 What It Feels Like To Live With Fibromyalgia 14'. Typical scenarios commented by Olga Chronics.
Od5cveTGWP4 What it really means to have chronic fatigue | Fibromyalgia Awareness Month 7'.

And not really to 'show'...:
T0v4ujN5do8 Explaining Fibromyalgia to humans. Guy 'shouting' it out - like we sometimes want to. 6'. (tender points error)

For our physical therapists, but if they'd listen to this they wouldn't need it, as they'd be listening to us:
AnnZJs9oqjw Fibromyalgia Massage, Do's and Don'ts, Funny and Informative. 6'. (For me personally too gentle...., but good starting point.)

Excellent for our own understanding, I think:
BcciJwHyMw0 Fibromyalgia & Temperature Sensitivity // Why We Can't Regulate Our Body Temperature 11' by Olga Chronics, an amateur, but well researched.
7Pa0Yod5rfo Dysphagia And Fibromyalgia - How Are They Connected? 6'
(Quite OK too LbJCkpuEI2I 10 Good Things Fibromyalgia Gave Me // The Upside Of Living With Chronic Pain by Olga Chronics 13')

My favourite long "introductions to fibro" I've mentioned before:
aprthkmlE2Q Fibromyalgia: It's Real, It's Manageable, What You Can Do Andrew Gross (UCSF Rheumatology Clinic Director) 2011 87' (UCTV)
NnXh9dnzYgE Rachel Lynch (Arthritis Ireland summit 2019), preferred by me over the talk of et2yca1g0sM Andrea Nicol.
3bz0ivRYTR8 is the Arthritis Ireland webinar 2022, and of these new talks I personally find
the psychological one from 1h21 on about brain, nervous system, trauma responses (fight flight freeze fawn) excellent, but the one before about specific woman problems will probably be an interesting take for many "non-males".
The psychological one is by Caroline Martin and has to break off, we can see what she was going to say in the contents at 1h03-1h04, which are "Strategies to sequentially respond to: PILES, standing for physical (activities to respond to), intellectual (activities... etc.), language based, emotional based, social. Her 5 own videos on "The Power of Us" won't be helpful for us or for that. PILES is usually applied to child development and what I conclude what she might have been going to say is that it's important for us to carry on developing on all 5 of these areas.
 
The Arthritis Ireland webinar made me look for other good videos from the last 12 months....

The best (and most detailed, up-to-date, sensible) is
A3Bj7vbUnsg Emma Guymer: All About Fibromyalgia 58' (42'+16' questions):
Co-morbidities & "groupings"; central sensitization; changes in the body; what helps.


These are tolerable, but not that good:
sT2NJyZKGDs Rhesus Medicine 7' (the 4 subtypes at min. 4' are not recognized)
yDNMhXX1tow Dr. Justus Fiechtner 26' + 15' questions (the 2016 criteria are presented completely wrongly)
qzTBLYjgvrw Understanding fibromyalgia 68' by UHD NHS (OK, bit boring)
 
Status
Not open for further replies.
Back
Top