tag:blogger.com,1999:blog-4941854812083391099.post8171668194157517739..comments2024-03-07T14:33:24.659+00:00Comments on Just ME: The Exercise Catch 22!Sally Burchhttp://www.blogger.com/profile/09581869564363992356noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-4941854812083391099.post-30873351862165684102014-07-20T12:40:56.042+01:002014-07-20T12:40:56.042+01:00There is some work done now by Dr VanNess etc. who...There is some work done now by Dr VanNess etc. who say that slowing up and breaking each activity into smaller chunks can allow us to do more than pushing on during one session. It's all to do with keeping Heart Rate low.<br /><br />Perhaps consider getting groceries delivered? <br /><br />I agree that the ceiling effect is altered by what went previously. I think every time you challenge it, even mildly, it dips downwards. Yet keeping back from it - as far as life allows - means it doesn't dip down so often in those zigs and zags you mention. <br /><br />The car analogy is good. Thanks for your comments. Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-73750933249818388552014-07-20T12:35:57.407+01:002014-07-20T12:35:57.407+01:00Indeed Ana - resting when instinct says "push...Indeed Ana - resting when instinct says "push on anyway" is the very hardest lesson of all. Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-65385862821580840832014-07-20T12:34:57.551+01:002014-07-20T12:34:57.551+01:00Thank you Penelope. Just need to listen more care...Thank you Penelope. Just need to listen more carefully to my own advice now. ;)Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-21282723055210588282014-07-20T12:34:21.225+01:002014-07-20T12:34:21.225+01:00It's easier to write about how to avoid flares...It's easier to write about how to avoid flares/crashes than it is to avoid them!! <br /><br />Real life is difficult to control... and FM seems to be as unforgiving of errors as ME. No easy answers for any of us yet. xxSally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-21328602673214815222014-07-20T12:32:05.086+01:002014-07-20T12:32:05.086+01:00Indeed. Some nice free articles there as well as t...Indeed. Some nice free articles there as well as their paid programme. I found this article very useful: <br />http://www.cfidsselfhelp.org/library/pacing-numbers-using-your-heart-rate-to-stay-inside-energy-envelopeSally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-27894730525241348012014-07-20T12:29:27.438+01:002014-07-20T12:29:27.438+01:00Indeed the slow movement thing is good because it ...Indeed the slow movement thing is good because it doesn't push above the glass ceiling idea. <br /><br />So hopefully then some recovery might happen. I don't see this as an individual "gradually increasing" but rather as the illness releasing its hold first. No-one should I believe start with the intent to aim for increase.<br /><br />Sadly unforeseen things like a virus can also do damage. I don't have an answer for that. We need answers.Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-89789099660111944412014-07-20T12:24:46.137+01:002014-07-20T12:24:46.137+01:00:D:DSally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-79420620285128669682014-07-19T05:20:45.650+01:002014-07-19T05:20:45.650+01:00I've had this disease for 28 years and I still...I've had this disease for 28 years and I still don't know exactly how much I can do. I had an appointment yesterday, took a cab to get there, stopped at a library and the post office, then took a bus uptown, seated all the way -- 14 blocks. Walked around, went to a jewelry store, chatted with the owner, then felt myself crashing. I thought, "Oh, no, I have to get groceries," and I rushed out to the store, rushed through it and rushed home.<br /><br />I was out for exactly 3 hours and 21 minutes. Left at 1:40 p.m., felt myself crashing at 4:20 p.m. (only 2 hours and 40 minutes later) and got inside the house at 5:01 p.m. Had been on my feet more than usual. The muscle pain in my legs has been awful ever since and I couldn't go out today. So I still don't know.<br /><br />And as far as exercise, it varies. Some days I can do up to 12 leg lifts. Some days, like yesterday, I could only do one. Today I could do 3. It has to do with overall stamina. It's not a straight line going up. it zigs and zags, depending on what other energy is used.<br /><br />I always go back to the gas in a car analogy. We get 10 gallons a week; that's it. If it's used up, that's it. Takes rest to start up again, sometimes for 3 days, sometimes longer.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-84134129383440207562014-07-17T07:26:50.012+01:002014-07-17T07:26:50.012+01:00thanks so much for starting this discussion Sally ...thanks so much for starting this discussion Sally it is so relevant for me just now. Love the graph and the wisdom. At times it can be soooo frustrating to have to pace and pull back on exertion, doing less seems so counterintuitive, but necessary. <br />you have generated a super thread here!!anahttps://www.blogger.com/profile/12494818556523656824noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-75413863597415703402014-07-17T04:18:01.604+01:002014-07-17T04:18:01.604+01:00Thank you, Sally.
I get concerned when people reco...Thank you, Sally.<br />I get concerned when people recommend increased exercise to others.<br />You have outlined the issues beautifully.Anonymoushttps://www.blogger.com/profile/18394975290003261681noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-45422080897999056082014-07-17T01:13:54.389+01:002014-07-17T01:13:54.389+01:00Thanks for this, a very informative & underst...Thanks for this, a very informative & understandable piece.<br />For FM folk the 60% rule is good as well. Fatigue and PEM are also, for some of us, a constant juggling act and if the line or glass ceiling is crossed or broken then we can very soon find ourselves in a major flare.<br />My problem is finding a way to pace, I get so frustrated thinking I should be able to do things, then overdo it and end up in bed for a day or two. <br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-1315670399572892732014-07-16T22:14:54.785+01:002014-07-16T22:14:54.785+01:00Have you checked out the programs offered by
http...Have you checked out the programs offered by <br />http://www.cfidsselfhelp.org/ <br />Some very helpful insights self-help information.MomLadyhttps://www.blogger.com/profile/16749147716580492291noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-53822831534750747002014-07-16T20:13:39.957+01:002014-07-16T20:13:39.957+01:00I think that really breaking that glass ceiling do...I think that really breaking that glass ceiling does not allow remission to the level before that, thinking of some friends who have described their history with this disease. I love the graph, especially as the relationship between the red and blue lines is causal.<br /><br />Some of the folks who have followed Dr Klimas idea of very mild and slow movements, watching heart rate, can very gradually increase physical function, gives me hope, and I am glad to see a few patients who described their improvements (not cure) for us all to read. Hope, but no success for me yet.Sarah Lhttps://www.blogger.com/profile/10674395968982387023noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-53138821243391437972014-07-16T18:20:28.557+01:002014-07-16T18:20:28.557+01:00Yes, makes sense :)
Yes, makes sense :)<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-28151561096365784492014-07-16T18:15:36.000+01:002014-07-16T18:15:36.000+01:00Great advice Leela! Nothing is simple even though...Great advice Leela! Nothing is simple even though we try to find ways to understand and perhaps even control our symptoms, we can still be thrown by little unexpected things. <br /><br />The advice "do less" sounds so simple, but is in reality complicated and involves compromise. Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-46446315364453000742014-07-16T18:11:45.902+01:002014-07-16T18:11:45.902+01:00Indeed personal, and variable, and dependent on so...Indeed personal, and variable, and dependent on so many factors. The deck is stacked against us.... but against all the odds we still try to hold on to our lives as best we can. xxSally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-60954954885304163822014-07-16T18:10:23.170+01:002014-07-16T18:10:23.170+01:00Yes agree! Especially with the sticking to 40% be...Yes agree! Especially with the sticking to 40% below, I too tend to operate much closer to my limits... it is easy to pass on advice I've been given, much harder to follow it for myself!!<br /><br />My own experience to date (which I know is short) is that every time I loose anything, and the loss lasts more than just a week, I have not been able to retrieve it. <br /><br />I also understand that sometimes we can have recovery, but I don't think that is ever likely to come from pushing for recovery. <br /><br />Thank you for sharing your thoughts. It is good to have hope for the future. I just need to be patient..... Sally Burchhttps://www.blogger.com/profile/09581869564363992356noreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-80605656710385191862014-07-16T17:39:57.902+01:002014-07-16T17:39:57.902+01:00Another complicating factor is that the 'glass...Another complicating factor is that the 'glass ceiling' changes, and the amount of energy available one day that can be safely used without causing symptoms worsening (PENE, PEM, PEF...) is not the same the next day. We could have more, or less. So it's not only invisible, it's moving too.<br /><br />As you said, we need to learn all our indicators that we are approaching the 'glass ceiling' and rest before hand. But often that doesn't work for me. I think I've not done too much, have rested enough in between activities......... but the next day am sicker. <br /><br />That why I love the heart rate monitor to help me self-monitor. HR at the present time - go lie down immediately if I go over my ceiling heart rate. Also recovery time - how quickly is my HR returning to a lower level. If taking awhile, do less. And also morning heart rate and average heartrate. If they are high, again know the 'glass ceiling' has lowered and 'do' accordingly.<br /><br />I also have more in my bag of tricks. Always chunk activities into small segments and rest in between. I've relearned how to move, using much less energy. I do my anti-deconditioning exercises a few seconds at a time throughout the day and do them lying down as it takes much much less energy. I stay hydrated, sipping water or homemade electrolyte drinks throughout the day, and especially before and after any activitiy............leelaplaynoreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-14868510244900656862014-07-16T17:38:28.116+01:002014-07-16T17:38:28.116+01:00Good analogy. I think you're right. I'm a...Good analogy. I think you're right. I'm afraid I have to cut it much closer than 40%, though, because 40% below my ceiling would be bedridden. Just managing activities of daily living, such as bathing and preparing and eating meals, puts me close to the limit.<br /><br />I'm not sure that loss of function that comes from breaking the ceiling is truly permanent, though. With very careful pacing and perhaps some luck, I think it's possible to very, very slowly regain at least some of what was lost. I've known of people who have been ill for more than 10 years who have made improvements in their level of functioning. <br /><br />One of the problems with keeping below that ceiling (and one reason your 40% rule is sensible) is that it's not a static point. The ceiling moves, so that what wouldn't crack the ceiling one day, next week might. There are so many variables that affect our energy levels: things like weather, germs our immune system might be fighting off, sensory overload, allergies and sensitivities, etc., etc.ixchelkalihttp://whaledancer.comnoreply@blogger.comtag:blogger.com,1999:blog-4941854812083391099.post-87690688887148496212014-07-16T16:16:03.970+01:002014-07-16T16:16:03.970+01:00Great post and thought provoking. I love your glas...Great post and thought provoking. I love your glass ceiling analogy and also agree it's a fine line, a very personal fine line... which makes it even harder to define! LOLAnonymousnoreply@blogger.com