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Dr Klimas's CDC talk on deconditioning & exercise in ME/CFS on Cort's blog

Discussion in 'Lifestyle Management' started by Sasha, Jan 23, 2013.

  1. Chris

    Chris Senior Member

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    Hi; I am going to tell part of my story, because it controls part of my thinking. I was a very fit and active 70 year old in 2003 when I began to get out of breath after exercise. May 2004 I had a treadmill test–passed all 10 mins with a final HR of 155–the supervising cardio declared "it’s not your heart." But I had felt stressed the last minute, and the day after experienced acid stomach–new to me. A week later woke in the night with ice cold feet, dry eyes and mouth, and a week later could scarcely stand to make supper–OI. Dysautonomia had struck, triggered I think by the cardiac stress and back pressure of what an echocardiogram in June showed to be a "severely stenotic aortic valve," opening only to .7-.8 sq. cm.–normal is around 3.6. My whole body, including my heart, had been receiving insufficient blood for months. Heart surgery followed Sept (bioprosthetic valve, one bypassed cardiac artery), and within 3 months I was again exercising–not quite the man I had been, but happy and active. The dry eyes are still with me, though improving slowly. Dysautonomia was partly reversible through improved blood supply and exercise.

    Two years later had the first bout of ME/CFS–after an afternoon walk, chest pain, raised BP, Emergency visit, "no heart attack, go home." Could not walk far without triggering these symptoms, but cardiologists could find nothing wrong; I improved over the summer, almost back to normal, only to repeat the whole thing early 2008, this time for keeps. I fit well into the ICC criteria–have had night sweats (not recently), brain fog, extreme fatigue, etc–but not much in the way of sore throats, raised temp, swollen lymph glands.

    So most of my symptoms fit into the "dysautonomia" category, and when Klimas says that the first elements to respond to exercise in ME are genes associated with the ANS (I think earlier experiments by the Lights suggested immune stuff, but I will trust Klimas on this) I take notice.

    Watching the videos, I note that Connie gives a slightly more generous figure for HR–220-age x.65–that allows me 91–a bit better! And yet I know from experience that I can often do a minute on the rowing machine and get my HR up to 120 without inducing PEM. And it seems to perk me up a bit. Maybe there is a bit more latitude in this than the video allows, as others have also suggested. A certain amount of experimentation may be useful, if we keep in mind basic guidelines. I also know that my morning BP is just as important as my HR–if it is high, "watch out!–gene/cytokine stuff still active!"

    I think Sushi is right in being disturbed by Klimas' comment that "deconditioning can explain much of the dysautonomia present in CFS," but certainly it can over time make things worse, and perhaps we can use these videos to help us control and even somewhat roll back that damage.

    There is for me too one missing link here–the mitochondria. It is clear that they also are central to our problems; I am not clear how they hook into the ANS and the immune system, but I know they do. I am now taking NT Factor, and think it is helping some–another member of our local group (considerably younger than me) has been using it for 4 months, and reports major improvement–he is a psychologist, and totally credible. And I have found an interesting issue of "Dysautonomia News" (Spring 2003, Vol. 1, issue 2) that contains a short account of a chapter by Brad Chazotte on "mitochondrial dysfunction in CFS" within a book "Mitochondria in Pathogenesis". Recommends carnitine and Q10--surprise, surprise. The journal URL is http://www.dinet.org/newlsletter.htm , from which you can scroll down to this issue. Interestsing to find our disease in that context. And here is a link to an article by Kanjuval, "Autonomic Dysfunction presenting as orthostatic intolerance in patients suffering from mitochondrial cytopathy," http://www.ncbi.nih.gov/pubmed?term=20960537 ; only the abstract if available without pay.

    I do sometimes wonder, though , which name fits some of us best: ME, autonomic dysfunction, or mitochondrial cytopathy: a rose by any other name? Chris
  2. Chris

    Chris Senior Member

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    Just a PS to my last post--I think we are all suffering a bit from whiplash--a few years ago, it was a retrovirus, then in 2011 it was Rituximab and the immune system, and now it is the ANS. Of course all of them have always been in play, but the focus has certainly been shifting around. But I am reminded that Mella and Fluge reported that some 3-10 weeks after the infusions, 67% of their CFS patients demonstrated a strong response across all their symptoms--this is very much more powerful than the slow improvement reported after this "exercise" regime. So I feel that the immune system may still be at the root of our problems. Which is not to say that the Klimas/Sol stuff is not useful--especially since most of us do not have access to Rit.

    Also a quick note; have been watching the Federer/Murry semi-final with my HR monitor on; while listening through the very modest TV speakers, my HR was around 68-72; when I switched to very good headphones at higher volume, it went up to 91! A reminder that "exercise" does not include only physical movement, I think. The sympathetic imagination is a powerful tool, and we are sensorily sensitive creatures! Chris
    Moxie, SOC, Sasha and 2 others like this.
  3. taniaaust1

    taniaaust1 Senior Member

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    Here's the comment I made which I put onto Corts site

    "The ANS/Immune system cascade in ME/CFS suggests that if you can stop the autonomic nervous system from blowing up you may be able stop the immune cascade with all the nasty inflammation that follows."
    Very interesting. I have just moved house and what I noticed was that. My ANS blows up first... and then I ended up virally .. cough and ear ache (I still now have a slight cough). Ive noticed for a while now that my ANS issues blow up more before my ME does.

    As far as exercise goes for my severe ANS issues (dysautonomia.. POTS and orthostatic hypertension along, narrowing of the pulse pressure etc etc) for myself, Im in the subgroup of dysautonomia ME people who to which activity increases ie exercise ..doesnt work for.

    When my dysautonomia was fairly bad eg I couldnt stand without a risk of unconscious collapse but I could be upright if I kept moving,. I made my own exercise program up (after much experiementaion) and found I could actually exercise. Exercise for myself thou I found has to be done in a set way.. eg if I constantly chopped and changed what I was doing as I did it I was okay. I ended up settling on 2 hrs of exercise a day (taken in one hit) in which I ran for 50 seconds then walked (not brisk.. the idea of the walk was to rest and get heart rate down) till I felt like running again (in my case it was walking for 1 to 2.5mins) then run again as long as I could without issues (another 50 seconds).

    I could do this exercise over and over for 2 hrs straight (and without a down turn the next day). I did this daily for months so I certainly wasnt deconditioned. I stopped doing that as I found my endurance and fitness didnt really increase after months (so at that point was feeling extremely disheartened over it.. over doing all this exercise and finding no health benefits at all out of it). I was watching The Biggest Looser at the time and started this exercise program of mine when they started theirs.. I watched them... some of them couldnt run at all at first and had trouble walking 200m...they went from that.. to running 10 kms by the end of the show. My improvement thou after months... my endurance had increased by just FIVE SECONDS in the run and it hadnt improved my POTS or any of my other symptoms either. I felt sooo bummed out about it. I stopped bothering to try to exercise at that point as I'd rather be using my active time more usefully eg to try to get what needs to be done in my house.

    **** Note.. with this exercise thing. Not exercising when it was at all warm was very important in my case.. if I got warm.. my POTS would kick in so bad I couldnt exercise at all. So I was doing this run/walking thing late at night (middle of winter even doing it when it was raining and storming) and while wearing wet clothes (almost shivering at times) to hold the POTS at bay.

    I respect Dr Kllimas and really really hope she makes it quite clear in her talk that this exercise thing doesnt help some of us. (In my case I strongly suspect I have Mast cell disorder going on too due to having a family history of it along with I think I have severe mito issues as I cant do anything repetitive with the muscles.. hence why chop and changing between running and walking may be also helpful to more some)."
    ...............

    I personally think there may be several groups of people coming under the ME/CFS label..
    1/ those who can exercise (the few who are helped by standard GET are in this group)
    2/ Those who can exercise but only in special ways (myself included in that group).
    3/ Those who can only do a few simple stretches per day
    4/ Those who are best trying to do nothing at all (severe bedridden patient group).

    I really wish those posting the stuff on ME/CFS and exercise would stop making it sound like just the one approach will help most. They need to start being clearer that there is different groups and that some of us even if we are doing the exercise which is "right for us".. still dont get any change with any of our symptoms.

    Studies need to be being done about what is different about each of these groups.. not only to find out more what is going on with the different patient groups but also more studies in this area will help highlight that there actually are different groups (so would work as an advocacy thing too).
    Sasha likes this.
  4. Sasha

    Sasha Fine, thank you

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    Whiplash - what a great description!

    That's interesting about your HR. I've just got a finger pulse oximeter (found it easier than a conventional monitor) and am starting to use and and to be surprised at what pushes the reading high (unloading the dishwasher!). I'll look out for exciting TV and high volume!
  5. Ecoclimber

    Ecoclimber Senior Member

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    For many the disabling symptoms of ME/CFS appears suddenly and within a matter of weeks. The patient symptoms meet CCC & ICC definitions. Deconditioning of the ANS is not cure nor cause of ME/CFS. It makes me wonder about Klimas's new appointment as director of the Institute for Neuro Immune Medicine. What's behind it..any quid pro quo? Where does the funding coming from? I never heard of this college neither have I heard of the colleges attended by Connie Sol. They are certainly not prestigious institutions well recognized within the scientific community.

    What is disturbing is that Klimas seems to flip back and forth between psycho-somatic cause/cure of ME/CFS to a biological cause. One questions if this funding by special interest groups favorable to the psych, health insurance and disability industry. Is money now influencing Klimas research?

    Her recent teleconference comes on exercising to bring a cure to ME/CFS falls smack dab into the laps of the Psychobabble community. I do believe the CBT can help manage the stresses of the illness but is no cure nor is PCE/GET,

    Neuroimmune Function, Life Distress, Stress Management Skills and Physical Symptoms in Chronic Fatigue Syndrome





    http://scholarlyrepository.miami.edu/cgi/viewcontent.cgi?article=1348&context=oa_theses

    Results
    Repeated measures analysis of variance revealed a significant Group×Time interaction for PSS, POMS–total mood disturbance (TMD), and QOLI scores, such that participants in CBSM evidenced greater improvements than those in PE. Participants in CBSM also reported decreases in severity of CFS symptoms vs. those in PE.
    Conclusions
    Results suggest that CBSM is beneficial for managing distress, improving quality of life, and alleviating CFS symptom severity.

    http://www.jpsychores.com/article/S0022-3999(10)00447-2/abstract

    Patients were selected under the old Reeves CDC and Oxford defintion.


    Potential participants underwent a phone screening and a psychiatric screening assessment to determine eligibility. At baseline (T1), participants completed the informed consent, psychosocial questionnaires, and the symptom checklist on a scale from 0 (never) to 4 (very often). Sample questions include “How often have you felt nervous and “stressed?” “How often have you found yourself thinking about things that you have to accomplish?” and “How often have you felt that things were going your way?”. Positive items were reverse scored so that higher scores on this scale indicate greater levels of perceived stress. Also administered was the Profile of Mood States (POMS [27]) to measure overall mood disturbance. The POMS is a 65-adjective checklist used to assess total mood disturbance (TMD) as well as seven mood states: tension/anxiety, depression/dejection, anger/hostility, vigor/activity, fatigue/inertia, confusion–bewilderment, and friendliness [27]. Each item is rated on a five-point scale from 0=not at all to 4=extremely.

    It's absolute betrayal to the ME/CFS community to constantly entrench the belief that exercise and CBT will cure what many consider a psycho-somatic disorder.

    Funding by the APA for lobbying Congress to pass bills and fund projects favorable to them amounts to $450 million dollars. The ME/CFS community is no match for that kind of influence within the U.S. Government.

    Eco
  6. SOC

    SOC Moderator and Senior Member

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    Yeah, unloading the dishwasher! What is it with that -- bending and stretching? My poor husband, who is absolutely wonderful at making sure I don't overdo, keeps leaving me the dishwasher chore as something "easy" to do. :p

    Hanging up laundry is problematic for me, too. Bending and stretching again? I'm just not sure what those kinds of tasks are particularly good at increasing HR.

    Isn't there something about elderly cardiac patients needing to limit tasks to those "between knees and shoulders"....? Could this be related?

    I guess I'd better go take a nap, I'm starting to babble. :D
  7. Hope123

    Hope123 Senior Member

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    I wasn't able to listen to the CDC talk so hopefully the full talk will be available soon.

    I think we need to be careful with any statements about activity/ exercise in CFS. One thing about almost all trials of activity and exercise in CFS is that none look at the TOTAL activity burden in people.....i.e. not just measuring how much/ what the effect of exercise is but what happens to people's other activities while they are enrolled in an exercise/ activity program. That is, did they need to stop or cut down on working or other activities to accomodate exercise?

    And I agree with Taniaaust's comment about how CFS may contain different CFS subgroups that respond differently to exercise. It may not only be different subgroups but also when in the cycle of illness a person starts or increases exercise. This section from a 2011 paper states this:

    [http://www.ncbi.nlm.nih.gov/pubmed/21474251]

    The effect of exercise on immune and neural physiology is complex. There is substantial evidence that effects are dose-dependent – sustained exercise regimes with a gradual increase in exertion induce different responses to a sudden bout of high-intensity exertion. The former has been shown to produce an anti-inflammatory effect, depressing serum TNF and increasing serum IL-1 receptor antagonist, soluble TNF receptor and IL-10 concentrations through the actions of IL-6 [96] and [97]. This immunomodulatory effect is driven by mechanical stress incurred by skeletal myocytes, which are the cellular source of the elevated IL-6 seen in individuals who exercise regularly. Serum IL-6 production is proportional to exercise duration, intensity and force exerted [98]. While IL-6 has been classically regarded as a pro-inflammatory cytokine, there is evidence that it has a substantial anti-inflammatory effect on the immune system; it stimulates IL-1 receptor antagonist production and IL-10 production without increasing production of pro-inflammatory cytokines such as TNF or IL-1β [96]. Furthermore, both IL-6 knockout mice and mice treated with anti-IL-6 monoclonal antibodies show elevated basal serum TNF concentration [96]. Therefore, IL-6 production by myocytes in response to physical stress can exert an anti-inflammatory effect on the immune system. There is also more direct evidence of a physiologically relevant anti-inflammatory effect – a preceding regular exercise program reduces the TNF response to Escherichia coli challenge in mouse models [96]. However, the potential pro-inflammatory effects of exercise must also be considered. Exercise increases circulating numbers of lymphocytes, monocytes, neutrophils and NK cells [99], while abrupt high intensity exercise induces production of pro-inflammatory cytokines [100] and [101]. In healthy individuals the pro- and anti-inflammatory effects of exercise are roughly balanced and no significant adverse effects develop. However, in individuals with underlying inflammatory states such as traumatic injury, infection, atopy or autoimmune disease, the balance is disturbed and exercise has a pro-inflammatory effect (discussed in detail in Cooper et al. [102]).
    These considerations may provide an explanation for the unreliable efficacy and potential adverse effects of GET in managing CFS [92] and [93]. If CFS pathophysiology ultimately lies in inflammatory responses to infection, then the variable pro- and anti-inflammatory effects of exercise could either improve or exacerbate disease symptoms on an individual basis. Explanation of this variable clinical efficacy may lie in the sub-groupings of CFS patients described by investigators such as Zhang et al. [9]. It may be that patients with less severe persistent peripheral inflammation receive an anti-inflammatory contribution from exercise, but the same exertions are pro-inflammatory in patients with higher circulating cytokine concentrations leading to exacerbation of symptoms. Whatever the explanation, the use of GET in the management of CFS is in serious doubt, and there stands a need to develop a method of identifying which patients respond poorly to physical exercise and should be advised to avoid GET.
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  8. Sasha

    Sasha Fine, thank you

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    Hi SOC - I've always found it tiring to unload the dishwasher and maybe this monitor is showing me it's because I'm going anaerobic doing it. I usually unload the top rack then come back to the bottom rack later to help pace it.

    I think I read somewhere that if you have OI, then raising your arms above the level of your heart will trigger it. When I read that I realised that for years, during this relapse, I've found everything that involves raising my arms, such as washing my hair or using a hairdryer, very tiring.

    With the dishwasher, I'm wondering if part of the problem is that I'm unloading some of the dishes into cupboards that are about head-height. Next time I unload it, I'm going to use the HR monitor to see what happens if I just unload them onto the counter. If that solves the problem I think I'll just keep all the stuff on the counter all the time and forget the cupboards.

    I don't have a garden so hang laundry in my flat on a clothes horse. Could you do that, to avoid raising your arms? Maybe tip all the laundry out into a basket and put it at waist-height on a chair while you put it on a clothes horse? I'm thinking you could even use a clothes horse if you're drying stuff out in your garden, if you've got one.
  9. mezombie

    mezombie Senior Member

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    I just listened to Dr. Klimas’ webcast of the seminar held at her new clinic. Among others, Dr. Peterson was there. He politely told Dr. Sol that he found his patients hit their AT at 90 seconds, and that was usually while engaging in activities of daily living.
    Thank you, Dr. Peterson.
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  10. SOC

    SOC Moderator and Senior Member

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    It could very well be an OI issue for me. Thanks for the tips! Managing my everyday activities is one of those things I'm always learning more about. Every little bit helps, IMO. :)
  11. Kati

    Kati Patient in training

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    Dr Klimas is taling about yet another piece of the puzzle that is our illness and it's the toughest puzzle to solve ever, complicated by stigma, neglect and underfunding.

    OI, POTS deconditioning, and broken aerobic system are all pieces of the puzzle, coupled with immune defects, viral reactivation, dysregulated hormones,etc.

    The question is, do we need to study and spend millions on deconditioning and blame the patient, (and I do not suggest this is what she is doing, far from it) or do we take this piece of the puzzle and see where it fits in the big picture?
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  12. taniaaust1

    taniaaust1 Senior Member

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    I dont know about AT zones but I once after getting dressed immediately took my heart rate to see what just getting dressed does to it (I hadnt done anything else before that) and to my shock I was in the intense exercise heart zone (the RED zone) according to HEALTHY peoples exercise charts. (I thou wasnt feeling any symptoms thou from that at the time).
    ...........

    Im with what others are saying about raising both arms affecting.. Ive actually had collapses to the floor/ground just cause I raised both arms. For the past few years due to that.. I now only use a clothes horse to hang washing on so Im not raising my arms.

    Another thing Ive noticed is that postural changes other then just laying to standing can cause big heart rate (over 30 beats per min) increases for me.. eg sitting to standing can do it too. or sitting up from laying down.
  13. Andrew

    Andrew Senior Member

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    FWIW, I just spoke with someone who is being treated at the Klimas clinic. She is not being told to exercise. She is being treated pharmaceutically. I add this for some perspective on this whole thing.
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  14. Sasha

    Sasha Fine, thank you

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    Thanks, Andrew. This whole thing is both very interesting and very frustrating - I go over my calculated anaerobic threshold just by leaving my apartment (up two flights of stairs, which is what takes me over) and I would have to confine myself to my apartment to comply with her protocol but I'm seriously considering doing it. But on the other hand, there are so many unanswered questions, including the one of how much of any of her patients' improvement is due to this sole intervention when presumably they're all getting other interventions, including drug treatments.
  15. SOC

    SOC Moderator and Senior Member

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    My AT was first tested ~5 years ago. At that time I thought I was taking it easy. Hah! I could go over my AT just walking across a room. Stairs? No way. I went into major rest mode, ie stopped doing things that put me over my AT, and my decline slowed and I maybe even improved a little. I stopped having frequent crashes and I felt loads better all around. That isn't to say I was well, or that I didn't still crash sometimes, but I considered it a huge plus that I wasn't getting worse.

    If you go over your AT leaving your apartment, then you should be housebound -- that's how ill you are. I know it sucks. I've been there. My family's experience is that none of the other interventions, including drug therapies, work well unless we are staying well under our AT all the time.

    My guess is that's part of what our good ME/CFS docs and physiologists are trying to tell us -- we need to moderate our activity based on what our bodies can tolerate. For some of us it means cutting way back on what we're doing. For others it may be doing a bit more. I had to cut my activity down to almost nothing, get my infections under control and get lots of rest before I could think about getting more active. I think our docs are saying that we need to do enough activity -- even if it's mild in-bed stretches -- to keep some minimal functions working, even if we have extremely low AT.
  16. Sparrow

    Sparrow Senior Member

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    I second this. I managed to put myself into a chronic state of overdoing it even while entirely bed ridden. And was confused about why I just kept getting worse and worse when I was "doing so little." I was just so sick that even tiny things, mental activities, etc. were too much. Things turned around a lot for me when I cut back.

    I think the big clue is how we're feeling, and whether we're improving or worsening overall. If we feel really super crappy all the time, or are getting slowly worse, I think we're probably in a cycle of doing too much. There is always another level of rest to retreat to, no matter how difficult it may be to decide to do it.

    It's a tough, tough process of mourning that loss of functioning, though.
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  17. lnester7

    lnester7 Seven

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    I cannot bend over and feel the rush to head, this crashes me as it does to raise my arms. So if I have the the butt Up and head down, searching, or washing feet.... I get OI crash.
  18. Andrew

    Andrew Senior Member

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    If I leave my apartment it's two flights of stairs down, and two flights back. Do you go into the calculated anaerobic range going down the stairs, or just up?
  19. Valentijn

    Valentijn Activity Level: 3

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    It's horrible being house-bound. Is there any chance you can get a ground-floor apartment, or an apartment in a building with an elevator?
  20. Sasha

    Sasha Fine, thank you

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    I've gone downstairs on two days now wearing the monitor, both times carrying a bag of trash, which might have made it harder, and by the time I was on the second flight, I was over the threshold. I have a weekly home help who usually takes out the trash for me so that isn't a necessary job. I'm going to experiment with going down much more slowly then resting at the bottom before I go out walking. There's also a side alley (eek!) route that I could take to the shops/cafe/library etc that would keep me on the flat - otherwise I have to go down a slope and up a slope. It's a longer route but all flat. My HR isn't going up much walking a few minutes around my apartment so if it wasn't for the stairs and the slope I might be OK. And maybe if I rest long enough at the bottom of the stairs and go up really, really, really slowly...

    I will have to experiment! :confused:
    I think it would be such an upheaval to find an apartment (it took me a year to find this one and I love it), and a big stress to buy and sell and move in that it wouldn't be a good trade-off. I might feel differently if I have to be housebound but I am already largely housebound - I only get out every other day or so for an hour (although getting out makes a huge psychological difference).

    I totally agree. During my first long illness, I was bedridden and also overdoing it by sitting up in bed for too long. I eventually turned it around by resting properly but it's a very hard lesson to learn.

    Usually now I'm stable but frequently get bugs that slam me for a week or so, then I'm back to how I was. But that variability coming in from those infections makes things very hard to gauge, day-to-day.

    I agree about the mourning. I think I've been going through that for the last few days as I've been contemplating the prospect of being housebound but on the other hand it's quite exciting that there might be something I can do to improve my health. I could also benefit at this time of year from being housebound by not being exposed to so much infection.

    I think I can hack it if I know I'm looking at a limited period - the famous 90 days - to see whether it improves or not and while I'm housebound I can work on my leg strength and stamina so that I might actually be able to manage the stairs and stay under that trigger threshold. Then I can review at the end of that period.

    Reckon you're right, SOC! :confused:

    I've got some things to try while I'm housebounding myself, if that's what I've got to do - I'm on MAF 878, I'm trying intermittent fasting, I can try the stretching and strengthening and capacity-building exercises.

    So, a bit of experimenting over the next few days with the stairs and then probably the next three months being housebound as a trial period... :D

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