Eternal ME Questions

Ashy said it might be entertaining (really?) to make a list of all those eternal ME questions.

Please do suggest questions I have missed.

  • What’s wrong with me?
  • When did this all start?
  • Why am I ill?
  • Am I doing too much?
  • Am I doing too little?
  • When will I be better?
  • Will I ever be better?
  • Is there ever a cure, or only remission?
  • Is this all in my mind?
  • What name do I call this illness?
  • Why doesn’t my doctor / therapist / physio / specialist / employer / friend / relative understand?
  • Is this crash/flare caused by xyz or is it just random?
  • Does this medication help?
  • Do these suppliments help?
  • How can I be so tired and not be able to sleep?
  • Why do I sleep so much?
  • Do I feel better because I did xyz, or did I do xyz because I felt better?
  • Am I getting worse, better or staying the same?
  • What was I talking about …?

13 Responses to “Eternal ME Questions”

  1. 1 Nina July 1, 2008 at 2:18 pm

    What can I do today to take EXTREME good care of myself?

  2. 2 ashysheela July 1, 2008 at 2:47 pm

    well maybe it is not VERY entertaining… mine all overlap with yours anyway but here they are!

    Do i secretly want to be looked after and am therefore making this all up to get attention?

    Do people think i am pretending? Do they care enough to have an opinion?

    Do I not do things out of habit when i could very well do them if i tried?

    Am i depressed or just ill and fed up?

    Why won’t doctors JUST TRY SOMETHING!?

    If i stop taking this vitamin (which seems to be doing nothing) will i feel worse, and will i have stopped just before it enabled my miraculous recovery?

    Do i do something i really want to do even if i know it will make me feel really awful afterwards?

    Why are the things that make me feel the worst and overdo myself the most the things that other people make me do, in the name of “helping me”?

    How many more times will I have to tell my life story?

    How much thicker can my medical notes get without any actual benficial treatment given?

    hmm better stop now before i get bitter and twisted 😉

  3. 3 rachelcreative July 1, 2008 at 3:15 pm

    Oh yes yes yes. Nina and Ashy I nodded and said “ur-hur” to these!

    I particularly liked the if I stop taking this suppliment will I be just one week off a miracle cure. Oh yes.

    It’s official – I’m not the only one.

    Ooooh – in which case …

    – Am I the only one who feels this way?

    – Maybe that theory about dental amalgam / MSG / non organic food / microscopic parasites / artifical sweetener / cortisol / adrenaline misfunction / NLP / not accepting god (etc etc etc) is actually right and am I keeping myself trapped in this illness?

  4. 4 ashysheela July 1, 2008 at 6:29 pm

    well yes, but even if we believe the theories may be true, getting the NHS to test us to check them out is another thing! which brings me to:

    Should i just ignore all research, advice and theories and the medical establishment as it will probably not make any difference to my health but may save me some time/money/energy?!

  5. 5 ashysheela July 1, 2008 at 6:30 pm

    P.S. Are we having fun yet? 😉

  6. 6 Rachel M July 2, 2008 at 12:39 pm

    “YES” to all of them. Every time I thought I put all these thinking behind, I find myself traped in these again when I go through flare up, payback, and you know…

  7. 7 rachelcreative July 2, 2008 at 1:18 pm

    Well “fun” might not be the right word. But it certainly seems to be striking a chord!

    So on behalf of Rachel M if I may …

    – Is the way I feel right now going to be permanent or is it just a flare/payback/random passing set of symptoms?

  8. 8 jowynn July 3, 2008 at 1:23 pm

    I would like to add the questions I have asked myself.

    – What am I supposed to learn from this experience?

    – What am I supposed to get out of this experience?

    – What purpose can this experience have for me and for others?

    Oscar Wilde wrote that being in prison for two years didn’t make him a better man, but it had made him a deeper one.

    – Is ME-CFS making me a deeper person?

    – What good has come from this experience? How does it benefit me?

  9. 9 ashysheela July 3, 2008 at 3:11 pm

    Oh yes i had not thought about this aspect: how have i changed? Am i deeper? No i don’t think so (always been quite deep!)

    but also

    How can i relate to people living healthy lives, and how has that changed? Maybe it has not changed much but their ability to relate to me maybe has… I find that some people have adapted with me and some just can’t… I am less tolerant of those that can’t. It is a bit like when i came out as a lesbian, some people felt they no longer knew me, some people didn’t want to make the effort to get to know me again, some relationships become stronger and new ones are made. An identity shift perhaps… that is certainly a benefit… an insight into disabled lives and identities which i never had before.

  10. 10 Barbara K. July 4, 2008 at 7:45 pm

    My question is:

    Why doesn’t someone just make it stop?

  11. 11 Michelle July 4, 2008 at 9:03 pm

    All very good questions.

    The one I ask the most is probably the “is this permanent and if not, when will I finally get better?” Cause, ya know, I wanna plan accordingly. 😉

    Though a close second is “why am I feeling worse today than yesterday when I haven’t changed anything?”

    Some other questions I ponder:

    How much more biomedical research has to be done before doctors/medical establishment quit trying to define this as psychological?

    Why won’t the CDC/NIH/MRC do more biomedical research?

    Why are biomarkers that were discovered a decade and a half ago still not being used?

    How do I describe what ME/CFS is to someone who has never heard of it before?

    Great post!

  12. 12 rachelcreative July 5, 2008 at 9:22 am

    Oh yes! Great additions!

    There’s also:

    – When people ask me how I am do I tell the truth or don’t they really want to hear that?

    – When I go out / visit people do I “fake it” and take the consequences or let the symptoms show and risk them being uncomfortable?

  13. 13 ashysheela July 6, 2008 at 10:29 am

    If i become well again what will i do with the rest of my life?

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