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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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Tuning In to Your Ultradian Rhythms

Discussion in 'Phoenix Rising Articles' started by Mark, Apr 20, 2013.

  1. Wayne

    Wayne Senior Member

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    Hi Jody, Hi All,

    Jody, thanks for another great article. It really resonates with me, as tuning into various rhythms has long been a big part of my own coping strategies. I've even taken this a few steps further than what you've described. It includes trying to find various cycles that work for me in regards to other activities besides what you mentioned.

    For instance, I've discovered that very regimented morning routines help me enormously. I do the same energetic and polarity exercises to start my day. I stay sitting up in bed almost all morning as I drink the same tea and the same amount of tea. I also take various supplements at incremental times as my morning progresses. --- Too many supplements at one time are too much for my system to handle, even though I can handle them individually or in small groupings. By knowing what to expect from a VERY regimented routine, I find I'm able to more easily discern what disrupts my system, whether a food, a supplement, a certain activity, certain thoughts on various subjects, etc.

    I almost always make my first meal of the day the same food at the same time, so my body knows what to expect, and is not overwhelmed by an "exertion" it did not expect. This all generally helps me build up a certain "resiliency" in my first few hours of the day, so that by around early afternoon, I have a greater amount of flexibility (relatively). But realize I only have a window of opportunity for an hour or so, by which time I need to lay down, and prepare my body for a nap, which usually takes 15-30 minutes of preparation. Yes, even naps are something I have to "prepare" for.

    I do lots of other stuff, like doing the same activities just before turning the lights out at night (at usually the exact same time). I find willing to "cooperate" with the regimentations by body likes has given me much greater functionality than I would otherwise have. Most of these disciplines have not been particularly easy to incorporate, but I've persevered, even when it took lots of patience. If patience is a spiritual value, I think I may be in the running for sainthood. :D

    Warm Regards, Wayne
     
    Little Bluestem and Tristen like this.
  2. Tristen

    Tristen Senior Member

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    Yea she was a gem. Left her practice here and is now teaching at Uni. We now have another great me/cfs LLMD locally. Saw her yesterday. Very intuitive and compassionate.
     
  3. Jody

    Jody Senior Member

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    Hi Marlène,

    I know the feeling of not knowing if I can live this way. I have found though, not to my pleasure, that I can live with the unbearable alot longer than I would have ever thought. We just keep on doing what we have to do, and live with the frustration.

    It's good to know your limitations, and to live within them, making our little occasional increases verrry small so our bodies don't realize we're doing it, and so our bodies don't stop us. It's good to recognize signs that warn you of impending crashes, and avoid them.

    The smallness of many improvements are so frustrating but reminding myself and making the most of each small improvement I find makes this life more tolerable. Reminding myself that I am able to do more than I could before, no matter how small the improvement, helps to keep hope alive.

    I have lived with ME/CFS with hope, and also without it ... and whether having hope is realistic or not, I find that I must have hope to live with any kind of piece of mind.
     
    Tristen and Wayne like this.
  4. Jody

    Jody Senior Member

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    Tristen,

    That is so true. Life is easier and simpler now that four of our five kids are on their own. But the satisfaction and fulfillment that I found when my kids were younger and here at home far outreached what I experience now without them. Even though life is easier.
     
    Tristen likes this.
  5. Jody

    Jody Senior Member

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    GracieJ,

    When my kids were home, even though I was sick, I still had a sense of community. Even though it was accompanied with the enormous stress of trying to take care of a household (even with my husband's help in so many ways) I felt less alone. Even when there were times when I longed to be alone in a quiet house :) it helped with the sense of isolation.

    My kids were my world. Now my world includes a way to make a living working from home, and that is good ... but the important people in my world have left home, and I feel the lack.
     
  6. Jody

    Jody Senior Member

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    Little Bluestem,

    Slow and steady wins the race ... or at least keeps us from being totally sidelined ... well, at least sometimes it does.:)

    I find that it's a work in progress, this being tuned in to my body's needs and requirements. I get better at it over time. I think. :)
     
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  7. Jody

    Jody Senior Member

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    Hi Wayne,

    It sounds like you've worked out some useful and successful routines. I'm so glad they're working for you. It's an encouragement to those of us who are struggling with the concept, good to hear how it is working in someone's life.

    I had to laugh when you mentioned patience. You would think I would have learned how to be patient after everything ... but I am just as impatient and have just as much trouble with waiting as I ever did.:)
     
    Wayne likes this.
  8. Jody

    Jody Senior Member

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    I'm so glad to hear you have a good doctor. So many of us don't, you are very fortunate. :) I never had any luck with any conventional doctors but my naturopath has done me a lot of good in the last 6 yrs.
     
    Tristen likes this.
  9. Tristen

    Tristen Senior Member

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    Those good docs didn't come overnight and not without the high price of disease progression over something like 12 years of ignorance and misinformation. I had been through too many bad ones to count, before finally getting the keepers I now have. Believe me, I'm grateful. So glad you finally snagged a good one too.

    Best,

    T
     
  10. Jody

    Jody Senior Member

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    I know what you mean about time wasted before finding a good one. I'd been living with ME/CFS for 15 years before I found mine. They are like gold.
     
  11. Diana S.

    Diana S.

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    Hi everyone.

    It's so good to hear people talking about getting better. I am currently in the worst period I've ever had with this illness. In 2009, I was so fatigued I thought I had a reoccurence of cancer. That turned out not to be the case and in Jan. 2010, I had to quit work although I was only working 12/hrs week.

    In 2012, I tried working the same number of hours and made it 6 months having a major crash in October. I have been mostly housebound since then. A bout of major depression didn't help either. For a while, I thought this was all life would be forever--housebound. Then I started reading other people's stories and found out this low wouldn't last. So everyday I wake up and hope this is the day I will have more energy. I have hope again. I thank you all for your comments for giving me hope.
     
  12. Jody

    Jody Senior Member

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    Hi Diana

    I sympathize with what you have been going through. I remember times like that, extended times that seemed like the end of living. During those times I couldn't begin to hope for things to get better. And one of the additional problems with times like these is that there is no knowing when or if things will get better.

    But it is absolutely true that despite the extremity of major crashes, despite the fear that this is it for good ... sometimes things do get better ... and though improvement usually starts with tiny changes, it can also continue to bigger changes.

    I wish there were some guarantees but we all know that's not how it is. But I can tell you that there was more than one period of time -- some of them lasting several years at a stretch -- when I despaired of being able to do more than spend 3/4 of my time in bed, unable to take a phone call, unable to go for a walk, unable to have a conversation more than 5 minutes long ... unable to hold a pen and unable to put together any coherent words to write if I did ... joint and muscle pain that had me pinned to a chair and unable to sleep laying down ... driven from my living room by a ticking clock which my husband quickly dismantled ...

    You know this kind of list. You know the kinds of crippling I'm talking about.

    I mostly had no hope during those times. Eventually I realized that whether there was good reason to hope or not, that daring to hope made living this way easier to bear ... hoping for something better.

    There have been those steps forward followed by long descending crashes over the cliff, and the slow climb back up, more times than I care to count. Times of having to learn to be still. Times of having to be satisfied with breathing, walking about my house and being able to sit a few minutes with the family.

    I have been fortunate. After going through those straitened times, I can now work a 40+ hour work week online. I am able to write. I am able to walk my dog and do light exercise. I can visit with my family. (I have no friends around me anymore, except online). I can go into a store in my town and be normal about it. There are a million things I can't do, and maybe some of them I will never be able to do. And there is no guarantee that I won't wake up tomorrow like a vegetable again. But I guess nobody really has that guarantee whether they know it or not.

    I'm glad this has helped you to hope again. I've lived with it and I've lived without it. And life is definitely more worth living even in bed and sick, with hope.
     
    Wayne likes this.
  13. Wayne

    Wayne Senior Member

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    Thanks Jody, great post. ;)

    You may have written about it in the past, but is there anything specifically that helped you improve to where you're at today? --- Thanks.
     
  14. Calathea

    Calathea Darkness therapy

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    Jody, I'm glad to hear you've found something that works for you. So am I right in thinking that you do things at set intervals, e.g. starting activity at 12pm, 1.30pm, 3pm and so forth? Have you found particular times of day when your energy is higher or lower?
     
  15. Jody

    Jody Senior Member

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    Wayne,

    Lots of rest. For years, that's all I did. Then, a low carb diet handled my metabolic syndrome and food sensitivities, blood sugar problems. Vitamin B12, vitamin D, omega 3 oil are the 3 main supplements I've taken the last five years that make a noticeable difference. I get acupuncture once a month. Chiropractic when I have problems of pain and swelling in joints, that used to incapacitate me for months at a time.

    Sounds so simple, I know. But if I were to stop these things, old symptoms would flood back in.
     
    Wayne likes this.
  16. Jody

    Jody Senior Member

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    Hi Calathea

    I don't have things set up that regularly. Mostly I just try not to spend more than 2 hrs at anything without resting. And I will start to feel tired or foggy or shaky if I don't stop to rest so that helps to remind me when to stop.

    That being said there are some routines built into my day. I get up around 8:30 most mornings. Don't need an alarm. I put on my housecoat, go in the living room and turn on my computer. Then I check out facebook and a couple other personal things. Then I am at work.:)

    I spend about 2 hrs working online -- about 9 - 11, take a break, get away from my computer. Might read for awhile, do some stuff around the house. When the weather gets a bit better, I'll probably take our dog for a 10 min. walk in the neighbourhood.

    Back to my computer around 1 pm, for about an hour to 2 hrs depending on what all I need to get done. Sometimes my son Jesse and I will chat for a bit, that is about the time he is starting to feel human during the day (Jesse has cfs too).

    I might put dishes in hot soapy water, to be washed and put in the rack a litte at a time through the afternoon. Throw in a load of wash, put away a few clothes. These things are usually done a little here and a little there through the day.

    I'll walk the dog around 3 or 4 o'clock for about 10 - 20 minutes. I try to take her out for a couple of short walks because I am not presently up to doing a long one ... maybe by mid-summer we'll have slowly worked our way up to that.

    When I come back, it's time to work for maybe another hour, maybe 4 - 5 pm. Then I'll start working on dinner. Take maybe half an hour or so, generally something like cooking some chicken breasts or steak on the stove top and cooking a veggie or making a salad.

    After dinner, I'll sit and watch tv with my husband, sometimes Jesse will too. I usually do some work in the evenings, maybe write an article, for instance. An hour, or hour and a half is average for an evening.

    On weekends, I get up whenever I get up -- no schedule or alarm clock. I usually get up not too long past my weekday rising time. Once in awhile I'll sleep till 10 a.m. but that's unusual. Nice though.:)

    I make a point of not working online on Saturdays for the most part. I'll read, (and fall asleep over a book:)) do some work around the house. Saturdays are usually very low key. Sunday evenings I'll usually spend maybe an hour doing some work online, but otherwise, I just hang out with husband Al and maybe son Jesse.

    Last year, things were more hectic. I was working two hours every night of the week on top of my weekday schedule, and I'd spend 2 - 3 hrs on Saturdays and on Sundays. It was a wearing schedule but I could do it and I was happy to be making the extra money. :) I was surprised and relieved to find that I could keep up that kind of pace for as long as I did.

    I'd still be doing it now if I could. Some downsizing at work has cut back some hours so it wasn't my decision. Mind you I think it was a good thing for me to take an enforced break, at least for awhile. But I do expect at some point to find more work and be back to a 40 - 50 hour work week.

    I'd say, see what works best for you. There may be breaks that seem to work naturally into your day, and if so stay with it. If not, figure out when you need to be making time for rest, and stick to your schedule. You may need longer rest times, you may need more frequent rest times. The best way sometimes is to take a concept and tailor it to fit you and your needs.
     
  17. Lotus97

    Lotus97 Senior Member

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    I've found that getting a lot of sleep and limiting activities/sources of stress have helped my condition more than supplements or dietary changes.
     
  18. Jody

    Jody Senior Member

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    Lotus,

    I'm glad that is working for you. It has been the same for my son Jesse. He could not take supplements for a long time, and sleep, rest and limited stress and activity has gradually made some difference for him. For me, that method made some difference, but I got stalled after a few years. Adding the supplements helped me to get to a new level.

    All of us are different as far as what works for us.
     
  19. Lotus97

    Lotus97 Senior Member

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    I've considered stopping a lot of my supplements, but I'm afraid I'll have a crash if I do. There's so much research as well as positive customer reviews saying that supplements are good thing to take so maybe they're helping a little. It's hard to know for sure.
     
  20. Jody

    Jody Senior Member

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    Lotus,

    It can be very hard to know for sure. After taking omega 3, vitamin D and B12 for some months I was not aware of improvements ... until I ran out and didn't replace them right away. Then I noticed the increase in muscle pain and realized that omega 3 had been making a difference after all. Within a few days of starting again, the muscle pain began to recede again. Same thing with vit. D -- I started experiencing the old dizziness, feeling like gravity had increased and like my legs weighed a thousand pounds ... that I couldn't stand up for more than a few minutes before feeling like I was going to fall down. Again, when I started vit D once more, it was just a matter of days before I regained the lost ground.

    Trial and error sometimes is the only way.
     

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