Sushi
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If by degenerative you mean progressive, it does seem to be for many of us--certainly has been for me until I got adequate treatment.
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Creating a Surplus
- Thread starter jeff_w
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Sushi
jeff_w
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Interesting question. I think ME can be progressive and often is. The good news is, the disease can also be reversible, so it's not degenerative. Like in my case, due to aggressive expert treatment, I've gone from bedridden to much more functional, and I know others who have as well.
Whether or not someone can reverse their ME/CFS depends upon a lot of factors, especially the treatment they receive and how they respond to it. There seems to be some luck involved.
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Degenerative diseases refer to the function of organs or joints that slowly deteriorates over time, also characterized with infectious diseases.
Progressive diseases are diseases that make the body worse as the disease gets worse.
I would say progressive is the proper term here. I think some of us can save ourselves from becoming worse by pacing.
Progressive diseases are diseases that make the body worse as the disease gets worse.
I would say progressive is the proper term here. I think some of us can save ourselves from becoming worse by pacing.
http://forums.phoenixrising.me/index.php?threads/how-often-is-me-progressive.33104/
I found this thread so there is no need to rehash it.
I found this thread so there is no need to rehash it.
Well I can't answer that, but PEM is distinctive to our illness therefore pacing is necessary. I could have made myself much worse if I didn't. I wish I would have taken more care years ago.
lansbergen
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Staying within ones limits slows the progress and may even halt it if it is started early enough.
A couple of points.
First, what one can do with CFS is variable. In the section on pacing in Myhill's old free downloadable book, she put professional athletes who could no longer perform at their usual level at the higher functioning end of CFS. I was not an athlete but I came from a point where I was walking/hiking 50-75km a week. In my first year of CFS, 2003, I would walk 10km or so and then crash for two or three days and then do it again. I had not got the memo about pacing. My diagnosing doctor had no trouble recognising this as CFS.
(BTW My mental fatigue was much worse than my physical fatigue. I did a QEEG about 8 months in and was told that the noise was swamping the signal. I had major issues with aphasia, could not smell or taste and had trouble controlling my muscles etc. I also had chronic migraine and it was hard for me to separate out a lot of the symptoms, it was not until I came to this forum that I discovered that my issues with noise and light could be CFS symptoms too, I always though they were from the migraines.)
Second, re cmt12, is that in my case, pain is not the issue. I have pain of course, but I can easily push myself too far, to the point where a muscle fails or starts shaking, for example, without feeling any increase in pain.
And I am finding my attempts at pacing really difficult. Over the last three months I have been trying to be smart about this, I have been doing bodyscan meditations and had hoped that that sort of awareness of my body would help me work out when to stop. But last Sunday, for example, I walked down to the markets and bought fruits and vegetables and walked back (2.8km). This has been the big activity of each fortnight since December (when I had a completely unexplained improvement) and I had managed to do this for 5 of the previous 6 markets with no real problems (on the sixth I could not manage it and got lifts both ways). On Sunday I felt good walking to the markets and only needed six or seven short rests on the way home, and I felt good when I got home. The rests were just pauses really, a few second of standing still before continuing up the hill, and are a normal part of the round trip I did not see them as some sort of omen. Then I pretty much just crashed, I was wrecked for most of the day and by 10 am monday I was feverish, fluish etc and I am only starting to feel better today (Thursday). There was no pain, and certainly no fear of pain, there was just a collapse.
I don't know about Jeff_W's idea about creating a surplus. It sound's wise. But to stop before your warning signs arrived you would have to have predictable levels of energy, and I cannot see any patterns yet. I seem to vary too much from week to week. And I also have that problem of needing to do more than I can do much of the time. Hope it works for you though Jeff.
First, what one can do with CFS is variable. In the section on pacing in Myhill's old free downloadable book, she put professional athletes who could no longer perform at their usual level at the higher functioning end of CFS. I was not an athlete but I came from a point where I was walking/hiking 50-75km a week. In my first year of CFS, 2003, I would walk 10km or so and then crash for two or three days and then do it again. I had not got the memo about pacing. My diagnosing doctor had no trouble recognising this as CFS.
(BTW My mental fatigue was much worse than my physical fatigue. I did a QEEG about 8 months in and was told that the noise was swamping the signal. I had major issues with aphasia, could not smell or taste and had trouble controlling my muscles etc. I also had chronic migraine and it was hard for me to separate out a lot of the symptoms, it was not until I came to this forum that I discovered that my issues with noise and light could be CFS symptoms too, I always though they were from the migraines.)
Second, re cmt12, is that in my case, pain is not the issue. I have pain of course, but I can easily push myself too far, to the point where a muscle fails or starts shaking, for example, without feeling any increase in pain.
And I am finding my attempts at pacing really difficult. Over the last three months I have been trying to be smart about this, I have been doing bodyscan meditations and had hoped that that sort of awareness of my body would help me work out when to stop. But last Sunday, for example, I walked down to the markets and bought fruits and vegetables and walked back (2.8km). This has been the big activity of each fortnight since December (when I had a completely unexplained improvement) and I had managed to do this for 5 of the previous 6 markets with no real problems (on the sixth I could not manage it and got lifts both ways). On Sunday I felt good walking to the markets and only needed six or seven short rests on the way home, and I felt good when I got home. The rests were just pauses really, a few second of standing still before continuing up the hill, and are a normal part of the round trip I did not see them as some sort of omen. Then I pretty much just crashed, I was wrecked for most of the day and by 10 am monday I was feverish, fluish etc and I am only starting to feel better today (Thursday). There was no pain, and certainly no fear of pain, there was just a collapse.
I don't know about Jeff_W's idea about creating a surplus. It sound's wise. But to stop before your warning signs arrived you would have to have predictable levels of energy, and I cannot see any patterns yet. I seem to vary too much from week to week. And I also have that problem of needing to do more than I can do much of the time. Hope it works for you though Jeff.
lansbergen
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Yes that is the problem.
@Richard7 try to give yourself at least 2-3 days of pacing (more rest than usual) between activities. Plan ahead, if you want to walk to the market don't do too much the day before or the day after . . . . . . prepare meals ahead of time for the days you want to go out so that you don't have to cook on that day etc. this includes talking on the phone, if you are feeling mental fatigue then limit your talking because this also drains energy reserves.
Believe it or not it actually becomes second nature to plan ahead. I've trained myself to do this and I haven't hit PEM for several months.
Believe it or not it actually becomes second nature to plan ahead. I've trained myself to do this and I haven't hit PEM for several months.
Mij,
I certainly get the deal with meals. This week I have been relying on roasted meat and veges with raw greens and fruit. Maybe 30 minutes active work for about three days worth of almost ready meals. When I was less well I used to take every good day and cook a dozen meals or so and freeze them for the bad days. Of course that was often pushing things too far too.
I have been keeping a symptom diary for my doctor, and I just went back and checked it and the reasons are all there. I had a lousy nights sleep, my neighbours had a party that kept me up till after 1AM I got about 5hrs sleep and then rested for an hour or so. before heading down to the markets a bit after 8. Yesterday all I could remember was how good the walk was, and it was a wonderfully cool morning and my vision was better than usual, but I forgot the context.
I could claim that this was the exception, there are other cases that really are unexplained, but this sort of autobiographic memory is one of the areas in which I fail badly. I probably just have to look more closely at my notes.
Since reading your comment this morning, I have been thinking about stimulants. I know that when writing about sleep Myhill talks about that moment in the evening when you desire a cup of tea or coffee as being the peak of a 90minute sleep wave. Her advice been to skip the tea and be ready to go to sleep in 90 minutes. I am thinking that maybe I should be skipping the tea or cacao or whatever and having a rest whenever that desire strikes. It would be different I have a couple of pots of tea most days, and use a mid morning cacao with coconut cream as the carrier for CoQ10 and other fat soluble supplements. But there is this idea that coffee or whatever it is that you are using is just a mechanism for postponing rest, which is the opposite of pacing. What do you think?
I certainly get the deal with meals. This week I have been relying on roasted meat and veges with raw greens and fruit. Maybe 30 minutes active work for about three days worth of almost ready meals. When I was less well I used to take every good day and cook a dozen meals or so and freeze them for the bad days. Of course that was often pushing things too far too.
I have been keeping a symptom diary for my doctor, and I just went back and checked it and the reasons are all there. I had a lousy nights sleep, my neighbours had a party that kept me up till after 1AM I got about 5hrs sleep and then rested for an hour or so. before heading down to the markets a bit after 8. Yesterday all I could remember was how good the walk was, and it was a wonderfully cool morning and my vision was better than usual, but I forgot the context.
I could claim that this was the exception, there are other cases that really are unexplained, but this sort of autobiographic memory is one of the areas in which I fail badly. I probably just have to look more closely at my notes.
Since reading your comment this morning, I have been thinking about stimulants. I know that when writing about sleep Myhill talks about that moment in the evening when you desire a cup of tea or coffee as being the peak of a 90minute sleep wave. Her advice been to skip the tea and be ready to go to sleep in 90 minutes. I am thinking that maybe I should be skipping the tea or cacao or whatever and having a rest whenever that desire strikes. It would be different I have a couple of pots of tea most days, and use a mid morning cacao with coconut cream as the carrier for CoQ10 and other fat soluble supplements. But there is this idea that coffee or whatever it is that you are using is just a mechanism for postponing rest, which is the opposite of pacing. What do you think?
Coffee doesn't just postpone rest, it exhausts me. Coffee doesn't give us energy, it depletes the energy reserve we have. So yes, it is the opposite of pacing. I certainly don't drink any when I have to go out that day or it will bring on PEM even if I stay within my boundary. I only drink a small amount of espresso once in a while because I enjoy it but only before noon.
I think herbal teas without caffeine are ok if you enjoy that. Funny, I also drink raw cacao with coconut with my CoQ10 in the late morning. CoQ10 can also give a stimulant effect to some of us. I take a break from it from time to time because it interferes with my sleep.
Keeping a journal is a good idea, this way you can keep track of things. Once my illness leveled out I was able to figure out my energy reserves and avoid PEM. It's difficult to know though if someone is very sick most of the time.
Thanks Mij,
there are two ways I seem to have tea, for example, one is where I am having trouble understanding a video or a posting or something and I get up make tea or whatever and it is clearly a case of pushing through the fatigue: so a signal for a rest. The other is, for example, when I make a pot of tea before having an epsom salt footbath, something that I perceive as relaxing. I was really only thinking about the first class of stimulant usage, but maybe have to think of both.
I guess the trick would be to try using a herbal tea for the second class, and an hour or hour-and-a-half of rest for the first. The strange thing is that I perceive Pu-erh the tea I am drinking now, as being more relaxing than rooibos or dandelion, or any herbal I can think of. Maybe I am just hooked on this most popular drug.
I am going to have to experiment.
there are two ways I seem to have tea, for example, one is where I am having trouble understanding a video or a posting or something and I get up make tea or whatever and it is clearly a case of pushing through the fatigue: so a signal for a rest. The other is, for example, when I make a pot of tea before having an epsom salt footbath, something that I perceive as relaxing. I was really only thinking about the first class of stimulant usage, but maybe have to think of both.
I guess the trick would be to try using a herbal tea for the second class, and an hour or hour-and-a-half of rest for the first. The strange thing is that I perceive Pu-erh the tea I am drinking now, as being more relaxing than rooibos or dandelion, or any herbal I can think of. Maybe I am just hooked on this most popular drug.
I am going to have to experiment.
@Richard7 have you tried organic green gyrokuro tea? They contain theanine (gyrokuro having the most) which migitates the negative aspects of caffeine. So you can feel more alert when you need to and not get overstimulated with the caffeine. This tea does not bother me at all.
No, well not so far as I know. I have had matcha which is grown in a similar way, but not for a decade or so. Most of my green tea gets changed into kombucha which I think would reduce the L theanine content as oversteeping turnes some of the theanine into the D form and I guess sitting in a jar fermenting for three or four weeks may do the same.
I have never really read up on theanine before, I had read of it as an advantage to be had by drinking green tea I just had not bothered to read what it does. This morning I read on wiki that it increases alpha waves, which reminded me of a summary of the IACSF/ME 2014 conference that mentioned that Marcie and Mark Zinn had done research showing that people with CFS had lower alpha wave activity and higher delta wave activity during the day than people without CFS. I don't know enough to know if this pattern is a symptom of our need to have a rest, or a problem that should be counteracted.
I have never really read up on theanine before, I had read of it as an advantage to be had by drinking green tea I just had not bothered to read what it does. This morning I read on wiki that it increases alpha waves, which reminded me of a summary of the IACSF/ME 2014 conference that mentioned that Marcie and Mark Zinn had done research showing that people with CFS had lower alpha wave activity and higher delta wave activity during the day than people without CFS. I don't know enough to know if this pattern is a symptom of our need to have a rest, or a problem that should be counteracted.
WoolPippi
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Can you talk a bit about prioritizing while pacing?
I'm sick and tired from having to list my needs and wants for each day and then choosing the few I can manage. Always with the down scaling. Always the thinking. Always the decision making.
How do I prioritize my daily day without blowing all the energy on fretting about it? How do you?
Secondly, I now have the luxury of gaining so much health through pacing (amongst others) that I now have one slot per day for something else then managing this disease or my house hold. There's now even a vacancy in my brain to think about something else again. I'd like to think about art or science or illustration or wool craft or clever puns or writing or gardening or nature.
But there's only a 45 minutes slot for one of these.
How do I choose? How do I constrain myself to only one so I'll get at least something done? My love lies with illustration but it's an elusive craft. It's not suitable for "sit down and work for 10 minutes", you've got to get in the right mood and since it's so important to me it scares me and I procrastinate. Just like I would when I still was an architect. The wool craft is forgiving and it's what I end up doing or I use my 45 minutes for cleaning the house or something else useful or for writing posts on the internet. But it takes away all my other opportunities and my soul is crying.
I'd rethink and prioritize my interests. But thinking about it wipes me out. It's much easier to just float through my existence for another day.
Or I could shelf all these interests for good and just be Zen and in the moment. There's no worth to be gained as a human by pursuing my interests. It's not where life happens. (If I'd make this resolve my soul would stop crying too. It's the unfulfilled possibility that keeps me on edge.)
Any thoughts?
Thirdly and least interestingly, I have noticed my waves of fatigue come if I do not take a horizontal rest in the few hours after I eat. It seems my body prefers to concentrate all it's energy on digestion in the duodenum, which starts approximately one hour after eating. If I neglect to lie down in the hours after eating the waves of fatigue will come. Perhaps you find this correlation too.
jeff_w
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Hi @WoolPippi -
Really interesting questions.
The way I handle pacing is this: I spend my energy on things that give me a sense of purpose, and I take frequent and peaceful rest breaks.
I don't fret over the many things I wish I could do, but can't, due to limited energy. I have learned to let those thoughts go, because they make my life worse. What works for me is remembering how sick I used to be, back before I had the "luxury" of being able to do anything other than manage my illness. I think back to last June, when I was completely bedridden and at times needed help just getting out of bed. This helps me feel fortunate rather than cheated. Cultivating this sense of appreciation doesn't mean that I am becoming complacent or that I am going to stop doing all I can to get better. There are still times when I struggle with appreciating all I've gained, and those times can be really frustrating, but exercising my "appreciation muscles" has really helped with the frustration.
For me, "floating" doesn't work. It gives rise to feelings of sadness or, as you eloquently put it, "soul crying." I focus my mind on what I'm doing, whether it's working on my dissertation, cooking a meal, playing a card game, or resting peacefully.
That used to happen to me, but I've started a ketogenic diet, and this no longer happens. Perhaps this diet would help you, too.
WoolPippi
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thank you very much for your answer.
This helps me. Tremendously.
It's not often we get to discuss these topics and you do it very well.
I'm already on a ketogenic diet, it has healed me so much. The after-eating-rests are still needed though. Probably related to protein which is just a food group that's hard to digest for my system and to low stomach acid (caused by low cortisol). My duodenum doesn't function properly unless I lie flat. But that's ok, that's when I practise my appreciation muscles...
Thanks again. I'm off to think about my life and my approach to it.
This helps me. Tremendously.
It's not often we get to discuss these topics and you do it very well.
I'm already on a ketogenic diet, it has healed me so much. The after-eating-rests are still needed though. Probably related to protein which is just a food group that's hard to digest for my system and to low stomach acid (caused by low cortisol). My duodenum doesn't function properly unless I lie flat. But that's ok, that's when I practise my appreciation muscles...
Thanks again. I'm off to think about my life and my approach to it.
rebar
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I just scanned through the postings and didn't see any reference to Dr. Klimas and her recommendation of using a heart monitor. Here is a site that features heart monitors, and extreme pacing. It talks about exercise, BUT,
this is not exercise as is normally understood. I have purchased and now wear a heart monitor and trying to keep my heart below 95BPM is nearly impossible for me. What I'm coming to understand is how dysfunctional my system is.
Check out this site and community and look at the videos.
I am NOT advocating exercise but suggesting a way to better control pacing. Be sure to watch all the videos.
http://cfsknowledgecenter.ning.com/group/theexercisegroup
this is not exercise as is normally understood. I have purchased and now wear a heart monitor and trying to keep my heart below 95BPM is nearly impossible for me. What I'm coming to understand is how dysfunctional my system is.
Check out this site and community and look at the videos.
I am NOT advocating exercise but suggesting a way to better control pacing. Be sure to watch all the videos.
http://cfsknowledgecenter.ning.com/group/theexercisegroup
@jeff_w Here's an article on pre-emptive resting I found really helpful:
http://www.cfidsselfhelp.org/library/4-nurture-yourself-with-pre-emptive-rest
I've been doing it for a few months now and it's really helped stabilise things for me. If I can I lie down for half and hour mid-morning and half and hour mid-afternoon. In quiet with my eyes closed and thoughts drifting (so no TV or music or anything). The idea isn't to sleep, just to relax body and mind. If I sleep I take it as a sign that I need to get back to having early nights, the best pre-emptive rests are when I don't sleep, but feel re-charged afterwards.
Half and hour twice a day is just what works for me, everyone is different. Sometimes if I have a good day I decide not to bother with the rest, which is usually a mistake, so I try to do it no matter how I'm feeling. It can seem like an annoying waste of time / interruption during the day, so I try to look at it as an investment, the hour I lose during the day means I can have more energy and be more productive for the rest of the day, and helps prevent me from being robbed of many more hours when I relapse, which can happen after a series of good days where I do more and more and stop bothering to rest. After a few experiences of that, I am now strict about pre-emptive resting and early nights no matter how well I feel.
Best of luck with your experiments!
http://www.cfidsselfhelp.org/library/4-nurture-yourself-with-pre-emptive-rest
I've been doing it for a few months now and it's really helped stabilise things for me. If I can I lie down for half and hour mid-morning and half and hour mid-afternoon. In quiet with my eyes closed and thoughts drifting (so no TV or music or anything). The idea isn't to sleep, just to relax body and mind. If I sleep I take it as a sign that I need to get back to having early nights, the best pre-emptive rests are when I don't sleep, but feel re-charged afterwards.
Half and hour twice a day is just what works for me, everyone is different. Sometimes if I have a good day I decide not to bother with the rest, which is usually a mistake, so I try to do it no matter how I'm feeling. It can seem like an annoying waste of time / interruption during the day, so I try to look at it as an investment, the hour I lose during the day means I can have more energy and be more productive for the rest of the day, and helps prevent me from being robbed of many more hours when I relapse, which can happen after a series of good days where I do more and more and stop bothering to rest. After a few experiences of that, I am now strict about pre-emptive resting and early nights no matter how well I feel.
Best of luck with your experiments!