Healing may not be linear
One of the important lessons I've learned is that healing often resembles a winding road rather than a straight path. While it can be highly individual, there definitely can be ups and downs - even with long periods of improvement followed by setbacks. It’s crucial to become aware of the possibility of this non-linear trajectory and to prepare a good plan for them.
A support network. Not isolating yourself. Admitting how sick you are
It might sound trivial, but it is important that people around you (at least some) know how sick you are. Unfortunately, one needs to consider and realistically plan for what to do if the condition worsens. This is something I severely underestimated in the past. When my condition got much, much worse over the course of days and weeks, I was caught off guard, having no good and practically executable plan in place. Meanwhile, pretty much nobody knew or understood how sick I truly was. At the same time, due to my symptoms including brain fog getting worse and being in the state of just barely surviving through days, I became not able to put together a next course of action and especially not able to act on it anymore. It was also incredibly challenging to explain and communicate what was happening to me to others, whether to family or doctors.
Don't get lost in details and fancy terms
While navigating chronic illness, it's easy to become consumed by minor symptoms, symptom fluctuation or minor test results parameters. In some cases, to be very attentive can be beneficial. It can contribute to solving the puzzle of what is wrong, what is triggering the symptoms and eventually help with pursuing the correct treatment. However sometimes focusing too closely on every little detail can lead to unnecessary anxiety, frustration and wasting one's energy. Especially when the basic outlines of the problem have already been established and the necessary diagnostic tests for serious deadly illnesses (in the common sense of the word) came negative.
Also there is another problematic area, one of asking questions that in the end don't lead anywhere, or which are obsessed with terminology or sorting into categories - even when it doesn't contribute to anything. One needs to keep in mind that the current "mainstream" medical terminology is just what it is - it is not complete or all encompassing and its description of symptoms relationships, more complex diagnoses, overall body condition or let's say microbiome condition is limited. When one forgets about that, their thinking might become dictated by the terminology and categorization itself, while missing links and insight that comes from going beyond this terminology.
There are also questions which focus on very specific parameters or processes in the body that may be interesting, but which at the end of the day can't even be addressed in isolation.
Or the frequent questions along the lines of (a bit exaggerated of course): "Can my symptom A occur with a frequency B, during C, after E, in location P when my friend with the same diagnosis name says it can only R while his doctor said it should P?"
An average list of symptoms or a short article for the specific diagnosis (or let's call it a diagnostic bucket) found after 5 seconds of googling may not (better said: it very likely won't) capture the complexity of the given diagnosis lumped into such diagnostic name by the medical system. Especially, it does not capture all the possible ways in which e.g. dysbiotic microbiome can manifest itself. Neither what happens when your individual physiology, circumstances, other conditions or diet comes into play.
So, all in all, even if diving deep is sometimes necessary, it is good to get back to surface afterwards and maintain a broader perspective. The focus on the overall picture and trends instead of nitpicking and splitting unimportant hairs can often go a longer way.
Is this helping me?
An simple approach (which however may lead to tricky dillemas!) - go over everything you do, eat, drink, think about, people or even doctors you visit and ask yourself a simple question:
Is this helping with my healing?
Or conversely: Isn't this damaging to my healing effort? If this hasn't helped me despite me having put a lot of energy and time in it, does it still make sense?
Am I putting enough effort into my healing? Am I not putting too much effort in things that are just hampering it or from which the benefits are just too small?
Examine your situation from a larger perspective
Consider your life as a whole, including your emotional, mental, and social well-being, your enviroment and circumstances. Reflecting on how different aspects of your life currently interact can provide valuable insights into your healing process.
It may also help to analyse your past life, psychology, behavior, relationships. Has there been any psychological factors, which contributed to you falling ill? What can be done to avoid repeating such behavior, thinking patterns, situations? What lessons can be taken?
The herx is real
"Herxheimer", "herx" or "die-off" reaction occurs when toxins and various metabolites (but other mechanisms can be at play) are released as pathogens are dying off in body, leading to temporary worsening of symptoms.
When a protective biofilm containing microbes (e.g. bacteria or yeast) breaks down, it can release these microbes into the gut. When the integrity of these microbes becomes compromised, various substances may be released, which triggers an immune system inflammatory response, for example, lipopolysaccharide (LPS) released from bacteria or beta-glucans and mycotoxins from yeast (such as candida). As a side note, these microbes can produce problem-causing substances even without their integrity being compromised or them dying, so this reaction can be understood as a disruption of the prior balance, disturbing their comfort so to say.
This can lead to diverse symptoms including worsening fatigue, joint and muscle aches, fever, chills, headache, fast heart rate, a sense of anxiety, depression, tinnitus or skin manifestations.
Practically, herx means that a new treatment protocol can make you feel worse before you start to feel better. Becoming aware of the existence of herx and understanding that this reaction can be a sign of progress can help you stay hopeful and in control during difficult times.
In healthy people, detoxification pathways in their bodies and gut lining (likely) function as intended and thus, should be able to handle such a reaction reasonably well. However, in people who have been suffering from severe, long lasting gut problems, possibly having a high pathogen/biofilm load and an increased permeability of their gut lining, the chances are that a comparable pathogen die-off may lead to a more severe and longer lasting herx reaction.
In broader sense, even feeling worse on a new diet can be understood as a form of a herx - some microbes are getting starved and may die while others thrive, a complex battle takes place with various substances being released, with a complex interplay between the immune and neural system of the host and the changing microbiome.
On the other hand, while herx is real, it is important to add that not all negative reactions are necessarily herx. Feeling worse, particularly after introducing a new treatment can be caused by the treatment substance itself or in some cases, an allergic reaction to it. The distinction can be tricky to make. In any case, a worsening lasting for too long should raise a serious question if it should not be attributed to worsening as such instead of "hoping" it is a herx reaction.
Listen to your body. Don't get gaslighted
First, don't try to push through anything! Respect the limits of your body and your condition. Otherwise you can end up making yourself a lot worse. Simple as that. I know something about that.
Second, if there is a problem, a symptom that you absolutely know is there and ruining your normal life - and you know it's there not because of your bad mental state, stress, overreacting or whatever similar - and your physician is trying to belittle it or convince you that what you are thinking is wrong, don't allow them to do that. Yes, of course, you can give them a benefit of doubt, a couple of opportunities to start to understand and take you seriously. However...
If you see it leads nowhere, don't hesitate. If it's at least a bit possible, part your ways with the physician who is not capable of understanding you, who is gaslighting you or downplaying your account. Find someone else. Better soon than later. Failure to do so could end up badly once they lose their patience with you or when you get worse and are still stuck with the same person who does not understand or acknowledge your problems.
The same applies to your friends, family or anyone else. But of course, the situation in these cases is more complex and the solution depends on various factors.
Don't expect understanding or help where none is to be found
Relaxing to heal?
There is two sides to this. If you have reached a stage where you are seriously sick and your biochemistry, immunity, microbiome and body as such is malfunctioning just too severely, it might be the case that even if you tried to practice yoga and meditation so to say "24/7", it would not make your problems improve. I know that myself, having spent some time in the past practicing yoga and relaxation techniques - which didn't help my symptoms and in the end only lead to my greater frustration. This result was also related to me not having enough knowledge about what other methods to follow along it to target the problems from more sides. I just desperately hoped that relaxing here and there could make my flawed body functioning switch itself back to a certain better level. Later when my condition got worse, any kind of relaxing was impossible. My body, being in a constant tense, wired but tired (and what not else) state would simply not allow it no matter how hard I tried.
The recommendation of "relaxing and improving thanks to it" can therefore vary in its meaningfulness. It really depends on the specific, individual condition. In certain severe cases, it may come across as an ignorant advice regardless of how well-meant it is, because the person just can't relax due to their symptoms.
Forcing yourself to relax despite it clearly not helping or it not being possible at all just because people around you are constantly telling you that will surely improve if you just relax - may lead to a a lot of frustration, wasted time and energy - in the situation when that energy should better be spent exploring other ways to address the symptoms.
But, now comes the other part - if one has the ability - or regains the ability - to pursue any form of sensible relaxation, be it yoga, meditation, massages, tai chi, music therapy, they should definitely take that opportunity. Getting out of the fight-or-flight response may allow the body to restore its healing capacities and can play an important role in achieving better health. Relaxation techniques can serve as a supportive foundation, enhancing the effectiveness of other elements in a broader treatment plan.