Me current improvement 1: What to expect + safety

[dejurgen]

About:
Over the course of 3 years I gradually improved my health from being at less then 5% of functionality and declining fast to exceeding 25% of functionality and slowly improving. I’ve been asked a few times what helped me improving and to write about it. After much hesitation I’ll start doing this. It will be a series meant to be read in numerical order of the topics.

Why hesitating to write about what helped me so far?

• I do not wish to promote things that can fire back on people.
• I do not wish to give people false hope.
• I do not wish to talk too early about it while I am still too unsure as to how it happened and how much of it was pure luck.

Then why am I ready to talk about it now?

• I’ll only start talking about things that repeated well for my particular case, reducing the chance it was pure luck.
• I’ll only start talking about things that start to make sense in my mind. I have plenty of ideas deviating from commonly held views so making sense is a relative thing.
• The need of stories on what helped is big. Please consider it to be but a story to trigger conversation on the forum and let people share their opinions on these experiences.
• With my story I want first and foremost that people who recognize my experiences can join the conversation and hopefully see better how these particular experiences COULD fit into a bigger picture.
• With my story I also want to talk about my failures and the potential pitfalls I saw or stepped in. What is a pitfall for me must not be for others, but at least people should not have to rediscover time and again certain things that can cause crashes by costly experience.
• Therefore I wish to talk first about what I did to improve safety of my own experiments.

Disclaimer:

• Always keep in mind: what works well for one may fire back badly and be very hard to undo for many others. This disease is specialized in diversity of symptoms and of reaction to changes!
• => Just copying what I died WILL get your health worse! Count on it, not adapting to your needs and listening to your own body is a SURE recipe for failure!
• Nothing I tried is science let alone settled and safe science.
• => Keep away from things that you have no experience with and cannot introduce into your life in a very gradual and safe way to see how it fits you!

The herxheimer reaction:

• When something feels like making you worse, 9 times out of 10 it’s just that. I do not deny the existence of a Herxheimer reaction. I just tell that while going from 5-% to 25+% I never needed it once. A clear Herx reaction is IMO often a sign of starting with too high a dose. Going slower for a longer period often yields the same effect minus the cost of the strong reaction.
• IMO due to this lesser averse effects I believe this approach has a lower entrance bar and higher chances of success. I must admit observation is easier when there is a Herx reaction, but what do you observe: success or catastrophe?
• => Try out things SLOW AND STEADY. Try 5 things fast and big and you’re very likely to crash and burn. That’s nothing but plain chance calculations!

Observations do matter:

• When going small and steady, good observations are essential. Therefore trying to avoid having PEMs is very important. Observing small changes if wave after wave of PEM hits you is like reading a compass held in your hands on the deck of a sailboat on a very rough sea.
• => Learn to avoid PEM. I’ll discuss some things that work for me in the series.
• => In order to learn and avoid PEM, learn to keep track of your daily load and keep it fairly constant. Having standard stock daily boring routines does help.
• => In order to learn and avoid PEM, learn to see the early signs that indicate that you are going towards PEM. Discovering this is easier if your days are similar and you have standard stock daily boring routines.
• => When planning on changing something, make sure you have a sufficiently long stable period before doing so. Take notes on how you feel: when things gradually improve it is often hard to distinguish small changes over time. But when successful they do add up over time. Comparing the new situation 2 or 4 weeks later to your notes at the start may show clear gradual improvement that would else not be obvious.
• => Do change only one thing at a time. It’ll be more then difficult enough to determine if it helps let alone keeping track of the individual effects of multiple changes.

Keep Pacing, even your improvements:

• => Do not let yourself tempted to improve faster by combining multiple changes that work well for many others. If you introduce 3 changes and 2 help and 1 makes things worse, the net effect may still be positive. But now you have to keep doing 3 things to only get the net benefit of 1 thing because you can’t separate their individual effects.
• That’s doing way more effort for less improvement in the long run. What’s worse, you’ve introduced a new vicious circle solidifying your disease in the long run. Don’t expect any meaningful improvement in the long run this way!
• => So my success is a LOT about improving my hit to failure ratio’s a bit and strongly improving hit to disaster ratio’s. Even doing so I did hit disaster once so far.
• => Don’t over-invest in effort or hope. As said, my hit to failure ratio improved but only from too low in order to get better to marginally sufficient yielding a slow improvement over the years. Being that ill was hell and extremely hard by itself. Learning to crawl out of it with so few known on even how to start it was and still is an epic journey. Yet, life quality now is way beyond what it was at its worse.

Build a buffer!

• The most overlooked one: INVEST MOST OF YOUR IMPROVEMENT IN BUILDING SOME RESERVES! Your current reserves are non-existing/negative. You desperately need them for better pacing and avoiding PEMs. When investing all improvement into doing more you basically sink your ratio of reserves to work done even further.
• I cannot imagine that to EVER end well in the long run. That ratio was very bad to start with and needs to increase in order to make a decent chance for long turn improvement. It may feel like holding back, but what you actually currently do is push true an insane amount of exhaustion and pain such as no healthy normal person ever does and that includes top athletes.
• Yes, you need to get more work done wright now. Yes people have been doing so much for supporting you up to now. No, spending most of your gained energy now is NOT going to help you nor those people supporting you in the long run. It’s an investment.
• If you did not find anything that worked you couldn’t spend any more energy anyway, so why waste a good chance by overdoing and breaking this one too?
• => Ideally save 80% of improvements in order to create some sort of buffer. I must admit I fail this one myself from time to time, but saving over half of it is the absolute minimum IMO.

Improvement versus being able to work more:

• Currently, I am exceeding 25% of functionality and have a small buffer that is still too small for what I do but at least I have some buffer now. I estimate that I still use about 60% of my functional time to keep my current health level and to work towards more slow improvements.
• After creating a buffer and using my increased energy to maintain and improve my energy I still have limited “free usable” functionality. So for me there is no quick gain!
• I consider maintaining and improving health and sharing ideas and experiences on it my current part time but 24/7 job.

 

[waiting]

Wow, this is just great, @dejurgen!

And congratulations on your hard-earned success at improving your health! That gives hope to all who follow your efforts.

I think it's fair to say that most people with ME have implemented a trial and error approach on their own. Even if lucky enough to have an ME-literate doctor to guide them, it is often trial and error. Over a very long time, this can be a frustrating process. It'll be great to learn about your methods & others'.

Thank you for taking the considerable time to consolidate what you have learned!

By the way, your section on Herxheimer reactions resonates with me -- I agree!

 

[dejurgen]

Even if lucky enough to have an ME-literate doctor to guide them, it is often trial and error.

I did emphasis that it was trial and error to make sure that patients realize it's not a kind of "follow this recipe and you'll get better thing" because it is not!

But it's not blind trial and error either.

At the beginning of my disease I tried things that were supposed to help according to the classic teachings of the medicine and I tried things that were recommended by other patients on the web. Of the recommended things by patients I did try by then non really worked. Of the things recommended by medical science some worked a bit (those came from a ME-literate doctor) and most either didn't work or backfired. The recommended "exercise more" did backfire a lot. The recommended CBT/GET nearly destroyed me.

From that I learned:

1. Doing 20 or so experiments where in the end you only learn if one or more of them works was very wasteful. It's like playing the game "Who is it?" where the opponent has a large box with a 1000 pictures and you have to guess which on he has in his mind. Asking "Is it person 1?", "Is it person 2?"... "Is it person 20?" gets you very likely nowhere after 20 questions. Asking questions like "Is the person male or female?", "Is it a child or an adult?", "Has the person long or short hair?", ... Should narrow the field very much in 20 questions and likely has found the correct person already. => When having so few physical and mental energy and time left I realized I had to be far more efficient then I was before.
2. From the very severe backfiring I learned I definitely had to take risk management into account. Critically depending on not one single experiment in a long line to cripple me beyond repair was insane. It's like a husband driving his pregnant wife due for delivery to the hospital at the other end of the city. The quickest way to get there is to ignore all traffic signs and lights as they just delay you. That can go well one street crossing, two street crossings,... maybe ten or twenty street crossings. But reality is that it probably will be the quickest way to the hospital, but by an ambulance carrying your pregnant wife and yourself to the nearest ER after you got hit by another vehicle.

Luckily I had sufficient experience with setting up what is called a "design of experiments". This is doing experiments in such way that they get you quick and efficient towards the desired results.
I also learned to make risk management an important/dominant aspect of every research project in order to be able to have high chances of success. That is needed in order to get a new round of financing after the current project ends. Just loosing research funding for a single year could easily mean the end of doing research so I learned to be smart about it.

It just took this CBT/GET disaster to realize that I should use that experience here too. Having sufficient experience with it I managed to get efficient even when having a barely functioning brain. Had I at that time had to learn that from the start I probably never would have been able to do so and for sure not be a the point were I am now.

To be fair, that realization didn't happened in an instant. I more slowly began to realize I had to change my approach and I evolved bit by bit into this direction. At worst my brain wasn't strong enough to make that switch as a single clear well thought choice. It was more the intuitive part of my brain slowly picking up on these old experiences and steering me towards them.