Tuning In to Your Ultradian Rhythms

April 20, 2013

by Jody Smithpixabay-clock-and-face

The struggle with energy (or lack of it) is an integral part of life with ME/CFS. Whatever other symptoms each of us deals with, the ongoing energy black hole and knowing when and how to use what little oomph we might have safely, is a conundrum we all grapple with, often without success.
 
During the times when we just don’t have anything to spare beyond breathing and the most basic thought processes, the quandary of how to use energy is irrelevant and out of reach. The question sticks its tongue out at us in derision.
 
For some of us though, there are times when we have a little extra energy. The temptation is to use it up getting some of the things done that have been amassing like a dusty pile of old newspapers.
 
We take the dare and spend an hour on the things that have been frustratingly out of reach. We enjoy the wind in our hair, trying to live a slightly more normal life … and we crash. That hour can ultimately cost us the next two days, or weeks or months as we are flattened on our beds once more.
 
How, we wonder, with the few synapses in our brain still functioning, will we ever overcome this roadblock to real life? For several years I had no answers to this question.
 
For this reason, when I encountered the concept of ultradian rhythm it really caught my attention. Ultradian rhythm is not a term that is wellknown. And those who have heard of it may only be familiar with ultradian rhythm as it relates to REM sleep.
 
The U.S. National Library of Medicine, National Institutes of Health (PubMed) has this to say about ultradian rhythms. “The hypothesis of the Basic Rest Activity Cycle (BRAC), that underlies approximately 90-min fluctuations in states of consciousness, has gained strong documentation during sleep in cyclical occurrence of its REM and NON-REM stages, however, there is no convicting evidence of this rhythm in waking.”
 
With all due respect to PubMed, I decided that if I could apply this to my waking hours as well, I wasn’t going to let their lack of validation for it stand in my way.
 
An ultradian rhythm is any biological process that occurs in less than 24 hours. Every day, we cycle through ebbing and flowing routines that are regularly scheduled by the body.
 
It makes good sense for the body to do this. Up and down phases help to regulate everything from blood flow to brain wave changes, to hormonal secretions. These rhythms help the body to function properly, lessening the occurrence of autonomic dysfunction. Put simply, after 90 minutes or so of being active, our bodies prefer to rest for the next 20 to 30 minutes.
 
When I read about this natural predilection of the body to rest at regular intervals through the day, I paid special attention to it. This was at a time many years ago when I was either in bed, on my way to bed, or feeling like I was going to fall down and wishing I was in bed.
 
I didn’t need to be convinced that I had a powerful need to rest. I was intrigued by the possibility that I might be able to work with my ultradian rhythms and perhaps experience some healing — or at least not feel quite so crappy all the time.
 
I had up until this time done the usual ME/CFS thing. On the rare occasions when I felt less than decrepit, I would try to make the most of it. Get some laundry done. Go for a walk. Do something with my husband or with the kids.
 
That never worked out very well, I don’t have to tell you. I’d get drilled into the floor afterward in a tremendous crash, and would end up far worse off than I’d been before that one magical afternoon of activity.
 
The ultradian rhythm suggested that there might be a way to ease into things. And for me, it has worked out that way.
 
I need to say loud and clear, that this is not going to be the case for everyone, in every stage of ME/CFS fragility. And it may work for you during one season but not in another. We all experience a lot of variables, a lot of x factors that determine when we can do … well, anything … and when we cannot.
 
There have been times when I was just too darned sick to even consider trying to be up for even a few minutes, let alone 90 of them. Other times I was well enough to be doing something for 10 or 20 minutes, then the warning signs began to signal that it was time to get horizontal.
 
So keep all this in mind and don’t get yourself into a ditch over it. As ever, you must judge for yourself how you’re doing. Listen to your body with the utmost respect. Ignore everyone and everything else that tries to tell you to get up and moving when you know it’s just a bad idea.
 
To me the main thing was that it might be possible to do a bit through the day without having to land on my face. The rest periods were key. I hoped.
 
And for me they have been. As with most things ME/CFS improvement does not come in a straight line, often after three steps forward, you go two steps back. For that matter it’s not uncommon to go two steps forward and three, four, or five steps back. Once again I’m not telling you something you don’t already know. I just want you to be assured, that I know it too.
 
So on the days when I felt able to get things done, even if I still felt fine after an hour or so, I would make myself stop. I would lay down with a book, or curl up and go to sleep. I would make sure to do this for at least 20 minutes whether I felt like I needed it or not. If I was feeling worn out, I would lay low till I felt better, and if that took more than half an hour that was fine too. Sometimes I’d sleep for hours afterward. Also okay.
 
I’ve recovered (or am in remission, or whatever term you are more comfortable with) quite a bit since then. I’m able to work full-time online. There’s not a lot more besides that going on in my life but compared to six years ago for instance, this is no small deal. And I am able to take my dog for a walk every day, cook meals, do laundry, go to the store or the library without symptoms.
 
I wouldn’t try to say that tuning in to my ultradian rhythms has made the big difference. But I am convinced for myself that it has made some valuable difference in my ability to regain some life again. And I still follow it loosely.
 
I never try to be on the go all day long. I make sure to take breaks. And when I am overwhelmed, and the rushing starts in my ears and the numbness appears in my face and I feel like I am vibrating and can’t think … as soon as possible I find some place to set aside and rest. And 20 minutes will usually make a big difference. Enough to be able to carry on. At least for another 90 minutes.

Further reading 

Keeping Time with the Ultradian Cycle
http://www.ncubator.ca/Time_Ultradian.html
 
Ultradian Rhythm: Finessing the Sleep Cycle
http://www.empowher.com/sleep-disorders/content/ultradian-rhythm-finessing-sleep-cycle
 
“The protective mechanisms of the basic rest-activity cycle as an indirect manifestation of this rhythm in waking: preliminary report.
http://www.ncbi.nlm.nih.gov/pubmed/12751429
 
Basic Rest and Activity Cycles
http://www.polyphasicsociety.com/polyphasic-sleep/science/brac
 
Circadian/Ultradian Rhythms
http://www.polyphasicsociety.com/polyphasic-sleep/science/rhythms

 

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39 comments

{ 39 comments… read them below or add one }

Tristen April 20, 2013 at 9:13 pm

Thanks for sharing and for the links Jody. I've found pre-emptive resting to be quite beneficial for increasing my overall up time too. I haven't heard of the Ultradian Cycle, but it sounds interesting……need to check it out.

Problem is, even after 20 years learning this lesson, I'm terrible at making myself stop when feeling good, better. Another problem I have with this is that the stress boundary is not constant. It's often unpredictable. Also for me, crossing the anaerobic threshold is only one of many ways to cause a crash; watching my pulse rate just isn't much of a tool. I've found the best tool to be listening to that internal voice telling me to stop, which is always well before I intellectually believe it necessary.

heapsreal April 21, 2013 at 2:47 am

There are so many cycles within cycles within the body that i think are out of whack and not in sync or too low or too high. Circadian rhthym with melatonin, cortisol rhthym, other hormones are rhythmic too and also neurotransmitters are involved as well as counter balancing each other like dhea and cortisol or insulin and glucagon etc. I think this is why many experts have mentioned cfs/me is not only immunological/infectious but also neurological as the hypothalamus etc control many of these functions and help co-ordinate them. I also think this is the reason why there will be no one hit wonder but more of a number of treatments are going to be needed to treat this dam thing.

ukxmrv April 21, 2013 at 5:55 am

I'd love to be able to function for 90 minutes.

Jody April 21, 2013 at 8:36 am


Tristen

Thanks for sharing and for the links Jody. I've found pre-emptive resting to be quite beneficial for increasing my overall up time too. I haven't heard of the Ultradian Cycle, but it sounds interesting……need to check it out.

Problem is, even after 20 years learning this lesson, I'm terrible at making myself stop when feeling good, better. Another problem I have with this is that the stress boundary is not constant. It's often unpredictable. Also for me, crossing the anaerobic threshold is only one of many ways to cause a crash; watching my pulse rate just isn't much of a tool. I've found the best tool to be listening to that internal voice telling me to stop, which is always well before I intellectually believe it necessary.

Hi Tristen

I know what you mean about the other variables that keep life messed up. It's funny how our brain often will deny what our body tells it, that it's time to regenerate, that the energy is used up … If you are able to tune in to, and obey, your body's inner warning system, that is the best.

Jody April 21, 2013 at 8:37 am


heapsreal

There are so many cycles within cycles within the body that i think are out of whack and not in sync or too low or too high. Circadian rhthym with melatonin, cortisol rhthym, other hormones are rhythmic too and also neurotransmitters are involved as well as counter balancing each other like dhea and cortisol or insulin and glucagon etc. I think this is why many experts have mentioned cfs/me is not only immunological/infectious but also neurological as the hypothalamus etc control many of these functions and help co-ordinate them. I also think this is the reason why there will be no one hit wonder but more of a number of treatments are going to be needed to treat this dam thing.

Hi heapsreal,

Agreed. I don't think there is any one hit wonder either. The more pieces of the ME/CFS puzzle we can put properly in place, the better off we'll be.

Jody April 21, 2013 at 8:43 am


ukxmrv

I'd love to be able to function for 90 minutes.

Hi ukxmrv,

I sympathize. It's been awhile for me but I remember what that is like. I'd take the basic premise of the ultradian rhythm and cut it up to suit me.:) After I'd been in a crash for some time, I would spend maybe a minute or two doing something. Ready to just toss it if I had adverse reactions. Any increase would be no more than a minute or so at a time, and increases would never happen one day after another.

But when I was really sick, such things were the furthest thing from my (non)mind. Then I did the only thing I could do. Rest. Sleep. Breathe.

There's an ME/CFS saying I heard somewhere — Why stand when you can sit? Why sit when you can lie down? That was my motto for many years. It had to be. So why feel embarrassed about it — embrace the truth and do what works, right?

Don't ever try anything just because somebody else (eg. me) suggests it. Even good things can be poison in the wrong setting. Leave it all for later.

ukxmrv April 21, 2013 at 6:32 pm

Thanks for the kind reply Jody. It sounds like you are using a resting method comparable to the old 15 minutes activity then 45 minutes rest regime but with a much longer activity and much shorter resting period.
Even at my most active (well for the last 20 years anyway) I've never been able to have an activity period that is longer than the resting period.
Glad you found something that works for you.

Jody April 21, 2013 at 7:28 pm


ukxmrv

Thanks for the kind reply Jody. It sounds like you are using a resting method comparable to the old 15 minutes activity then 45 minutes rest regime but with a much longer activity and much shorter resting period.
Even at my most active (well for the last 20 years anyway) I've never been able to have an activity period that is longer than the resting period.
Glad you found something that works for you.

Thanks ukxmrv,

I hope the day comes that it will happen for you as well.

Sing April 21, 2013 at 9:37 pm

Thank you, Jody, for a very helpful article and reminder. I want to try to keep my head above water enough to be disciplined like this, following the inner cues (which I have but usually ignore). Now in my "declining years" with ME, I find I am becoming more compulsive. My guess is that this is the brain's back up system for motivation. It comes from my desire to be efficient, productive and competent. I want to be normal and get things done! So I bypass those signals telling me to stop an activity, to rest, slow down or do something else. I go with the warrior ethic, the strong, persevering ethic I was schooled in, and as we know, end up hurting myself. Then, seriously out of balance, I make some other messed up judgment or decision. Until I rest enough, this is what happens. I have also had accidents and injuries as a result of pushing. You'd think I could learn. Well, this community talk and discussion really helps. Because to bring all this into a social context for ourselves makes our issue and need much more solid and real. Thank you again!

Sing April 22, 2013 at 6:18 am

Along with this rhythm of rest and activity, there is another way to combine the two which I actually do, and which helps me get by. I let my brain slow down and be dreamlike with whatever I can during the day, coming alert only as necessary. I have learned to do this floating drift. It was frightening to be like this when I first got ME, to be half asleep during the day, but gradually I adapted to it. Maybe it is analogous to becoming a fish swimming in the sea instead of some bright, alert land animal! People have told me I am so calm and peaceful. That is not how I would describe myself, but they are seeing the quiet, slow brain pace I operate in much of the time. What wears me out fast is when I have to keep up with normal to fast, or intense people and conversation. I can only do normal speeds for short periods.

Jody April 22, 2013 at 7:28 am

Sing,

I know, it's not easy to go against everything we learned before we got sick. It's hard to slow down when everything else is going full tilt in the world. I think too — at least it was this way for me — I had become so let down and disgusted with my body for its failure to function that I did not respect what it told me and did not want to listen to it. As if it were a lazy irresponsible child giving me excuses for why it should not or could not do what they were told.

I understand the warrior thing, I have had to unlearn, or perhaps re-structure that as well. The wise soldier knows when it cannot win. The soldier who is also a survivor knows when to cut losses and retreat — in order to be able to fight another day.

Disciplined resting is something that I have had to learn and relearn … and relearn … :) One of the reasons it's important to talk about, I think, is that it can be hard to do, and to keep on doing. So even though we all know basically the same thing — that we need more rest than anyone else and if we don't have it we get sicker — it's important to keep talking about it, so we can start, or keep on, doing it.

In your second post you describe the half life that is so much a part of this illness. My son at almost 23 has been there for a number of years. I was there, but have been able to emerge.

I still do most things slower than the average person, slower than I did before illness. A neighbour told me once that when she and her husband would go for their fast-paced walks, they would occasionally see me also out for a walk. (This was during a time when I was exercising 45 min. a day and taking two 45 min. walks daily with no problem, a few years ago. I am not up to that at present.)

She described my pace as "leisurely". She hadn't known that I was sick. Now that I had told her she realized it was not so much leisure as trying to conserve energy.

One of my daughters has always been a high energy person and when she was a teenager, and I was in my worst health, being with her was exhausting. I would have to bow out because I couldn't even think fast enough to keep up with stuff she would tell me about from her day … let alone do it.

Tristen April 22, 2013 at 7:40 am

One of my docs called it "re-writing the script"

Jody April 22, 2013 at 9:17 am

Sounds like a smart doc.

Sing April 22, 2013 at 12:14 pm

Awesome reply, Jody! I am going to copy your general thoughts from the first half and post them where they are visible. Especially your continuing on with the warrior analogy–going from a warrior to a wise soldier. I also definitely relate to the feeling of being disgusted with my body for not functioning well. It is challenging to learn that we can't replace what is real with wishful thinking, but need to accept what is real and "work with that". I won't even say, "Do our best", because that goes into the perfectionism which leads right straight back to discouragement.

It must have been so tough having teenagers and a family when you were struggling so. You are a hero in my mind.

Sing

Jody April 22, 2013 at 2:53 pm


Sing

Awesome reply, Jody! I am going to copy your general thoughts from the first half and post them where they are visible. Especially your continuing on with the warrior analogy–going from a warrior to a wise soldier. I also definitely relate to the feeling of being disgusted with my body for not functioning well. It is challenging to learn that we can't replace what is real with wishful thinking, but need to accept what is real and "work with that". I won't even say, "Do our best", because that goes into the perfectionism which leads right straight back to discouragement.

It must have been so tough having teenagers and a family when you were struggling so. You are a hero in my mind.

Sing

Well … thanks. :) I'm glad it struck a chord for you. I'm touched.

It was tough having kids around in some ways. In other ways they were like a rope to hang onto, preventing me from slipping further down. They were company without having to go out (which i could not have done) and their energy and youthful optimism rubbed off on me somewhat as well. Of course they also were exhausting.:) But that's kids for ya.

Marlène April 22, 2013 at 3:08 pm

Congrats, you do have a sense for comedy. Your article made me laugh out loud although we all know there's nothing funny about being a prisoner of our own body. I don't know how long I can still accept the fact my body is not getting better. I'm very lucky however. Years ago I was even unable to turn myself around in my bed or walk to the bathroom next door. I can drive a car now and type this message. Things have improved. And still there is the invisible wall, the damage inside that sets our limits. I listen to my body, don't push till it crashes, sleep when I feel like. I put the clock not to ruin my nights. But I don't know if I can live this life for the rest of my life.

Tristen April 22, 2013 at 8:50 pm

Jody, I know what you mean with the kids…..they gave me love, laughter, and a sense of purpose. My girls saved my life through those most difficult times. We can endure any how, as long as we have a why.

GracieJ April 23, 2013 at 12:05 am

Your articles are always spot-on, Jody! Thanks for another one. It just really puts life into perspective to read of others' struggles and their moments of success within the struggle.

Back years ago when I was a single mom with two kids at home and a mortgage to stay up with, pacing like this is the only thing that kept me going with working. I would work for an hour or two, then rest, work for an hour or two, then rest. If this is a "real" rhythm, which I'm sure it is, it sure explains a lot. Sure wish I'd kept my business open, but life happens.

Ditto about kids… those years, having kids to get up to and come home to at the end of my work day kept me going. I had to keep up with them. It just goes that way. My motto with teens is listen to them, and make them laugh, every day — and when it's tough for them, it will be you they talk to. This paid off.

My one regret for that time period is that I didn't really ever tell them I was ill. No one else believed it, so I kept my activity level at a level I could handle without really showing how badly I was hitting a wall occasionally.

Now I'm an empty nester. Life itself seems empty sometimes. I have to agree with the above: We can endure any how and any what, as well, as long as we have a why.

Little Bluestem April 23, 2013 at 2:35 am


Jody

I still do most things slower than the average person, slower than I did before illness.

I find this as important as the resting. When I first tried pacing, I would go as fast as I could during my active period. I have found that if I move at a moderate pace when I am active, I can do more before I have to stop and rest. Heeding when I need to stop and rest can still be a problem.

Wayne April 23, 2013 at 1:09 pm

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

Tristen April 23, 2013 at 5:28 pm


Jody

Sounds like a smart doc.

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.

Jody April 23, 2013 at 6:38 pm


Marlène

Congrats, you do have a sense for comedy. Your article made me laugh out loud although we all know there's nothing funny about being a prisoner of our own body. I don't know how long I can still accept the fact my body is not getting better. I'm very lucky however. Years ago I was even unable to turn myself around in my bed or walk to the bathroom next door. I can drive a car now and type this message. Things have improved. And still there is the invisible wall, the damage inside that sets our limits. I listen to my body, don't push till it crashes, sleep when I feel like. I put the clock not to ruin my nights. But I don't know if I can live this life for the rest of my life.

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.

Jody April 23, 2013 at 6:40 pm


Tristen

Jody, I know what you mean with the kids…..they gave me love, laughter, and a sense of purpose. My girls saved my life through those most difficult times. We can endure any how, as long as we have a why.

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.

Jody April 23, 2013 at 6:43 pm


GracieJ

Your articles are always spot-on, Jody! Thanks for another one. It just really puts life into perspective to read of others' struggles and their moments of success within the struggle.

Back years ago when I was a single mom with two kids at home and a mortgage to stay up with, pacing like this is the only thing that kept me going with working. I would work for an hour or two, then rest, work for an hour or two, then rest. If this is a "real" rhythm, which I'm sure it is, it sure explains a lot. Sure wish I'd kept my business open, but life happens.

Ditto about kids… those years, having kids to get up to and come home to at the end of my work day kept me going. I had to keep up with them. It just goes that way. My motto with teens is listen to them, and make them laugh, every day — and when it's tough for them, it will be you they talk to. This paid off.

My one regret for that time period is that I didn't really ever tell them I was ill. No one else believed it, so I kept my activity level at a level I could handle without really showing how badly I was hitting a wall occasionally.

Now I'm an empty nester. Life itself seems empty sometimes. I have to agree with the above: We can endure any how and any what, as well, as long as we have a why.

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.

Jody April 23, 2013 at 6:45 pm


Little Bluestem

I find this as important as the resting. When I first tried pacing, I would go as fast as I could during my active period. I have found that if I move at a moderate pace when I am active, I can do more before I have to stop and rest. Heeding when I need to stop and rest can still be a problem.

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. :)

Jody April 23, 2013 at 6:48 pm


Wayne

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

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.:)

Jody April 23, 2013 at 6:50 pm


Tristen

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.

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 April 23, 2013 at 10:26 pm


Jody

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.

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

Jody April 24, 2013 at 6:53 am


Tristen

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

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.

Diana S. April 26, 2013 at 3:04 pm

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.

Jody April 26, 2013 at 3:22 pm


Diana S.

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.

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 April 27, 2013 at 8:55 am

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.

Calathea April 27, 2013 at 9:33 am

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?

Jody April 28, 2013 at 1:18 pm


Wayne

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.

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.

Jody April 28, 2013 at 1:38 pm


Calathea

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?

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.

Lotus97 April 30, 2013 at 3:42 pm

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.

Jody April 30, 2013 at 4:55 pm


Lotus97

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.

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.

Lotus97 April 30, 2013 at 4:58 pm


Jody

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.

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.

Jody April 30, 2013 at 5:03 pm


Lotus97

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.

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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