What makes a good fibro Warrior? What are we Fighting for?

“Warrior” sounds like we are fighting. :bow_and_arrow: And we certainly are struggling, trying to keep our energy up to do things, we certainly are often courageous :muscle: and … we have fibro.
But we sometimes feel we are fighting fibro. This could mean seeing it as an enemy that has robbed us of our true life. It could mean overdoing it like in our old life in spite of the backlash flare we can expect.
I think of FM more as my body teaching me to self-care, telling me what it desperately needs.
I am still a warrior in that I am continuing to live life to the fullest (no longer defined by lots of activity or providing) despite it, not because I am fighting against it.
I am “fighting” for my body, so it doesn’t need to complain as much, i.e. putting as much energy as I can muster in defending it against all triggers. In some cases that may mean I decide that a pain is a mislead/-ing warning sign which I can go up against and reinterpret. In my case/s this hardly ever works or rather - I do this so naturally, having done lots of CBT etc., that no false warning signs come up, leaving me certain that my local pains and overall Ache are both real warning signs, the local pains that physio needs to help, whilst supps and keeping to the sweet spots can contain much of the Ache.
Maybe this can be criticized as naive reframing, but I think it’s the main way, at least for getting as much change as possible, more than letting off steam about how bad we’re feeling, see my bit about self-motivating here.
Agree? :grinning: Disagree? :upside_down_face:

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Agree! Becoming the warrior you describe puts into words what I strive for. However, I still struggle to pace myself, even know from years of living with fibromyalgia it is key. I have a bad day and I grumble a bit and lay low. Then I have a good day and I go go go - causing a roller coaster effect. Good days, bad days :roll_eyes:. Your post was inspirational and reminds me the importance of balance and listening to my body. Sometimes heading it off before it can start flaring at me. Pacing ourselves during the holidays is tough!

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Give and/or take

We feel incomplete if we can’t provide, esp. in our traditional roles as men. But (“even” as men) we can (learn to) give love, deep relationship, quality time instead of quantity of time & money & things. In 10 or 20 years none in our family, young or old, will wish or be proud that we had given them more things, they will wish or be deeply glad we had given them love. They will be glad & proud that we did this with all the inner “strength” we have left, however much that is, in the face of our deep ailments. These will be the good memories, this is the light we make in our tunnel. I didn’t need my dad to fuel his blimmin car, I (would have) needed him to talk more to me about people, the world, God or not, pain, himself, me, to show me how to give and take instead of just providing for me, how to be happy, to enjoy life in spite of dire financial or health straits…

And we - whether good Christian souls or ethical atheists - always think we need to give give give… That’s not true . Firstly, we are to love our neighbours as ourselves. We are to give to the needy, which in this case is us ourselves, this is a condition where we need to learn to self-care first and foremost - to live, to enjoy life, to progress by working on our bodies & minds.

So if we are sorrowful that we can’t give, but not able to allow ourselves to take, we are not giving to the needy. And our kids are learning that from us - “Cat’s in the Cradle… We’ll get together then…”

Secondly, we need to learn to take - with love. If no one learns to take and be thankful and show this, then all giving is nought. It needs both sides, not to complete the picture, but to have a picture at all.

Thirdly, real taking is giving. Opening our eyes to our surroundings, looking into the eyes of the other person bonds us, feeling them in our hearts, feeling what they are and give us, and telling them so. Have we told each of our loved ones we love them today? Have we told them what’s so good and lovable about them? Have we thanked them for all this they are “giving” us just by being there? We have " given (real) life" to our kids (whether own or not), family and everyone by doing this. This isn’t “just existing”, it is putting The Life and The Love into this existence.

Fibro does not necessarily / usually get easier, better by itself . We don’t get used to it without trying. We can suffer on and on, make life and our condition a misery for ourselves and everyone around us. That only gets easier and better if we open our eyes and change our outlook. This can become our new life, new self and can be a better one than our old one, which drifted or sped past.

Which incidentally may have lead us to getting here in the first place.

“We” includes me, of course, in all points…

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not sure this is the place to say this…but its what came to my mind as i was reading. Most of my friends and family have some kind of chronic disease or pain. I listen to them when they whine or cry, when they want to gripe or want to talk. But if I PERSONALLY say I’m having a rough day, not a one of them asks why? or says “sorry to hear that”. Is that strange? or is it because you cant visually see fibro.

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I think it’s a perfect place to say this (wdnt matter even if it wasnt tho).
Maybe it’s because…

  • they can’t see it, it’s hard to point to something and also
  • we can’t see it: Like when little kids start bawling only when they see blood… :wink:
  • something about fibro allows us to be strong and keep smiling when around others - e.g. too much cortisol from this - but break down afterwards & avoid going out, due to that overload.
  • we are so tough that we say “I’m having a rough day” and don’t whine or cry publically,
  • suffering quietly like dogs makes the pain much easier actually, maybe the better way of coping,
  • our pain/suffering is just not the type that makes us whine, for some physiological resasons.

See the pic/memes collection for all of these: Pics & Memes that visualize fibromyalgia and other invisible chronic pain illnesses. Still haven’t continued cos it’s been quiet here… (Anyone want more?)

This is on the lines of what I was thinking about: As opposed to people with R.A. our pain is mysterious even to ourselves and that makes it stranger and more difficult to cope with than ‘conventional’ illnesses.

Pain mystery score beliefs: a comparison of fibromyalgia and rheumatoid arthritis


Objectives. To compare the mysteriousness scores of the Pain Beliefs and Perceptions Inventory in fibromyalgia. Methods. Two cohorts of patients, one with fibromyalgia (FM) and one with rheumatoid arthritis (RA), completed the Mystery Scale component of the Pain Beliefs and Perceptions Inventory to determine whether subjects in the two diagnostic groups had significantly different scores on the Mystery Scale. Results. A total of 126 subjects (64 FM, 62 RA) completed all questionnaires. The FM group had a greater percentage of female subjects, more severe pain, more severe anxiety, more severe depression, and a higher perceived injustice score. When the RA and FM group scores for the Mystery Scale were adjusted for age, sex, pain severity, HADS scores, and perceived injustice scores, the FM group still had a higher Mystery Scale score. Discussion. Fibromyalgia is associated with a higher level of perception of mysteriousness in the Pain Beliefs and Perceptions Inventory than is seen with rheumatoid arthritis. This difference appears to be independent of levels of pain, depression, anxiety, and perceived injustice. This sense of mysteriousness may reflect a lack of understanding of pain in fibromyalgia as previously reported and may be an area to be addressed in therapy.

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