Post Crash Clarity

[cmt12]

Who can relate to this:

You’re following a treatment, but there’s part of you that knows it’s not the answer, part of you that knows it’s simply a cope.

Still, you find yourself continuing to go along with it anyway.. out of fear? To avoid the dread?

Then, you crash and the failure of the treatment becomes undeniable. But you already knew this, at least part of you did. So you beat yourself up over the frustration of wasting time on something you knew wasn’t the solution.

Is this pattern recognizable to you?

 

[wabi-sabi]

I think I did this more early on in illness when I was more desperate and afraid. At this point when something doesn't work I cross it off the list and try something else. There's no point in wasting time and energy on something that isn't working.

I think you're on to something with the avoiding the dread. When you've found one more stupid supplement that just doesn't work- well it's disheartening. you can't avoid the fear and disappointment that comes with a failed treatment. That doesn't just go for us-it goes for people with any chronic illness.

All I can say is don't beat yourself up over trial and error. It won't help, but really, you're doing the best you can to manage. Remember that when treatments fail.

 

[belize44]

Yes, very familiar. I have a cabinet full of supplements that I must look at whenever I am tempted to buy still another one. If I had all the money that I spent on those things it would be a couple hundred, maybe more.

 

[Zebra]

Hi, @cmt12

It's great that you are insightful enough to recognize your patterns, because you can always change how you emotionally respond to failed treatments.

I would say that although I don't beat *myself* up for trying treatments that didn't work out, I do find myself feeling despondent when a reasonable trial period comes to an end with either no improvement, or worse, new symptoms/side effects. My pattern is to stick with something longer than I should because I'm so desperate for it to work out.

You may also consider giving yourself a vacation from trying/striving to get better, and you might be able to come back to it with renewed strength.

 

[wabi-sabi]

You may also consider giving yourself a vacation from trying/striving to get better, and you might be able to come back to it with renewed strength.

I have found this to be very helpful.

Hope is a complicated thing. Sometimes it makes things better, sometimes worse. My main goal at this point is to survive long enough and in good enough health that I will be able to use the real treatments when they finally come. Sometimes survival and improvement are at odds with each other.

 

[linusbert]

Still, you find yourself continuing to go along with it anyway

i dont continue with anything i wasnt convinced it could have a potential benefit.
and try again a year later and hope for different outcome... maybe thats the cope

 

[LINE]

I have found this to be very helpful.

Hope is a complicated thing. Sometimes it makes things better, sometimes worse. My main goal at this point is to survive long enough and in good enough health that I will be able to use the real treatments when they finally come. Sometimes survival and improvement are at odds with each other.

Very good observation! Hope is a double-edged sword.

 

[Mary]

@cmt12 - there's no doubt dealing with this illness is hard, putting it in the best possible terms. Having said that, I keep trying. I can't stop trying to recover, after 26 years. I will take breaks of course and sometimes get very angry and want to throw everything out the window.

But - e.g., most recently I've had an upsurge in energy I have not had for a very long time. I still crash of course with dispiriting regularity, but seem to be able to do more in my allotted activity window (which hasn't changed). And I think this upsurge is due to creatine HCL and/or a new adrenal supplement. I trialed creatine HCL a few years ago and noticed a bit of an increase in energy, so kept it up for many months. And eventually stopped taking it - it all costs so much money, all the supps I take. But if it's responsible for my most recent energy surge, well, I'm going to keep taking it for awhile.

And the adrenal supplement - I've taken adrenal glandulars off and on for many years, mostly Standard Process products, but this one is Adrenergize by Nature's Way and I test verrrry strong for it (muscle testing) so started it about the same time I restarted the creatine. I think one of these, or both together perhaps, have caused my recent upsurge in energy. So I'm going to keep taking both for awhile at least.

And there have been other things I've trialed over the last several months with no apparent benefit. And on it goes --

You’re following a treatment, but there’s part of you that knows it’s not the answer, part of you that knows it’s simply a cope.

The creatine and adrenal glandular are not the "answer" to ME/CFS - but they are (or at least one of them is) definitely helping with symptoms, which I will take. And I don't know of any way to know if something will help or not without trying it.

In 2014 I trialed branched chain amino acids and found to my astonishment that they cut my PEM recovery time by more than half. There was no way to know if the BCAAs would help or not without trying them. And I still take them every day. A few times my supply has gotten low or I've cut back for some reason and usually within a few days, I start to go downhill again, crashing more easily, taking longer to recover - so I keep taking them.

So I don't know of any supplement OR drug which can "cure" ME/CFS - but I have several supplements which have made it more bearable. I still hope for a cure though and will keep trying things as I'm able to -

I think what I'm trying to say is I never know that something is not the "answer" until I've tried it.

 

[hapl808]

Having said that, I keep trying. I can't stop trying to recover, after 26 years. I will take breaks of course and sometimes get very angry and want to throw everything out the window.

I keep trying to improve even small symptoms, but I actually feel a bit better about life now that I've given up any real hope of improving.

For the first 15 years, I struggled and crashed and worked and slowly declined all the while, refusing to acknowledge my limitations or change my life goals. Until my health declined so much that I could no longer do anything I used to do - travel, career, even dinner with friends. Then I had another 5+ years of trying everything just to get back to my previous 'awful' level, which looked great by comparison.

This was an awful time, worrying that I might never improve.

But after 25 years of mostly decline with no upsurge in the last decade, I came to terms with my life being effectively over. That gave me the freedom not to worry and hope and try to make plans. The last 25 years have shown that despite all my effort and research and resourcefulness and discipline, none of that turned out to be meaningful. I can still make it to the bathroom on my own and prepare basic food, which I know is better than some - but that's all I have.

It's made me more at peace accepting it, because the last 10 years in particular were awful as my hope was slowly strangled.

ETA: And just to be clear, this is not asking for an annoying platitude of, "Never give up hope! You never know!" Hopefully people here will at least understand how damaging that can be. That toxic positivity is one of the things that made the last 10-25 years so awful. Instead of acknowledging limitations and reality, I refused to accept those limitations. Except those limitations didn't care about my refusal. So I couldn't process my grief, because everyone around me refused to acknowledge it and I did the same.

 

[wabi-sabi]

I refused to accept those limitations. Except those limitations didn't care about my refusal.

This is such an eloquent way of putting it.

I've been watching a lot of videos about ultrarunning lately. The races are in such beautiful places. But it's odd to think about people voluntarily putting themselves through so much pain and wanting to test their limits. And the limits of some of these athletes are unbelievably high, even for normal healthy people.

I wonder the sorts of demons a person has that running a 100 miles is better than facing them. And when I'm feeling snarky I wonder how they would handle having to just sit with them without being able to run away. They all talk about how you learn something about yourself when pushing yourself to extremes. I wonder what they would learn if they just had to sit with themselves.

I think wrestling with the grief and despair of having an incurable illness is a more profound process than any athletic competition.

 

[hapl808]

I wonder the sorts of demons a person has that running a 100 miles is better than facing them. And when I'm feeling snarky I wonder how they would handle having to just sit with them without being able to run away. They all talk about how you learn something about yourself when pushing yourself to extremes. I wonder what they would learn if they just had to sit with themselves.

I think wrestling with the grief and despair of having an incurable illness is a more profound process than any athletic competition.

I loved exercise and working out when I was healthier - even if I wasn't totally healthy. I didn't do ultrarunning, but I went to the gym 3-5 days per week and loved it. I still occasionally watch training videos, which is partially for enjoyment and partially for self flagellation I suppose.

However, I don't think pushing yourself to extremes comes close to what you learn from having an incurable illness. One is an enjoyable way to get your endorphins going and see how you deal with (very minor) adversity. The other is an existential crisis with no endorphins to help you and dealing with (very major) adversity. I agree there's no comparison, but they could never understand until they experience it.

 

[linusbert]

but I went to the gym 3-5 days per week and loved it

me too, but only 1-3x a week , and usually heading directly for sauna.
weirdly that was one of the things i noticed years prior my crash, usually when ive gotten into sauna and did the cold bath, and i lie in the chairs afterwards, my skin felt like steel and a warmth burning from the inside, felt really good, always gave me that superman feeling.
but then i did get the cold skin feeling, and also a inner cold like getting a flu or something.

 

[hapl808]

weirdly that was one of the things i noticed years prior my crash, usually when ive gotten into sauna and did the cold bath, and i lie in the chairs afterwards, my skin felt like steel and a warmth burning from the inside, felt really good, always gave me that superman feeling.
but then i did get the cold skin feeling, and also a inner cold like getting a flu or something.

Before getting sick, working out made me feel great. I didn't do sauna at all as even then I found it draining - same with cardio. But lifting heavy made me feel great.

After I got sick (possibly from the Hep B vaccine, possibly from some food borne illness while traveling), the superman feeling disappeared and I just felt awful from working out - and didn't have the mood boost for the next days. My workouts went from 60-90 mins down to 30 mins, then 20 mins, then had to stop entirely.

 

[Mary]

@hapl808 (and whoever is interested) - I don't think I would have been able to make the progress that I have without muscle testing. No, I don't have a clinical trial to back it up but I do have my experience which has been consistently positive with MT.

e.g. - I used to have near-constant detox reactions to various foods and supplements. The reaction was a combination of feeling poisoned - digestion was off, extra tired (yes, it was possible to get even more tired!), woozy, trouble thinking. Every week or so I was reacting to something, including cayenne pepper, apple cider vinegar, anything that was touted as having "cleansing" properties affected me badly. Glycine hit me especially hard, like a truck - but MT done by my chiropractor showed that glycine was actually good for me, but in very small doses. So based on that I kept taking it, starting with a very small dose that I could tolerate, and gradually increasing it over a period of 6 months, by the end of which time I no longer had a detox reaction to glycine, or hardly anything else. I still take glycine at night to help with sleep.

So I still deal with PEM and screwed up immune system and sleep problems, but I no longer detox routinely. And without MT, I would not have been able to do this.

It's helped with several other things, straightened out several digestive problems and more. You can learn how to do it yourself but I recommend that anyone thinking of trying it first get it done by a competent practitioner, very often a chiropractor. It's not quite as simple as it can look, and one's attitude can actually affect the results.

ETA: MT has helped determine what is good for me or not, without having to trial it first, and also how much of something to take. It is a little more complicated than that but it's been invaluable to me. Cannot imagine trying to navigate this illness without it!

 

[hapl808]

ETA: MT has helped determine what is good for me or not, without having to trial it first, and also how much of something to take. It is a little more complicated than that but it's been invaluable to me. Cannot imagine trying to navigate this illness without it!

I tried muscle testing - had two chiropractors do it for me. Even when they were doing it and I was bringing in everything from supplements to footwear, I didn't find any benefit.

I try to be open minded even though it seemed like pseudo-science, but the main issue is it just didn't do anything for me. I found their non-force 'adjustments' slightly helpful, but honestly not sure it was even worth the energy expenditure of going to the appointments.

 

[Florida Guy]

Hope is a cruel emotion. It tells you everything will be alright, just try something more and maybe you will be better again. But it doesn’t work, your hopes are dashed and you feel bad. But then something else comes along and once more your hopes go to the moon, and your high hopes once again crash on the rocks below. And repeat.

When I quit hoping I felt better. I kept on making plans, the difference was I was not saying to myself this has to work or else. I simply realized most things don’t work out so if one thing does not work, that is to be expected and time to make new plans and try something else

Don’t quit trying to do things but don’t get emotionally involved in the result. In other words keep on trying things without hoping, without putting emotion into it. I know that’s hard especially when the effort is difficult and perhaps costly. Don’t expect anything just keep plugging away and one day you might have a very pleasant surprise

 

[hapl808]

When I quit hoping I felt better. I kept on making plans, the difference was I was not saying to myself this has to work or else. I simply realized most things don’t work out so if one thing does not work, that is to be expected and time to make new plans and try something else

Don’t quit trying to do things but don’t get emotionally involved in the result. In other words keep on trying things without hoping, without putting emotion into it. I know that’s hard especially when the effort is difficult and perhaps costly. Don’t expect anything just keep plugging away and one day you might have a very pleasant surprise

This sums it up for me. When I quit hoping, I felt better. I keep trying stuff but I don't make plans for "when I get better." I put emotion into very little. I don't have the energy for much emotion so I need to be careful how I spend it.

 

[Florida Guy]

This sums it up for me. When I quit hoping, I felt better. I keep trying stuff but I don't make plans for "when I get better." I put emotion into very little. I don't have the energy for much emotion so I need to be careful how I spend it.

Thats what I'm trying to do as well. By not hoping it doesn't mean there aren't things we want. It means we work toward a goal to get things we need, we just dont put a lot of emotion into it. It means doing all the things we are supposed to do but not expecting a reward. That way any good thing that happens is a bonus.

Que sera sera

 

[ilivewithcfs]

I feel like hope is toxic in my situation. I try not to hope. Instead I try my best to practice radical acceptance. I unconditionally accept everything that happens to me. It's likely, that I will never recover and I'll spend the rest of my miserable life alone in a hospital somewhere, and I accept that. I still do my best to get better, I constantly research and try various treatments, I just try not to hope too much to avoid this toxic emotional rollercoaster.

 

[hapl808]

I feel like hope is toxic in my situation. I try not to hope. Instead I try my best to practice radical acceptance. I unconditionally accept everything that happens to me. It's likely, that I will never recover and I'll spend the rest of my miserable life alone in a hospital somewhere, and I accept that. I still do my best to get better, I constantly research and try various treatments, I just try not to hope too much to avoid this toxic emotional rollercoaster.

This is exactly what I do. I spend every day trying to get better, but my belief is that I will only get worse and my future will be awful. My mood is better since accepting that no help is coming.

I feel like people who don't understand this have likely had years of improvement or haven't been sick for as long. It's probably more comprehensible to anyone with years or decades of consistent worsening.