The ME/CFS and Fibromyalgia “What Would You Have Done Differently” Survey

when you get it right

you pass it on… Gary Snyder

When things go wrong, the “If only I had known! “, “If only I could have that back!” mantra shows up in spades.

If you could do it all over again – what would you do differently?

Of course, we all make mistakes – major mistakes – that we wish we could have avoided.

False assumptions or expectations are often the culprit.  We didn’t realize we were playing with a bad hand, didn’t see that train coming down the tracks. Basically we missed or didn’t know something.

We thought “this cold will go away”, “I can trust my doctor”, “Doing “X” surely won’t hurt me,” only to find out later that we were wrong. We carried on, sometimes blissfully ignorant of the fact that we were digging ourselves deeper and deeper into some hole.

Of course, hindsight is always 20/20. While hindsight can’t undo the mistakes of our past, it can help others to smooth their path, and make their journey through ME/CFS/FM a bit easier, and that’s what this survey is all about. These diseases are big enough challenges without us adding on unforced errors along the way.

This survey’s genesis is a 2013 post which asked, “Given what you now know, what would you have done differently on your journey with ME/CFS/FM?” A followup post was promised and, six years later, here it is. (:))

This survey is part of Health Rising’s Community Reports series…

The Community Reports: How to Manage, Thrive (or Just Survive) Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia

The Survey

The poll questions created from this survey are derived from the 100-plus comments the earlier post elicited. (Plus I added a few.) They cover doctors, treatments, stress reduction, relationships, finances and disability.

A little warning – that resulted in a rather long poll but it should go quickly. The results of the poll will be featured in another post (which will not take six years to produce).

Note that all poll answers are anonymous. There is absolutely no way to tell who provided what answer.

Feel free to suggest additions to the poll.

    •  Listened to my body more / stopped pushing so much
    •  Stopped working earlier
    •  Stopped trying to exercise earlier
    •  Stopped trying to meet family/friend/social obligations earlier
    •  Drastically changed my lifestyle earlier
    •  Would have charted my activity/energy levels earlier
    •  Asked for more help from friends and family earlier
    •  Been more careful not to overdo when I had good moments
    •  Found an ME/CFS expert earlier
    •  Made more of an effort to find a good doctor earlier
    •  Not stuck so long with doctors who weren’t helping
    •  Not accepted the advice of doctors who said there was nothing wrong with me
    •  Been more pro-active in seeking help from my doctor
    •  Not listened to doctors who said to exercise
    •  Not followed doctors advice who said I was just depressed
    •  Not listened to anyone who said they had the cure
    •  Stopped treatments that weren’t working earlier
    •  Not given up on some treatment options so quickly
    •  Not taken so many mainstream drugs
    •  Not tried so many off-label drugs
    •  Not taken antidepressants
    •  Taken antidepressants earlier
    •  Not taken pain meds
    •  Taken pain meds earlier
    •  Tried sleep meds earlier
    •  Focused on sleep hygiene earlier
    •  Have gotten a sleep study done earlier
    •  Focused on diet earlier
    •  Cut out sweets and carbs earlier
    •  Gotten tested for tick-borne diseases earlier
    •  Taken antibiotics earlier
    •  Would not have taken antibiotics
    •  Tried more supplements
    •  Tried fewer supplements
    •  Started LDN earlier
    •  Tried Cannabis earlier
    •  Gotten assessed for orthostatic intolerance earlier
    •  Gotten thorough thyroid testing done earlier
    •  Been assessed for joint hypermobility earlier
    •  Investigated mold issues earlier
    •  Have gotten a heart rate and/or HRV monitor sooner
    •  Explored mind/body/meditation type exercises earlier
    •  Trusted myself and been kinder to myself more
    •  Worked harder at not letting disbelief and ridicule regarding the disease get to me
    •  More focused on finding ways to be connected to life
    •  Gotten help with depression earlier
    •  Embraced spirituality earlier
    •  Allowed myself to have more fun
    •  Ended a toxic or unhelpful major relationship earlier
    •  Distanced myself more from people who weren’t helpful
    •  Expressed myself more about this disease to my major relationships
    •  Fought less with family members who didn’t believe me
    •  Insisted my spouse learn about this disease earlier
    •  Joined an ME/CFS/FM online community earlier
    •  Moved nearer family while I had the strength to do so
    •  Cut back spending earlier
    •  Devoted more money to savings while working
    •  Not spent so much money on doctors and treatments
    •  Learned more about disability earlier
    •  Paid into LTD insurance while working
    •  Applied for disability earlier
    •  Found a doctor who knew how to do disability
    •  Fought harder for long-term disability
    •  Would not have applied for disability
    •  Gotten a diagnosis of depression earlier in order to get disability
    •  Had a two-day exercise test done before applying for disability
  • Prior to Getting Ill
    •  Had better work/life balance
    •  Was more cognizant of how my body was doing
    •  Had a better diet
    •  Exercised more
    •  Engaged in stress reduction practices (meditation, being out in nature, etc.)
    •  Allowed myself to have more fun
    •  Reduced my toxic exposures
    •  Stayed less long in an unhealthy relationship

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