Last March, I trudged out to the van to install a solar panel. I’d been fighting a cold but this was something thing I dearly wanted to get done. In general, I felt a little activity had been helpful with colds. This time, it was different.
My new approach to health improvement – “Measuring What Matters”
The work took longer than expected but I felt fine afterwards. Two days later, though, the boom came down. I woke up and immediately knew something had shifted: whatever was going on had gotten deep into my muscles and now the glands in my throat were swollen too.
Ten months later, I still have that “cold”. It threw me for a loop, preventing me from attending three ME/CFS conferences and a big family gathering. After trying antivirals and many supplements and the DNRS program for a month or so, by October the cold had lessened but was still with me.
Then, during a long drive in October, I started experiencing dizziness. After a caffeine-fueled return from an East coast trip to see a doctor (ironically), my symptoms escalated. Again, it took two days for the muscle aches and fatigue to explode – leaving me unable to move for a day.
Then, a couple of days later, heart palpitations, dizziness and nausea led me to the emergency room. (I learned that going to the emergency room without prior authorization is a huge mistake financially). Trying to tamp down the dizziness, etc., I stopped all caffeine, and rested more: to my shock, my stubborn 8-month cold began to lift. The muscle aches virtually stopped and over the next month, the palpitations and dizziness slowly disappeared as well.
I pushed hard during the donation drive, used caffeine a couple of times and the “cold” reappeared – although not in full force. I assumed I just needed rest, and so took a day or two off. Then, trusting that my cold would simply dissipate, and determined to gain control of Health Rising’s financials I plunged into Quicken. Four or five days later, the cold in all its glory, deep muscle aches and swollen glands and all, was back. Alarmingly, I had gotten into this fix without using caffeine at all.
Clearly, I needed a new approach. I needed to maximize rest, improve my sleep, reduce stress as much as possible, optimize my diet, and reassess the drugs and supplements I was taking. I needed to get organized, do the right things, and make sure I staying out of my usual push-crash cycle.The problem was that I kept falling off the wagon. I had, after all, just done that.
I needed rest after the donation drive but I only took a day or so off. Then, reconciling HR’s accounts for the first time in Quicken took days of intense concentration I did achieve that goal but the cost was that after a month and a half of progress the cold was back in all its glory –
I was clearly lousy at taking care of myself. I always have been and I’ve mostly been able to get away with it but now I was in near year long dive. Then, in two books, “Radical Focus”, by Christina Wodke, and “Measure What Matters: How Google, Bono, and the Gates Foundation Rock the World with OKRs”, by John Doerr, I came across a practice called OKR (Objective Key Results). Andy Grove developed the OKR approach to productivity at Intel in the 1970’s, and Google and other large companies swore by it.
The light bulb went on. The OKR approach provided a way to hold me accountable. Instead of saying I was going to do something and then hoping I would do it, it provided a way to much how effective I was.
The program rests on three legs: (1) defining an objective; (2) creating key results; and (3) measuring those key results over time. The key is that the key results must be measurable and must be tied to a timeline.
The key results should also be a stretch. They shouldn’t be so easy that they can be readily achieved but they shouldn’t be impossible either. Christine Wodke felt they should be something you think you only have a 50% chance of making.
John Doerr on OKR’s
OKR’s are also made public in corporations in order to enhance accountability (you’re much more likely to keep your promises if you communicate them to some one) and to provide others a chance to make suggestions. Those are two of the reasons I’m making my OKR’s public. (Another is that I just think they’re a great idea :)).
I promise to report back in one month (2/25/2020) on my progress with my OKR’s and, how my health has been affected.
Objective – Getting Over This Cold and Improving my Health
Key Results – My Key Results Over the Next Month Are:
One structure for success – getting a months supply of supplements/drugs together ahead of time.
Key Result: 100% Supplementation Success – take my supplements with food twice a day, and those without food once a day every day of the month. (Chance of success: 75%)
Rationale: supplements and drugs don’t help unless you take them. I used to take supplements haphazardly but I have gotten much better at taking them. My structure for success – a months supply of supplements boxed and ready to go.
Key Result: Get Fitbit sleep scores of “fair” 60% of the time, and “good” 25% of the time. Chance of success: perhaps 50%
Rationale: I believe good sleep is probably a key missing element in my health. I can’t remember when I’ve woken up feeling refreshed over the past 4 decades. Getting refreshing sleep may be a pipe dream but I can definitely improve my sleep by following good sleep hygiene.
Sleep stages – last night – from Fitbit
I started tracking sleep scores (poor/fair/good) on a Fitbit for the first time about two weeks ago. I’ve had a couple of “fairs”, a couple of “poors”, and several times my sleep was too disjointed to allow a score.
I will attempt to get better sleep by:
- Going to bed earlier
- Going to bed at a regular time
- Not eating a large meal before sleep
- Not having any caffeine
- Doing meditative exercises when I wake up, as I almost always do, in the middle of the night.
Key Result: Get 7 plus hours of sleep, 40% of the time, over the next month. Chance of success: 50%
Rationale: Seven hours of sleep is the minimum amount needed before your body takes a hit because of reduced sleep.
Time asleep from Fitbit – last night
Sleep time is 50% of Fitbit’s sleep score. Over the past two weeks, I’ve gotten over 7 hours of sleep twice, have slept as little as 4 hours a couple of times, and average between 5 and 6 hours a night. Last week, though, by going to bed earlier, twice I was able to get over seven hours of sleep a night. Therefore, I will attempt to boost my sleep time by…
Key Result: Hitting the sack before 10 pm, 90% of the time, over the next month. Chance of success: 60%
Rationale: Unless you are a naturally late sleeper, getting to sleep early is crucial for getting the full immune benefits of sleep. I’ve been doing pretty well at getting to sleep early lately. I think I can do this.
Key Result: Do four Dynamic Neural Retraining System sessions a day, 80% of the next month. Chance of success: 35%
Rationale: To tamp down overactive sympathetic nervous system and tamp up parasympathetic nervous system functioning, and improve metabolism, digestion, immune functioning, reduce inflammation, etc.
I’m good at doing two sessions a day – not so good at four. This will take discipline.
Key Result: Do two body-scan/meditation sessions a day, 80% of the month. Chance of success: 50%
Rationale: Again, to tamp down the SNS, boost immune support, etc.. I find the body scan very relaxing at times. I will do this when I wake up in the middle of the night and during my breaks during the day – to provide relief and give my stress response system a break, and to give my immune system a boost.
Key Result: Take 1 complete rest day a week (4 days over the next month). Chance of success: 40%
Rational: Time off to rest could be helpful. I hardly ever take full rest days. It’s worth a shot.
Key Result: Maintain a low carb diet. Chance of success: 60%
Yesterday’s results from the Carb Manager (I did not meet my goal.)
My goal is to maintain a Low Carb, High Fat Diet (12:25:63; carb/protein/fat ratio). Once I am successful at that, I plan to transition to a ketogenic diet. My structure for success includes using the fantastic Carb Manager app, which allows you to simply scan in foods, automatically tells me how I’m doing each day, and has tons of recipes.
Rationale: I’ve never done well with carbs since I came down with ME/CFS. The fact that foods like potatoes, pasta, bread, and rice often put me to sleep, indicate that I’m clearly carb-sensitive. I’ve tried to do keto-like diets but have never actually measured my carb intake before. The Carb Manager makes that easy to do. This is going to be interesting.
Overview
I’ll keep track of my effectiveness at consistent supplement intake, sleep hours, sleep score, time in bed, DNRS sessions, body scan sessions, rest days and carb intake using an Excel file.
Then, I’ll track how effective all that work has been in improving my health by assessing the following measures during the month. Hopefully, I will see improvement over the month:
- days waking up with achy muscles and flu-like symptoms
- average pain level
- average fatigue level
- ?
The Gist
- The OKR (objective-key result) technique was developed by Andy Grove at Intel to spur productivity, job satisfaction and team building
- The OKR technique involves creating major objectives and the key results (not the goals) required to obtain that objective
- The key results should be a stretch and must be measurable and located in time. They should also be made public. They can be used in corporate or personal settings.
- My main objective is get rid of a ten month “cold”
- The key results that aim to achieve over the next month include things like taking my supplements/antivirals, getting to bed before 10pm, getting over 7 hours of sleep a night 40% of the time, devoting a certain amount of time to mind/body exercises every day, maintaining an low carb diet (<59 net grams), getting a certain number of rest days, etc.
- At the end of the month I will assess my success with my key results and how effective they were in meeting my objective – getting rid of this lingering cold.
The Missing App?
What I would really like to do is to assess the effects of many variables (steps taken, sleep duration, bedtime, working hours, carb intake, dietary aspects – dairy, gluten, caffeine; mindfulness efforts, supplements used, etc.) on different aspects of health (sleep score, symptom levels, energy levels, mental clarity).
The Sleep Cycle app with it’s clever “Sleep notes” feature gives you the ability to pick factors and assess their effects on sleep. You can assess the effects of anything from steps per day to dairy intake to sleep time, etc. on sleep. Unfortunately, because the app sits by your bedside and I sleep with the dogs, I imagine it will pick up their movements as well as mine.
Ideas about different apps or products (Excel regressions?) that could be used to assess the effects of variables (diet, supplements, rest, activity levels, drugs, etc.) on health would be welcomed. Likewise, suggestions on how to best use OKR’s or other productivity tools would be gratefully received as well.
Cort,
I hear you. Amongst all the other great points in your article (in particular I think managing sleep is so important), I rate financial documentation as one of the trickiest mental challenges I face. This probably is exacerbated by having no accounting training. I’m no stranger to maths/science. Either way, it is a massive mental challenge these days. And the stress that comes along with it (particularly mistakes) makes you release those systems are unforgiving for mental-capacity-compromised folk.
Thanks for the ongoing sacrifice in keeping this website running! You must have been a force to be reckoned with four decades ago before you became sick.
🙂 Thanks. I have this great yearning to gain control of all aspects of HR – the financial aspects first of all – a daunting task! But hopefully worth it.
Please can anyone tell me if there is a thread about Cort trying DNSR. I have been away from this site for a while and may have missed it.
There’s no post about me but there is a post on someone who went from a wheelchair to recovery on the program.
https://www.healthrising.org/blog/2020/01/05/christines-dnrs-chronic-fatigue-recovery-story/
Well Cort, I’m smiling to myself as I read your OKR ‘resolutions.’ I see just how highly motivated to ‘accomplish’ you are–and accomplish you do! I am similar. For myself, I also notice that my daily ‘success’ rate of doing all my ‘commitments’ (and by this I usually mean similar health practices as you have mentioned for yourself), are sometimes an over-commitment, and that is itself part of the problem. I sometimes stress to get everything done.
Mostly I have low and slowly developed the kind of habits I want, so I am very careful in incorporating yet more stuff to do until the few most important things have become completely integrated. You are hyper productive, so I only mention this out of concern–and hopefully it is unfounded…
Now on to a slightly different topic; I watched this most amazing lecture by Dr. Andrew Maxwell. This is framed for the Ehlers-Danlos community, but if you have a chance to watch it, I think the light bulb will go off about ME/CFS and fibromyalgia and a lot of other issues people here struggle with;
https://www.youtube.com/watch?v=2mIzE2X9OJk&app=desktop
Apparently there is a whole cache of lectures in this group from the ILC for 2019.
For myself, my energy is very slowly rising and I hope that the Hashimotos is the bulk of my problem… And I too have had a ‘cold’ for weeks with swollen lymph nodes, extra tiredness, drippy nose and a sore throat. Yours might really be some sort of infection that’s going around! I don’t know, but hope you get to feeling better soon.
I hear you. It’s possible that I’ve over-reached – something I’m pretty good at (lol). One good aspect of this project, though, is that in order to be successful I have to work and relax smarter.
Thanks for the tip about Dr. Maxwell 🙂
Cort, I take a product called Viralex Attack by Good Heath. If I stop I get a cold within 2 days. It is basically Olive leaf but has another ingredient called Epicor which seems to give the immune system a boost. I suppose you have tried many such things.
I agree,
Committing to overreaching without ongoing evaluation is close to a disaster in workings.
I miss one key objective here if you wish to take this approach:
Measure each day how much you have done and try and find out if you feel less exhausted then usual or not. If not, you have likely done too much.
After each week, try and compare what you have done with what you would have been able to do, with a fairly constant daily load, without being more exhausted then usual that week. The fairly constant daily load is important here. Trying to avoid this ups and downs and ups and downs is important in ME I feel. The ups create deeper downs. Combined, they drag the average down.
This fairly constant load does not mean you can’t have a resting day. On the resting day you chose to do more pleasing things and artificially score resting as a difficult to do task. For most of us, really resting and relaxing in fact is a difficult task. So it’s not lying to yourself.
Once you have established what you can do safely at a constant pace each weak, set 80% of that as a goal for the next week. You don’t want to stay that bad, to keep these colds and crashes recurring. So you need some margin. While this sounds like a plan to do less, long term it likely will allow you to do more. These crashes prevent you to do meaningful things for weeks and let pile up all that work preparing you for a next crash. The goal is to reduce them, to reduce the excessive cost of them.
Then, when you get this constant baseline with few crashes and PEMs, you are ready to pile up more goals.
In short: I described an OKR for pacing.
I’m hoping the OKR approach will provide some benefit for you.
My own experience with trying to manage this disease, using myriad methods and a few props, has been dismal. I finally realized that this disease has its own methods, agenda, and timeline that just doesn’t, at least for me, fit into a “program”, agenda, or spreadsheet of any kind. If I pay attention to my heart rate, my breathing, my muscles, my brain, my gut and do what they tell me I need to do (mainly resting, maintaining fluids, napping, and de-stressing) I do better physically. So, I guess you could say, I have made my body it’s own spreadsheet, prop, and fitbit. The more I tried to fit my health into a prescribed mold of any sort, the worse I felt and the more frustrated I become.
I hear you! This has been my experience also. I rest so much my backside, back and hips are always in pain. No muscle strength left. I am 66 have been sick for 23 years and am dreading getting older with this condition. How can anyone be this sick and keep breathing …a mystery to me.
Adele, I can recommend acupuncture against pain in your hips and back. After four sessions the hip was back to normal, back took me longer. But if there‘s a possibility for you to get treated, please try. Best wishes, Sylke
It will be interesting – if I manage to actually follow this program – if it makes a difference. I think I’m most interested in the sleep effort. I do believe that if I go to bed early enough I will be able to get those seven hours in. Will it make a difference? Time will tell!
I have to agree with you. Most of us within me most likely are already overachievers or type A personalities with a need for order and control. When I read Cort’s program, I found myself immediately exhausted. I also am not good with self-care instead preferring to take on too much and then crash and burn. Given the amount of time I spend any ours, it is difficult to take supplements and eat properly. I am already packing luggage each time I go out preparing for the inevitable visit to the hospital. I think the key is to do the best we possibly can given our circumstances and not set up and possible tasks pour ourselves that will only serve to stress us out even more.
I also have had a long-standing virus that manifested as an ongoing cold. Stress and lack of sleep are my number one issue at the moment. Having recognized., I know how to offload some of those dressers.
So, for me it is all about simplifying my life and that means no spreadsheets. ?
It is late at night or early in the morning depending on one’s perspective and I was dictating into my phone. The phone is having a stroke. Given that I’m not able to edit, try and decipher the my comments to the best of your abilities.
Cort,
Please, how do I learn about “Dynamic Neural Retraining”?
Thanks, pam
Listening and actually implementing the feedback that my body/brain clearly gives me, is what I’ve learnt the hard way (!) works best for me Nita.
It’s just very complicated working out which bit of what I’m doing is good or bad for me.
In general for me, managing my health better sometimes seems a bit back to front.
I need to do less and relax more, and need to eat less carbs, (fructose in particular) to access energy.
One of my issues is that I can experience a fear of my energy levels suddenly dropping. It took me ages before I could take the bar of chocolate out of the glove compartment of my car.
Chocolate would give me loads of energy. It would also put my blood pressure and heart rate up, give me a headache, make it difficult for my eyes to change focus, bring on fainting episodes and by the end of the week, I would sleep for most of the weekend… So not the best choice but at the time it helped me survive.
Tracey Anne, thank you for listing your chocolate ‘side effects’, that was very helpful to me! I’ve been struggling with weird eye symptoms, it never occurred to me to notice if chocolate ingestion has anything to do with it, thanks again.
This is my first time submitting a comment on this site. Though I have been reading everything on it for a long time and is my “go to” for everything ME/CFS. I want to thank you for all your hard work.
I have had this horrid condition for 23 years now and have been home bound 95% of the time. My Doctor visits make up my social life. I am into a 18 month long relapse of symptoms that brought me to an all time low last month.
I had to do something different or I was done for. Some of what you are doing I started implementing on my own but now I want to read those books.
I am on a Keto diet and stopped taking opioid pain meds. I am now trying LDN, hoping it will help. So far my sleep is better and my depression is gone. I have terrible side effects from anti depressant so can’t take them. I am taking supplements daily also. I wish I could still take my pain meds once in a while on bad days, but so far I am managing without.
I am thinking of getting a fit bit but don’t know if I will be able to figure out how to use it (brain fog).
Thank you again for all your hard work. You are a blessing!
Thanks for popping in Adele! Of all the practices I think the keto or rather low carb will be the most difficult. I was astonished to see the apple I ate receive an “F” keto grade. After adding to that some winter squash I only had 5 grams of carbs left for the day…and this isn’t even a full keto diet.
It’s now clear to me I’ve never gone full keto.
Thanks Cort. I went Keto 4 years ago and did quite well for 2 years until I had a relapse brought on by pushing myself and a stressful relationship. It is worth the effort. This time I am doing it through my pharmacist using the Ideal Protein program. It takes all the guess work out and supplies you with all the supplements. I am too sick to do it myself this time and this plan is a God send.
Thanks Adele. I was shocked at how easy the Carb Manager app makes going low carb…Things have come a long way!
The fitbit is v useful I find, and the data in the app is presented in a very useful ‘at a glance’ way, so you can take it in without much thinking required?
Adele, have you tried CBD oil? I would highly recommend it.
I have been under such a great deal of stress for such a long time now but I decided to incorporate herbal supplements specifically formulated for stress. I am taking rhodiola and boswellia.
As someone who spends a lot of time in ers and in doctors offices, your post really resonated with me. I wish all of us better days and hope that each of us will find what works for us in order to give us the best possible life that we can live with this condition.
Thanks Cort for all you do. Best of luck in your efforts and do mind the “over” performing mentioned in the first comment. Maybe it doesn’t apply but just a heads up.
Coffee: I totally eliminated it ☹️ Even my morning coffee (just one!) affected how much deep sleep I got the next night. It wouldn’t wake me but I got significantly less deep sleep (tracked with the Oura ring) when I had a morning coffee.
Looking forward to your update in a month!
Hi.. how is the Oura. I am getting into HRV and finding it v useful. I’m interested to know if the 24/7 HRV tracking is useful and also if it provides HF/LF/VLF data? Cheers, Steve
Thanks for the warning 🙂
I sure do miss caffeine….:( My genetics test indicated that I am a slow metabolizer which makes perfect sense since all I ever needed was a couple of sips to go flying…
What a wonderful drug it was while it lasted.
Please let us know how you do – I need something to keep me accountable to myself – I tend to take care of everyone else first, and I’m so burned out and weak I can’t do anything now. I need to hear success stories. <3
Will do..and we do have success stories coming up.
I definitely can see how the AKR method would work in many areas of our lives. Short achievable actions and implementation of those actions will eventually get you towards the goal of feeling better than you do now. I too am in a crash since last June. Can’t shake it. I was trying to do too much.
We do have a great diet but again fell off the wagon a few times.
To be honest the AKR method sounds like the what we as nurses used to do with each new patient. Nursing care plans to achieve health goals. Data, action needed, implementation, results and evaluation, something like that. Small achievable actions over a short period of time, much easier
Yes, this is exactly what I have been doing – focussing on rest, stress reduction, restorative sleep, low carb nutritious diet and supplements every day. I’ve recently added in an anti-viral supplement – Astragalus, Elderberry and Garlic Complex.
It was Dan Neuffer who sort of gave me ‘permission’ to rest. This time last year I was really struggling – my sleep was severely disrupted, I could hardly eat anything without a reaction, my blood pressure was very high (as I was reacting to eating chocolate) – but I needed that, at the time, to survive the day.
I decided I would try and implement Dan Neuffer’s approach, as in resting, relaxing and improving my sleep. This changed everything for the better. I could feel it immediately – instead of feeling very uptight and highly strung – I sort of dropped down into a more grounded, solid feeling. I was then able to add some olive oil and seeds to my food without getting mouth ulcers and a swollen throat. (In this last week or so I tried some walnuts and can tolerate these too.)
My goal was to try and steadily improve my health over this last year, which I have achieved. More recently my goal was to improve my brain function. It’s taken a bit of time and experimenting but I’ve found that if I supply my brain with a mix of meat/liver/eggs/mackerel, green leafy low carb vegetables, seeds, olive oil, ginger, tumeric and supplements it works pretty well.
What I do now is I poach two eggs in the morning – eat one and take the other one with a bit of my breakfast vegetables/meat/seeds/olive oil mix to eat when I’m out working. I drink Roibos tea and take some in a flask. I am having to wean myself off my relationship with coffee. I even had a very small cup of coffee this afternoon because I ‘felt’ like it. I was reminded again, why I shouldn’t do that. It immediately set off some issue in my brain, which meant my brain was losing energy and not gaining any. I must remember this.
I am a bit of a chancer and will see if I can ‘get away’ with eating/drinking things. It has taken many, many bad reactions to finally convince myself that I really cannot consume whatever it is that I think I absolutely can’t live without.
However I feel that my massively improved functioning is worth my efforts – I can actually feel well. There’s obviously things that have gone wrong with me – if I stray off my particular diet, or go too long without eating, there will be negative consequences. But if I maintain my routine of good sleep, as much rest and relaxation as I can get, regularly eating nutritious food and taking supplements daily, I can feel good and my brain works. It’s a lot of work to just feel ‘normal’ but I think it’s worth it.
Thanks for the good news Tracey – and for saying it so well – “Giving myself the permission to rest”…Good on Dan!
This is exactly what I’m trying to avoid
“I could feel it immediately – instead of feeling very uptight and highly strung – I sort of dropped down into a more grounded, solid feeling”
After 40 years of pushing it, it’s clearly not working anymore. Of course, I had to be forced to change (lol)
This is what I’m trying for as well.
“But if I maintain my routine of good sleep, as much rest and relaxation as I can get, regularly eating nutritious food and taking supplements daily, I can feel good and my brain works. “
I am curious as to why lowering carbohydrates is so important, especially if those foods help you sleep. You report getting not much sleep, in my view. Rarely 7 hours on average, usually 5. Is the sleep after you eat apples and pasta just for a few hours?
I have a lot of trouble with sleep and gave up trying to fall asleep at the same time each night. My body does not go along with that after the early years of this disease. I have not computed my own averages. Often I have a long period of sleep (really long, 12 to 15 hours) after I have overdone in some way; I think if it as crash sleep. 1-2 hours followed by 5-6 hours after I take sleep meds may be typical for me. Summing the data to true averages is tiring, alas.
I suppose all my sleep chaos is one of several reasons I am always impressed at how much clear writing you do.
Try Teecino herbal coffee. It is not decaf. It is naturally non caffeinated. I tried the Hazelnut and it tastes so good. It reminds me of coffee with Bailey’s Irish Cream.
Hi Sarah,
I don’t know if lowering carbs will help with sleep. The only thing I do know is that I don’t do well with carbs. I have heard that a piece of bread with nut butter before bed works well for sleep and I suspect that it does.
Hi Sarah,
For me carbs and particularly fructose, kind of knock me out. I then have sort of unrefreshing drugged sleep, instead of restorative sleep. If I eat corn products, then within 20 mins or so I will have to lie down, it affects my muscles in that my breathing goes very slow and I just lie totally motionless for hours. I also lose the impulse to breathe.
I spent years like that until I figured it out. I’m not diabetic but something gets triggered and I keel over.
Now I can’t eat grains/carbs as they cause what I think is brain inflammation.
I found it very difficult to work out what was causing my issues, especially as my brain wasn’t working very well and I couldn’t remember anything.
I did go around for a few years with glucose in my house, car and bag. However my body now reacts to even the slightest raise in blood sugar and my eyes go blurry and my brain goes fuzzy.
I think we’re all so unique our best bet is trying to work out what suits us.
I love the mocha Teecchino. I’m probably spelling it incorrectly! ha ha.
All these recovery habits are a full time job. Hydration & salts are also critical ones to include.
My supplements became so difficult to do, I even had an excel tracker and then couldn’t follow what I was meant to be doing with it as it had got so complex. Well, complex for my foggy brain. Back on with now tho…
Very difficult to maintain and develop new habits when one is vulnerable to fatigue and flaking out. Good luck with those Key Results Cort.?
So true. It is the hardest time to develop new habits…I think the cognitive problems – the ADHDness, the difficulty concentrating and focusing – play a big role in that. I don’t know if you remember Vince Lombardi’s saying “Fatigue makes cowards of us all”. I don’t know if cowards is the right term but fatigue definitely leaves me feeling weak and makes it harder to move forward.
I forgot to include hydration but that is part of it as well. One big bottle of electrolyte enhanced water (nu-salts I think it is) a day. Thanks for the reminder.
Good luck, Cort. We will all be cheering you on, but do caution you to pay more attention to what your body is telling you than what your Fitbit readings say. My Fitbit readings never correlated with what my LINQ heart rate monitor implant showed. I do find I rarely miss taking my Rxs and supplements when I put them in AM and PM weekly compartments. I’m finding the sheer amount I take to be a bit daunting lately so can’t imagine looking at a whole month’s worth at one time. I take roughly 15 in the morning and 15 at night so 30 a day which comes out to be about 900+ a month! The colorful containers you use would make them easier to swallow though or at least feel more palatable.
900 a month! I’m probably doing 10 2x’s a day so I’m not that far behind (lol)
Thanks for the warning about the FitBit. I also am going to try a polar heart rate/heart rate variability monitor.
Cort, I hope YOU are the recovery story!
If you are contemplating serious keto….have a look at this video which suggests you need to monitor intracellular biotin levels (B7) as biotin is needed in greater amounts on keto to both break down carbs, (esp)fats and proteins but to also rebuild fats into longer chain fatty acids again. The more fat to work with…the more biotin needed.
Lack of biotin has a list of associated symptoms.
The https://www.glutenfreesociety.org/video-gfs/the-ultimate-crash-course-on-biotin-vitamin-b7/?inf_contact_key=36f6448a948adf07b6555cdb43f455f1b7af0999dac2af6212784c39e05d2aef
The video is over one hour but about half is a Q and A.
Thanks Linda!
This method WILL work! Routine is key to managing these type of conditions. It’s hard, your mind will tell you, ooooh I can just eat chocolate and then some potatoes and be fine. Tomorrow I’ll just do some extra work, plus the dsg after I’ll stay up till 12 midnight reading crap in the net and if I sleep 4 hours I’ll be fine! Wrong! Our nervous system is oversensitive and needs routine and careful planning. I use SMART goals. Google it! I have to be strict, I’m crap at it, but when I slip, I pay for it. 7 hours sleep deffo will help, you’ll regenerate not only physically, but mentally too. Taking regular vitamins will help get you’re body into a routine!! Gentle exercise is hard, but will help drive find fatigue and help you sleep. Diet, is the most important factor. Refined carbs are the devil!! They affect your nervous system negatively and can cause fatigue that is crippling. A keto diet is perfect, but you need to plan in one or two cheat sessions a week, or you will crave those banned foods. I swear by setting tangible goals. I’ve also looked at every aspect of my life, from toxic friends to pacing activities. It does work, find what works, keep pushing with targets, review them and plan in cheat sessions. Good luck x
Thanks Marianne. I agree – setting tangible results (in this case) and measuring them makes all the difference! It’s like day and night.
The ketogenic diet was developed at Johns Hopkins to treat children with seizures that could not be controlled with any seizure medication. This is a serious diet that is started in the hospital. It has been very effective in helping children with uncontrolled seizures, but its adoption by the public as a “do it yourself” project is not recommended.
I have serious reservations about the keto diet for ME/CFS. Keto helps you lose weight by putting your body into ketosis. When you eat minimal carbohydrates, your body produces ketones for energy. … As your body steadily burns fat as a fuel source, you will start to lose weight.
Here is the problem. If your case of ME/CFS was triggered by an environmental exposure, you will start to dump fat-stored toxins into your blood supply on a keto diet. This can lead to even more serious problems than you already have.
Thanks Betty – great warning! If you’re losing weight fast those toxins are going to come out big time. Another reason to, as with all things, do this diet slowly. Some people do very poorly on this diet and I wonder if this is the reason why. I hadn’t thought about that before.
I thought the ketogenic diet was first developed by Dr. Robert Atkins, a cardiologist who became a general natural health doctor as well in the 1970s. He put me on it in the early l990s for CFS; it did help. I introduced more veggies than in his classic diet, but find I don’t tolerate grains very well. He helped me figure that out.
This is such a useful approach, thank you! I trained as a health coach last year with Chris Kresser’s academy largely because I realise the biggest blocks with living a lifestyle to best support my health were my own motivation (or lack of) and ability to set clear objectives and goals. The training in motivation, goal setting and behavioural science has been invaluable in this regard, and the OKR approach is a great one to take (has measurable, achievable goals!).
Also it is fascinating how much mental exertion can drain you. I work as a lawyer and, even though sitting down all day, and able to limit noise and light around me, I still find work pushes me passed my energy limits. Cognitive load is a challenge! I am so impressed you manage to pull this blog together so coherently.
I agree. The blogs are exciting for me but they are also the most energy intensive thing I do.
Glad to hear about the training. For some reason, this kind of stuff does not come naturally – but it is very effective and it is a training; eg a practice – a muscle that we can work 🙂
I did OKRs in the corporate world. We reviewed them quarterly. You have set a very aggressive goal for 1 month’s timeframe. That aside, I like what you’ve outlined here and I am going to use it. I am in a situation like your’s and cannot seem to find the self discipline to get it done. So I like some of the tools and tips you’ve outlined. I also set up my meds and supplements for 3 to 4 weeks at a time. Oh, BTW, I gained weight with keto. People with ME/CFS burn glucose not fat for fuel because we are in an anaerobic state most of the time. That’s part of cause of the crash (PEM). Ask Betsy Keller at Ithaca. She can explain it better than I can.
I can gain weight too on carb restricted diets too….My twin brother on the other hand lost substantial amounts of weight.
Good luck with your personal OKR’s.
I’m applying the practice to some things with Health Rising as well
I often fall way, way behind in my emails. That’s stressful and is just not good. If I can get ahead of them every day I will have less stress and it will always be easier to keep up.
So my last task has been ploughing through several thousand emails to set me up for
having an empty email box every night
Ditto with tasks – get up to date with them every day
and some others.
Cort, do you have a “cold” or not? If you don’t, I don’t know what to do about it. But if you do, it can be eliminated by raising the pH of your tissues. Cold viruses cannot survive and/or replicate in alkaline tissues.
Cort I’m so sorry you’ve been through all this – sure hope this new technique will get you over the “cold” once and for all!
Thanks – it’s been an experience and it is leading me to better practices which should benefit me ongoingly. I just had a great DNRS session by the way..I probably wouldn’t have done that without this OKR practice.
It also helps me understand better what others more ill than me are going through.
Ahhhh.. Cort. So sorry you’ve been so sick! Your description of your illness sounds like the beginning of CFS for a lot of us.
I wish you a speedy recovery and good results from the regimen you are now on.
Thanks Jeanie!
I hope to have some better news. 🙂
Cort you need more than just 7 hours! I usually get 9-10 hours a night by taking 5mg of melatonin, zolpidem, tylenol 500 mg and 25mg of benadryl. Also, please try alpha lipoic acid, a good probiotic with at least ten strains and 20 billion colonies, plus magnesium glycinate 2-300mg at night. I was given the last three
Recommendations from an integrative med doc at the Cleveland Clinic. I also take 1000 mg of Lysine and 1000mg of oxymatrine daily. I’ve been doing very well on this regimen for the past few years and I don’t crash very often, mostly after babsitting grandkids but it’s worth it! Take care!
Nurse Jane
Thanks for the tips Jane. I would love to get 7! Last night I got 5 hrs 20 minutes. My sleep when I get it is generally “OK” – I usually get plenty of deep sleep – If I can get the quantity up I think I would really benefit.
Jane
do you mind if i ask where do you get the oxymatrine? your post is inspiring to me. sounds like you are doing pretty well! I see that it inhibits viral reproduction. I think I need that for ebv / hsv-1 along with the lysine thank you
cb
If you feel sleep not refreshing then i found infrared sauna and light box first thing useful and more recently measured my sleep time oxygen via SP02 wrist monitor, turns out bad days are preceeded by poor overnight oxygen levels which also tracks with the amount of exercise/stress and to diet to some degree but still working out the exact causes. To improve oxygen im using cpap device and an oral appliance, this has helped.
When i feel better when i wake up its interesting that the infrared sauna doesnt seem to offer as much benefit and my overnight oxygen levels through the night were better. I know there is more to this and my REM sleep via oura ring tracking is limited deep sleep fine since fmt.
BTW i do all the sleep hygiene stuff and have been low carb / keto for many years now but needed to look else where for gains and i think sleep is that area. Ive done fmt and numerous gut protocols and have been formally given IBS diagnosis in past. People may want to try immunolin suppliment this enabled me to eat a broader range of foods otherwise good probiotics and some herbal treatments have helped. I am mostly carb intollerant as this greatly makes IBS-D worse.
Like others i have a limited diet, fatigue and broken sleep despite bed at 8.30pm everynight, get up at 5am.
Cort thank you for this amazing website, it really helps to hear everyones journey and experiments. I hope you and the rest of us make some gains soon.
Infrared sauna is definitely on my list at some point.
We may be very similar as I can got to sleep just fine but almost always wake up early. I don’t have sleep apnea but I would like to get a oxygen tracker. That would be fascinating.
Well, I admire you for holding down an actual job and pushing through projects while dealing with CFS. I sometimes do that, but I still can’t imagine doing it for living despite that I’ve improved enough to be able to ski (with the mandatory price of 3 day recuperation). I’m too lazy I guess..
I measure only 2 variables to manage my CFS: activity level (input) and health level (output). Sleep for me is automatically determined as a function of the two, as long as I don’t perturb it with caffeine after 4PM or Sudafed after 2PM. Ironically I sleep less when my health level jumps. I was sleeping less than 6 hours when the constant need to lie down suddenly went away for a week. Conversely, I sleep 9 hours when I crash badly.
The difficulty in managing CFS lies in the difficulties measuring these variables. There isn’t any objective way to measure them, so far at least, so we pace subjectively and empirically with bunch of rules of thumbs.
You could count steps, calorie expenditure, heart rate, etc, but they all have short comings and does not measure all stresses on our biological transducers accurately enough. Pushups, for example, does not register any steps and the heart rate hardly budge after 2 squats that can trigger PEM.
I’ve tried many different variables and their permutations. (It used to take 30 sec to process 1 week data on my i5 laptop). The measure that best predicted my health level the next day has been the accumulation of exponentially aged calories. You can pull out minute-by-minute data from fitbit server and then you can sum them with exponential decaying of each over time. I then add that value over the last 3 days. The higher this value, the worse my health becomes the next day.
Over time, however, the best predictive variables has gradually shifted as I moved toward mild end of the spectrum. And now 1 day sum or plain total calorie expenditure or total number of steps predict as well or better, except when I crash.
At the end of the day, the subjective measures and rules of thumbs work as well as anything measured by an activity tracker for the purpose of pacing. Activity trackers may help normal people, but they are neither precise or accurate enough for CFS patients who are super sensitive to exertions. It would be nice though if we have something that automatically warns us to back off when we are doing too much, so that we don’t have to resort to ad hoc “50% solution” leaving the other 50% on the table.
TK I was interested to read your comment about doing well with 6 hours of sleep.
I definitely sleep less now than I used to. I’m a naturally early riser. Through my previous life I would generally go to bed about 10-10.30pm and wake up about 6-6.30am. I was no good at lie in’s – I would feel sluggish for the rest of the day.
In the last week or so, I’ve been nodding off, while reading at about 8pm. Then I would go to bed and wake up around 3am! I’d panic a bit but surprisingly I was fine. But I do consistently get better quality sleep now.
If I can stay awake for the evening and go to sleep about 10-10.30pm, then that works best for me. I rarely get woken by my alarm at 6am. I usually wake between 5 and 6am. I get up then – the dogs expect me to appear and one will bark to get me going.
I recommend binge watching to stay up late 🙂 I’ve been doing that lately to finish all 5 seasons of Breaking Bad before my subscription runs out.
Anyway, you and I seem to be lucky cases without too much sleep problems. The patients that I feel most sorry for are the ones that can’t sleep despite the crushing fatigue and sickness. I can’t even begin to imagine what a horrible existence that might be.
Yes, horrible to get caught in the no restorative sleep cycle. I do consider myself lucky that whatever I ‘have’ I can make a difference to my well being. Not everyone is so blessed.
Could you have Valley Fever instead of a cold? Valley Fever is fungal and is on the rise.
I’ve definitely been exposed but this cold came from another person who had it. Valley Fever is something I should check out if it hasn’t been. I’ll have to check. Thanks for the suggestion.
You seem to be certain that you do have a cold. In that case, raise your tissue pH by the following dietary means:
1. Eliminate all combinations of starches and sweets, such as cookies, cakes, pies and pastries.
2. Eliminate meat. For protein, choose eggs, dairy and vegetable sources such as beans and lentils.
3. Consume raw vegetables and fruits liberally, with the exceptions of cranberries and plums. Drink as much stevia-sweetened lemonade as you can stand.
If you do this for a week and you don’t see any change in cold symptoms, I’ll pay you for misleading you and wasting your time. Seriously.
Over two years ago I started following Dr. Sarah Myhill’s diet which is basically a keto-paleo diet and within six months I was out working in my gardens sometimes 2 and a half hours. What I noticed was I got tired and not sick for the first time in years so I became a believer in diet. Still had issues with sleep, however. I have started neural retaining which I read about on your site and feel a shift in the quality of my sleep. Seems I am beginning to get sleep which restores as I wake feeling a desire to “get moving “. So hope this continues! Thank you for such a wonderful site and I have lost count how many times I have recommended it to others. Do hope you will find what helps you feel better!
Just thinking of diet myhead swirls! Otherwise, I try to keep regularity in my life, I’m trying I said! And that is about the most helpful so far plus body scan/meditation. Then I and myself know what’s up, and no unnecessary energy needed for planning 😉 . Helps sleep and memory.
And also never to forget to enjoy, never forget the life outside of sicknesses.
I’m both a newbie and an experienced one, also an educated
(to some extent) one. The last one is escpecially helpful to not hunt the holy Graal. It will come – or not – but it cost a hell of work, energy and most of the times lost hope in each search.
Oh, and there I stop. I’m in a hot bath, and my mind is somewhat desintegrating.
I like all the clues, but building a rigorous scedule, I can’t do, can’t manage, can’t keep up with.
I love the body scan. It is so much easier and works much faster for me than meditation.
Hi Cort (and all) – Thanks for your very personal piece. I didn’t realize the cold you had a year ago was still sticking to you, among other things. Very interesting list of things and resolutions, as it were. One that really struck me was your goal of taking one day off per week just for rest. When I first got waylaid by CFS, back in 1995, I didn’t realize it would become a lifetime thing. I set my goal that every Wednesday would be my spa day, devoted solely to rest, healthcare, restoring activities. That did last for about a year, when the world started pressing in. I found an alternative self-care strategy in Julia Cameron’s The Artist’s Way: taking oneself on an artist’s date with yourself once a week (which can be a whole day, depending on how you view it), such as a movie, a park, a museum, I suppose a daytime concert, maybe an at-home thing though it’s hard to really self-restore when surrounded by all the things reminding you what you need to do. Cameron also prescribes Daily Pages in that book. It is a really wonderful way to shift gears from a daily life that wears a person down to beginning a little more self-care through self-awareness, without taking up so much time that most of us might fall into considering it “selfish.” I think the book is still in print. She’s followed up with several sequels, but I think the Artist’s Way is still the classic.
Thanks again for all you do, and I hope you can get rid of that cold. Your newsletter is wonderful; but if you cut back 30% it would still be wonderful.
PS “Daily Pages” is my renaming of Julia Cameron’s “Morning Pages.” I did them as she recommended: write out three 8.5 by 11″ pages first thing in the morning, without self-editing at all, just letting flow what flows. Must be done, though, by hand, not on computer or typewriter. I found it took about 20 minutes for me, which was perfect since I need to wait 20 minutes after taking my Thyroid med before I can eat. A good friend of mine with small children could not take the time first thing in the morning, so she did “evening pages”. NB this is not the same as a diary or a journal — it is just free-flow handwriting for however long it takes to fill up three pages. It’s wonderful to helping to free mental clogs and let things flow.
My goodness, Cort. Reading your self help schedule nearly caused me to faint. I also had the notion during Nov and Dec, maybe even as far back as Oct, that your blog publishing schedule had accelerated. (I may have made this up. It just seemed like every time I opened my inbox, there was another post, or even two.)
I’m a bit scared to say this outloud for fear of jinxing it, but my sleep has been absolutely wonderful (usually 8 hours) for months now. This after years of that wired but tired syndrome of not being able to sleep long or deeply. I’m not sure what caused the shift except for simply giving up trying to control it or anything in my life. I gave up on being ambitious. Now I can say with utter pride, I lack ambition. For me, with all of these “take control” notions, it’s a supreme triumph. No striving. Just being. If I can’t sleep until 4 a.m., that’s fine. I’ll sleep from 4 to noon. I realize that this isn’t something people with pets or children or a job might be able to do. But I feel very grateful to be able to sleep, whenever it comes.
I wish you the best with your new program and look forward to hearing about your results. I truly hope it works toward better health and well being for you. I know we count on you to keep us updated on what’s happening in ME/CFS world, and I hope you know that we won’t go away from HR if you publish slightly less often. You’ve built up a fan base you’d have to run off with a stick. I’d love to hear you say you’re taking two days off a week. Matter of fact, I’d double my (huge 🙂 monthly contribution if you would do that. Game?
Hi Sarah,
I love your comment!
‘No striving. Just being.’
I’m not really trying to get anywhere now – just slowly working away at improving my health and being where I am.
I know I’m relatively new to HR but I too think that if Cort’s health would improve, if he took more time for himself and was under less pressure, then I would think that’d be a good way to go… ?
Hi Cort, I wish you well with keeping track of it all, I know that level of detail tracking is too much for me – yet I believe I can incorporate one or two of your ideas and at least make a start.
I also identified with some of the comments – so many of us struggle with the side effects of inactivity, including insomnia and deconditioning. This is a vicious cycle – as we lose our muscle due to inactivity, we are also losing the primary sites for energy producing mitochondria (as I understand it, these are most concentrated in muscle).
I’ve recently read about a technology that stimulates muscles very rapidly – commercially available for cosmetic purposes (improving muscle tone), but essentially it is magnetic muscle stimulation, which has been around for sports medicine and other purposes for many years:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3880086/
It “exercises” muscle passively – with no conscious exertion or aerobic involvement.
My question is, has anyone tried this technology to prevent deconditioning or to regain lost muscle, and if so, did the treatment (1) work, (2) result in serious side effects and/or long term crashing? I’m not sure if this would be safe for us, because the number of muscle contractions per session seems very high. If anyone has tried it and come through it safely, It seems like it could be a legitimate treatment to prevent or slow muscle loss in all kinds of illnesses such as ME, muscular dystrophy, etc.
this one indicates it is very effective in repairing trauma in mice: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5130145/
Recommendations by physical therapists: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5683854/ \
Study on abdominals showing increased muscle strength and endurance with reduction in waist size, but no weight loss or reduction of BMI https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3880086/
certain types of electrical stimulation (including transcranial) are effective at treating spinal injuries, stroke, etc.
https://www.ninds.nih.gov/disorders/patient-caregiver-education/hope-through-research/spinal-cord-injury-hope-through-research
https://www.ncbi.nlm.nih.gov/books/NBK526087/
This could be used to prevent muscle atrophy, which in turn could give us more energy producing mitochondria and an enhanced distribution network…. https://www.nih.gov/news-events/nih-research-matters/muscle-mitochondria-may-form-energy-power-grid
And finally, a quote that jumps off the page from this paper: https://www.nature.com/scitable/topicpage/mitochondria-14053590/
“For example, repeatedly stimulating a muscle cell will spur the production of more mitochondria in that cell, to keep up with energy demand.”
If anyone has had any experience with this, please share.
Thanks in advance.
Kate and Sarah R,
I have used Interferential Therapy for about 15 years for fibromyalgia pain, which is a form of electrical stimulation similar to TENS, but is a more tolerable sensation and works at a deeper tissue level. My device packed up recently and I bought a new one (TENScare Flexistim Multi Mode Electrotherapy Unit) that also incorporates micro-current stimulation as well as the interferential. Micro-current stimulation is safe to use on the face which helps me with the pain from trigeminal neuralgia. It takes about a week to 10 days of daily use for an hour before you see any difference, and then you can move to a maintenance dose of about 20 mins every 3 days or so. If you lapse then you need to start at the daily dose for 7-10 days again before moving back to the maintenance dose. The Flexistim Multi Mode Electrotherapy unit also has a muscle stimulator, but I do not use it, as it is too much stimulation for me (I have M.E. & F.M), Interesting to note you mentioned that it is used to help Muscular Dystrophy, as my son has M.D.
If you’re concerned about de-conditioning, the other thing that I have found to be really useful is an infrared sauna (you can get pop up tent type ones on amazon), all you are doing is sitting, so it is a passive way to give your heart (muscle) a good work out, and it helps pain, eases movement, improves my mood and energy, but you have to have enough energy to be able to have a shower afterwards as well, which I don’t always have, and that is where I will use infra-red light therapy (Joove red light therapy panels), although not quite as good as the sauna for me, is still is helpful for the mitochondria. My top go to’s are interferential electrical stimulation and the sauna. Hope that helps.
Thanks for the info, Clear Blue Sky. Yes, it helps. I’m considering whether I want to pursue this in any form. I’ll post the results here if I do.
Dear Clear Blue Sky, All your recommendations are fascinating. Thanks for detailing them.
Association Between Sauna Bathing and Fatal Cardiovascular and All-Cause Mortality Events
Tanjaniina Laukkanen, MSc1; Hassan Khan, MD, PhD2; Francesco Zaccardi, MD3; et al
“Conclusions and Relevance Increased frequency of sauna bathing is associated with a reduced risk of SCD, CHD, CVD, and all-cause mortality. Further studies are warranted to establish the potential mechanism that links sauna bathing and cardiovascular health.”
The tracking technology that I use is an Oura ring and it shows that the only activity that I am able to do that gets my heart into the high range, is when I am doing nothing other than sitting in the sauna.
I have tried electrical muscle stimulation and it made all my ME/CFS symptoms worsen. I also respond poorly to massage. Feels wonderful at the time…but my body feels as if I have “exercised” with extremely sore muscles, increased flu-like feelings, PEM, etc.
So the increase in circulation from both massage/electrical muscle stim/exercise makes everything worse. Is it our inability to utilize oxygen appropriately to muscles and tissues? Microcirculation issues? Release of toxins? Or combination of all above?
Researcher Dr. Alan Moreau from Canada is doing research using a cuff to passively stimulate muscles/exercise for ME/CFS patients, so hopefully with his research, along with Dr. David Systom’Systrom’s invasive CPET research, some answers will be forth coming!
Kate, I too would like to know if anyone with ME/CFS has tried Neuromuscular Electrical Stimulation and whether it worked for them, side effects, etc. If anyone in the community has experience with this, please let us know.
Cort, I am in the camp of feeling exhausted just reading what you are trying to accomplish! Measuring and tracking everything takes a lot of energy. As Dr. Bonilla at the Stanford CFS Clinic tells me, our energy banks have $20 in them while healthy people have $1 million. We have to spend our energy dollars very carefully and pace, pace, pace. I wish you could take several months off at some beautiful and peaceful Ayurvedic retreat. Bet it would help. I admire your drive and ambition and so appreciate all you do for our community. We all benefit from your excellent work but imagine it takes a toll on you. Take care and best of luck with your new approach.
Cort, this so tops so many things! First thank you, going to do do these as right now I am in and out phases of just being on the edge. I am in day 35 of fighting off a viral attack, soon as I slack off supplements etc, start sleep deprivation, its onward slipping down the slope, emergency visit will be next that I abhor. So this is timely so right on and encouraging, time to dig into that resiliency and start again…..hugs and blessings to you
Hugs and blessings back! And good luck!
Cort, the year long cold sounds like what I used to struggle with. But in the last 5 years i had only 1 cold/flu.
I think but am not positive of course, it is a supplement I take religiously. because of the magnesium in it.
Cheap and any brand will work, it is Magnesium, Calcium, D3 and Zinc. Whenever i mention this to a doctor or nurse they exclaim “ah, its the zinc!”
Worth a try.
I read halfway through this article and thought “this guy just needs to do something else with his life rather than focus on all this, which just perpetuates itself.” Put your incredible laser focus to use elsewhere, onto something that is bigger than yourself, and bigger than the subset of humanity that reads your writings. You know what it is. Let yourself do it.
I’m not being a troll. I have ME/CFS, too. Just like those with polio, and post-polio, we are a relatively small community. We have to learn to live with it. Sometimes the right thing to do is move on and nurture one’s soul with other blessings. There will be another(s) who will pick up and carry the torch to light the way for this community.
Ernie
I tried this .. I found other things to focus on besides my health and all the management it takes. Especially when the pandemic started I started helping people. Neighbors mostly , 1 was a working nurse she had an elder dog.. so i dog sat from 630 am to 430 pm. after 5 weeks I got really sick and was in bed for a month. I had so much fun (before getting bedbound) that i decided to do it again.. new neighbor with a pup and a friend who’s house got flooded during heavy rains. It was fun while it lasted to put my skills to use. At first I was just getting set back for a week or 2. Now the low grade infections are coming on like a fast moving train and they are knocking me back for several weeks at a time since the beginning of the year. Swollen glands.. deep muscle aches (like Cort mentioned) I also get light sensitivity.
I love helping people. but there is no one to help me when I get bedbound and my own health care becames hard to manage. forget suppliments when I can’t see well or barely get out of bed.. OR when I am well enough to help others.
I hope you are feeling better Cort? Did the OKR work? my brain can’t process at this point but maybe in the future.
I too feel like I need some place / people to help hold me accountable for my own self care. I would think 30 yrs with this I would have learned by now. darn!
I hope everyone is doing well.