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No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
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WHY do we PUSH ourselves...

Discussion in 'Lifestyle Management' started by dannybex, Nov 5, 2009.

  1. dannybex

    dannybex Senior Member

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    This is a spinoff from a thread over on the XMRV section, where we started talking about pushing and crashing. I meant to start this 2 weeks ago...but was crashing too much! :(

    Anyway...

    Why do we push ourselves, especially when or if we have the choice of not pushing,...knowing full well that we will undoubtedly CRASH big time?

    Certainly there a many who are so severely ill that they are bedridden and just sitting up, or trying to stand up may be the equivalent of 'pushing' or 'overdoing it'. And some of us have virtually no outside help, so we're pushing just by making lunch, or taking a shower, etc...

    But there are also many of us who aren't quite as disabled, and have known for years, if not decades, that pushing, overdoing it, in whatever form it may take, will lead to a crash that may last for hours, a day, or even a relapse that can last for weeks, months, or in some cases, longer. In any case it's a setback...sometimes severe.

    But we still keep doing it.

    And now with the news that the XMRV retrovirus is turned on by, among other things, stress hormones...why do we keep repeating this pattern that we know is harmful?

    Is it that 'anxious driveness' that we talked about on the Lassesen thread two weeks ago? Is it because we feel like life has passed us by and we have this desperate need to catch up? Does it come from losing one's self-respect from years of being so ill (and so ridiculed)? Pacing oneself and setting limits requires discipline of course...but it also requires self-respect and self love, doesn't it? Do we lose that as we become more sick?

    Ironically, just posting on message boards for me has become so draining during the past 8-9 months. But I still do it from time to time. Being so isolated I tell myself it's my way of reaching out, of trying to keep from fading into complete invisibility...but at the same time, I also waste too much time reading the news, checking out youtube...things I don't have to do. I also stay up too late every single night (although I was good for about a month last January...went to bed at 11pm and felt much better then). Lately it's been more like 12:45-1:15am...then I feel so much worse in the morning, I get up later, eat meals later, and the cycle continues.

    So...why do you think we fall into this trap -- why do we keep pushing ourselves when we know it will set us back?

    Dan

    p.s. Any suggestions that have helped you turn this around and stop this push-crash cycle are also greatly appreciated...
  2. Sing

    Sing Senior Member

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    Over-riding the limits

    Dear Dannybex,

    I'm doing a lot of the same stuff as you and for the same reasons you mentioned. Thanks so much for writing about it. You are carrying a voice of compassion by naming and questioning it. Right now it is 11 pm and I'm typing out this message when I should have been stretching and silent for the past hour, getting physically and psychologically composed for sleep. I am like an overtired child who doesn't want to go to bed, doesn't want to miss anything or stop. It could be looked at as like an addictive process as well. And then there is my observation that my boundaries and self care can fail more easily when I am too tired.

    Normally I don't have a computer or TV or anyone else inhabiting the same place, which is the best situation for resting my brain and caring for my physical needs. But now I am taking care of a group of pets for a long spell at someones house where there is a great computer, TV and junk food, so I'm indulging in and overdoing it with all those pleasures. I am the image of someone walking around in a crash--must look like a survivor from some catastrophe--unfocussed eyes staring blankly, unkempt--got the picture?

    Cecelia
  3. shrewsbury

    shrewsbury member

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    hi dan

    funny the ideas we get of people. I had imagined from your posts that I've read that you are quite functional and very gregarious and connected with people. The word isolated wouldn't have come to my mind.:)

    For me, there are a few times that I may push it and/or ignore the signals that I'm over-doing for the reasons you and Cecelia so honestly delineate, but for the most part I find that over-doing is part and parcel of the ever-fluctuating energy envelope.

    I try to do as much as I can staying within the envelop. But as the envelop changes continually for me hourly, not just daily or weekly, and as I often can't tell when I'm over-doing, I end up paying for it.

    I try to stay sensitive, and only do a bit more at a time, .......

    But I'd rather pay for it now and then than get too complacent at a lower-functioning level - especially for me right now when that extra bit of energy is fun things like an extra shower a week, pretending to be in the race with the dust-bunnies, trying to stave off deconditioning, one more in-voice or in-person contact with someone I care for...........

    So yes - there are times I can blame myself, but most of the time not and I blame the nature of this dratted disease.

    if:)
  4. Sing

    Sing Senior Member

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    Thanks for your responses

    It is good to hear your voices about this. It helps to hear how others are dealing with these competing wants and needs: to try to stay in balance vs. to connect with people, be more part of life, do a whole range of normal things.

    Just considering it subjectively, there is control, self discipline, giving things up; then also openness to life, action, participation; and then self forgiveness, letting go into peace and deep rest. These different kinds of actions do seem at odds with each other, but all of them are needed. It leads to an integration that is related in many ways and skillfully conducted.

    Just musing...

    Cecelia
  5. BEG

    BEG Senior Member

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    Energy or not (usually not), I'll only push for the activities that bring me joy, make me smile, fill my heart, and leave me feeling glad I'm alive. The to-do's in my life are put on a list and put on hold until and if I can get to them.

    We have a disease of energy. Spend your energy where it's most gratifiying. Be less hard on yourself, Dannybex. Pursue joy. Then rest. The activity that drained you will sustain you.
  6. jackie

    jackie Senior Member

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    Hi Brown-eyed Girl....I love your last sentence!

    I'm going to write that out and leave it nearby to REMIND me!

    I find that although posting (sometimes even reading!) here can be draining and trigger PEM..the benefits far outweigh the negatives!

    Especially wonderful for me are the posts that get me laughing..and the topics about things that I love so much and that used to be a part of my life!

    Creative things, movies, music, reading and art. Oh, and anything to do with kids and pets!

    My adult son and DIL (until about a year ago) regularily brought my two grandsons a few times a month to visit me.

    I always found the energy to have some kids "art project" set up ahead of time. The kids equated ME with ART!

    And, being a "former" artist, that thrilled me. I ALWAYS pushed too much and suffered the usual reaction we get. But I couldn't have cared less!

    The joy I was left with was one I couldn't get from ANYTHING else....I was able to form mental and emotional memories that actually DO SUSTAIN me as my days become more lonely.

    You've hit the nail on the head! Thanks! jackie:)
  7. dannybex

    dannybex Senior Member

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    thanks for all your replies...

    ...but I'm pushing myself too hard right now (should be eating dinner...in fact should've been done eating dinner an hour ago)...so will reply in more detail tomorrow.

    Deeeeeeeeep breath.

    And "relax".

    d.
  8. dannybex

    dannybex Senior Member

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    Omg...

    I just wrote this long post, replying to each of you individually...but it took me so long I guess in the meantime I was automatically logged off...and lost the post in the process. Aaaauugh.

    I'll see if I can 'find' it...but I'm sure it's lost so I'll try again tomorrow. But thanks to all...you all had so many good points, great posts of wise advice and kind words...hope to hear from others as well.

    zzzzzzzzzzz........klunk. :)

    d.
  9. dannybex

    dannybex Senior Member

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    Okay...will try this again...

    Thanks for all your replieshope to hear from others as well.

    Ironically, last night when I tried to post my 2nd reply, I ended up staying up until almost 2:30AM, and can't even remember specifically why or what I was doing! Worst in a long time, up way too lateand today am paying the price big time. Oy

    Cecilia: I am like an overtired child who doesn't want to go to bed, doesn't want to miss anything or stop.

    Very interesting analogy Cecilia. Perhaps thats part of itthat we are so sick of being sick, that whether it makes any sense or not, some of us instinctively feel this need to hurry up and figure it all out, get all the answers, so we can get back to our lives. Even though deep down we know it doesn't work that way...?

    When it comes to being online, it can definitely be addictive. Maybe its a way of distracting ourselves from our realities, which can be good to a certain extent, but harmful too, not only if we overdo it, but just for the fact that we need to face our challenges as welland at least temporarily accept them in order to learn from them, let go of expectations and make beneficial changes. (Sorry, too "Dr. Phil?")

    Island Finn: funny the ideas we get of people. I had imagined from your posts that I've read that you are quite functional and very gregarious and connected with people. The word isolated wouldn't have come to my mind.

    Lol. Well, I must be a better actor than I thought. I used to be an actorI broke my arm and they put me in a cast. They put me on stage...the next stage out of town! I knowGROAN. (Im here all week!)

    Seriously, maybe you got that impression because I try to project hope or some microscopic bit of positivity into most of my posts.

    Slightly off-topic, but Im sure you can all relate that we all face this frustrating catch-22: If we talk too often about our symptoms, our problems, no matter how small or severe, friends and family eventually (and sometimes instantly) disappear. But if we put on the happy face ☺ and crack jokes, have a few laughs, then most people will think Hey, hes not sickor I just saw him the other day, he seemed fine!

    I have friends who live a BLOCK away. They never call, never email, but when I run into them in the store every 2 months or so, Im greeted with this fake, overcaffeinated enthusiasm as if Im their best friend who just got back from 2 years with the Peace Corps. :eek: Deeep breath, and relax.

    So theres that fine line. We need to reach out for compassion and understanding, so we have to at times talk honestly about our situation, but understandably no one wants to be around Danny Downer 24/7so usually when I run into friends, Ive learned to just say Im hangin in there, and if they question that, as much as Id like to scream IM SEVERELY DISABLED!!!, I curb it in, and ask them how theyre doing.

    Levi: Personally, I find that self-forgiveness is important to let go of any regrets.

    Excellent advice Levi. And so succinctly put. Another thing I (obviously) need to work on

    Brown-eyed Girl: Energy or not (usually not), I'll only push for the activities that bring me joy, make me smile, fill my heart, and leave me feeling glad I'm alive. The to-do's in my life are put on a list and put on hold until and if I can get to them. We have a disease of energy. Spend your energy where it's most gratifiying. Be less hard on yourself, Dannybex. Pursue joy. Then rest. The activity that drained you will sustain you.

    More great advice, thank you. I am working on pursuing things that bring me joy, things that I do for myself, rather than taking care of or worrying about others needs first. We have to give ourselves permission (sorry, too "Oprah"?) to just say no (too "Nancy Reagan"?), and take care of ourselves.

    Youre so rightdoing things that you enjoy, even if youre pushing it too much, make a huge difference. Still, at least personally, I need to be more disciplined in that area tooas even those things can delay the things we need to do each day (the basics, like cooking, eating)and then we end up going to bed a 2:30AM!

    Jackie: From one former artist to anotherwere NOT former artists! ;) Were just different for now. As difficult and rare as it can seem, people have and do recover. I know two who were sick for over 16 years, one severely, and both are back at 90-100%. Remembering that helps keep me going, not to mention the stories of improvement here on Corts blog.

    Thanks again,

    Dan

    p.s. Martha Kilcoyne's story is an excellent example of "active" or "forced" resting to achieve recovery. Can't remember the name of her book right now, but highly recommend it...
  10. Cort

    Cort Phoenix Rising Founder

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    Defeat Chronic Fatigue Syndrome Now - I did an interview with her - I really like her; very down to earth.

    I honestly think its part of the disease. I am in the wired but tired subset. A wired overstimulated difficult to calm down and relax state is very much a part of this disease for me. It also makes it difficult to concentrate well. Its all a piece to me.
  11. annunziata

    annunziata Senior Member

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    It's an interesting question. It does seem funny to me that sometimes we are reprimanded for not trying hard enough, and other times, for pushing ourselves too hard.

    For me, anyway, I think I have bouts of nostalgia for the person I once was. I walked for blocks in New York City a couple of days ago. I knew it was really risky. But it was a beautiful late autumn day, and I enjoyed it -- until the inevitable happened. I think I wanted to feel like my old New York City girl self again. Of course, now I am a wreck, with nausea and a headache, muscle pain, exhaustion...

    I think one issue is the constantly changing parameters. My capacity varies quite a bit, really. Sometimes I cannot lift my head off the pillow, and at other times, I can briefly function -- well, decently. I am pretty good at adjusting to whatever my current capacity is, but sometimes, I do too much -- something I want to do, normally -- it's kind of like a jail break. An unsuccessful one, always -- I get caught and sent back to jail.

    Amy
  12. Sing

    Sing Senior Member

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    Quoting Amy:

    Sometimes I cannot lift my head off the pillow, and at other times, I can briefly function -- well, decently. I am pretty good at adjusting to whatever my current capacity is, but sometimes, I do too much -- something I want to do, normally -- it's kind of like a jail break. An unsuccessful one, always -- I get caught and sent back to jail.

    I feel like this too--AM like this. And it's the reason why I've known there was something centrally wrong for years, not amenable to vitamins, antibiotics, faith healers, etc. (I've lost some friends over the years who are "healers"--they blame me for not getting better, just like the Lyme doctor, etc.) I think of my condition as like "being tied to a post" or "on a short leash."

    So when the WPI discovered this link between ME/CFS and a retrovirus--I felt, Ah Ha, that fits! It had to be something like this, on this order of things, because I know every day that I have the same condition with all its limitations. It never goes away.

    Cecelia
  13. IntuneJune

    IntuneJune Senior Member

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    We have a busy holiday week, company/family coming in from out out state, we are so excited, young grandchildren, d-i-l and son. They arrive Monday. Busy week, we are hosting Thanksgiving, with more folks coming for dinner. Somewhere in there, it's my husband's birthday. Then our newest grandchild is being Christened the Sunday after Thanksgiving. I have so, so much to do.

    We were on a cruise last week, I did a lot of sleeping. I really could use downtime. But I am in a big fight with my insurance company.... who abruptly discontinued treatment I desparately need to keep me healthy. No time is a good time to have this treatment interrupted, but with flu season here and the added H1N1, double whammy.

    I went to Boston Tuesday to get a second opinion, the doctor agrees whole heartedly with the first doctor and is surprised the treatments were discontinued. So I have been frantically gathering as many medical records together from different sources, not in my regular doctor's record to support the fight the doctors need to engage in.........geezzzz.

    It has been so stressful.

    I am learning (going on 30 years with this syndrome--so I guess it is about time) to pace myself more.... but sometimes life happens. The joy of my life are my children and grandchildren. Three of my grandchildren, son and d-i-l live in Ohio. Visits to our home in New England are precious to me. My husband is a really big help with cooking for Thanksgiving. Everyone will pitch in.

    Last year, my treatments got stopped in September, there was a three month lapse. Now it has happened again, this time the insurance company wanting more documentation, the doctor supplying it and but then the insurance company stating he has not proven that I need treatment.

    The proof is when the treatments are stopped, I get sick. I missed last Christmas, we drove to Ohio only for me to be sick and zone out for Christmas. Now here I am in the same situation for Thanksgiving with the family coming here.

    So many here on the board are much less functional than I am right now, although I have been in the situation where I could not walk due to drop dead exhaustion, having no strength in the legs to hold me up type of exhaustion, brush my teeth, lay down..... brush hair, lay down......you know the routine.

    So knowing..... brings fear.......

    I have lost site why I started to post to this thread. I wanted to say thank you for starting this thread. I have been following it over time. In one way, it has given me permisison to let go of some behavior, well, better said, the thread produced an awareness of some behavior....... then I gave myself permisison to let go.....

    But other times, life happens.... we have no control.....

    Hummmm, am I confusing anyone besides myself. Let me bow out gracefully and say thank you again.

    June
  14. DSan

    DSan Guest

    Push Crash Push

    I think most of us are wired this way, meaning we go all-out to help, work, play or whatever. Its easy to think that "somehow it might be different this time" and push on, almost trying to "will" ourselves into a different mindset so that the inevitable crash doesn't happen or isn't so bad.

    Maybe I'm just speaking for myself, but Push-Crash is how I live with CFS. I generally do my best to ignore it and do whatever I can. Even when I flat on my back, I'm trying to read or I'm planning on doing something as soon as I get enough energy or clarity. Seems like a neverending cycle...

    DSan
  15. annunziata

    annunziata Senior Member

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    Hi Cecelia,

    I was just talking about this with my doctor the other day. We were talking about the retroviral finding (and I have tested positive before, in the derided de Freitas study) and that it was not surprising to either of us, not to her from her physician's perspective nor to me as a patient. In the first weeks I felt this illness digging in with its awful talons, and it has resisted every valiant effort I've made to rid myself of it. Like you, I have incurred the impatience and disgust of people who think I just ought to take more vitamin supplements, or adjust my attitude, and so forth. They have no clue about the battle you wage with this disease. Yah, 'centrally wrong' is a good way to put it.

    I think I also push myself out of sheer cussedness -- it's never a good idea, I always get walloped, and what am I trying to prove? None of the people who have sneered at me for being a lazy slacker are there watching the struggle, and much of the struggle is invisible, anyway.

    And I push myself because I must and/or selectively choose to. I am finishing a large painting for someone. I can't ever do something this size again -- it's a six footer, I've worked on it in short sessions for almost a year, and it damn near killed me. But it's nice to have something to show for yourself, no one can say all I do is lie in bed and watch television. And I have to get wood for my woodstove. That's going to be interesting! I dragged pine branches over that have to be sawed up for kindling. I really, really wish I could get help with this. Even if I have wood delivered, stacking it is going to be a nasty job for me. Somehow, I'll do it. I hope :p.

    Cheers,

    Amy
  16. IntuneJune

    IntuneJune Senior Member

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    Pushing............

    I pushed myself.............so I would have memories.

    June
  17. Marylib

    Marylib Senior Member

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    For June

    I understand June... oxoxo
  18. Sing

    Sing Senior Member

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    Dear Amy,

    You gave me a big smile of recognition with your last post--thanks! I appreciated reading the specifics too, that 6 ft painting you've been working on and the pile of wood to get chopped and brought in! The invisible struggle! Well it isn't invisible here to us.

    I used to live in a cabin with a woodstove. It was 100 yds walk in from the road and the first year I threw my back out twice trying to manage. I happened to meet a neighbor, a retired trucker, who told me all about his herniated discs and how fed up he was with humanity. "People!" he said, "I can't get far enough away from them!"

    But when I told him I was having back trouble too, he immediately offered to come over with his snowblower after every snow, and to bring in the wood too, if I needed. I was so bowled over by his generosity I think my back started healing right then!

    I hope you run across a nice neighbor or friend too, who might like to help you with that wood.

    Cecelia

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