How do you avoid getting traumatised by your illness?

xebex

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On a more positive note I have found EFT to be very helpful in dealing with the emotions surrounding this illness, it reduces the stress load and it it has increased my function. I’ve also read Pema Chödrön and Elkhart Tolle and both offers some valuable ways of seeing life that, and this is coming from an atheist lol, I wouldn't want to do without. I have also discovered that the mindfullness we all learn about on apps and courses isn’t really the mindfulness that actually helps, it takes a long time to learn mindfulness but once you do it can help too.
 
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For those on this thread who dont quite know what EFT is, and I was one of them, here's a definition .... @xebex, please correct anything in the following that isn't correct, yes?

"Emotional freedom technique (EFT) is an alternative treatment for physical pain and emotional distress. It's also referred to as tapping or psychological acupressure. People who use this technique believe
tapping the body can create a balance in your energy system and treat pain."
 

xebex

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Yes that’s about right! I avoided it for about a year thinking it was a load of woo until desperation forced me to try. It has been very helpful among other things that will take an essay to write about.
 
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It is very difficult to handle my new situation. It's only been six months and I'm not even sure if I have ME after Covid. I do have POTS and some other physical symptoms and it limits me very much. I need help dealing with this mentally, but I do not know if I have the energy to see a psychologist. Antidepressant medications seem to be something to be avoided, but I can not do this by myself. I see how much it affects my mother too and I feel useless.
 
What helped me a lot is Somatic Experiencing. I started it because of another trauma, but eventually it taught me how to deal with feelings and emotions. How you "swim" with them, at least that's how it feels to me. And how they always change and evolve.
I tried meditation before and there are a few similarities, but it is my impression that SE is more tangible.
 
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It's only been six months and I'm not even sure if I have ME after Covid
The symptoms and effects are very similar. Would it be easier if, at least for now, you go with the working hypothesis that you do have ME, which will relieve some of the stress of uncertainty and give you a more specific focus?
I need help dealing with this mentally, but I do not know if I have the energy to see a psychologist.
From my own experience, as well as what Ive read in these threads, I think the last thing you might want to do right now is go to a psychologist, or worse, a psychiatrist. The potential for more confusion and emotionally painful medical gaslighting is pretty high.
Antidepressant medications seem to be something to be avoided, but I can not do this by myself.
Again, speaking from my own experience and a lot of what I've read in these threads, they're a singularly bad idea. Most of the Drs, prescribing them, including the psychs, have no real idea of their complete mechanism of action, or what they're actually doing to the human brain and CNS, and they take a sort of scattershot approach. If anti-d #1 doesnt work, then its on to anti-d #2. Then #3. Then #4 , and so on and so on, along with add-ons like Gabapetin and Xanax.


It;s a rough and rocky road to come back from, and easier to avoid than to repair after the fact.
I see how much it affects my mother too and I feel useless.
The guilt that clings to this illness like a miasmic sulphuric cloud is one of its more emotionally painful aspects.


Spend some time browsing thru the many, many threads here, where there's a lot of experience and practical input, and the ability to dig into things that have helped others, and might help you. Just remember that another annoying aspect of ME is that there definitely ISN'T a one-size-fits-all cure. It's going to involve a lot of reading, researching, and experimenting to find what works for you, but many of us have, and you can too.

And know that you're not alone. We're all in the same place, regardless of the boat that brought us here, and I'm seeing more and more COVID patients coming to this forum for the same reason that you're here.

Along with researching, there are a lot of entertaining and pleasantly distracting threads in the Community Lounge section, and digging into those will give you a place to hang out get to know peolpe, and a sense of camaraderie and community, and help combat the inevitable alone-ness and isolation that's a hallmark of ME for almost all of us.

I'll come back with a list of links to a few of them, but right now, I'm running on fumes.

Chin up !!! Things will get better, and you're in the right place, at the right time, for the right reasons :thumbsup::thumbsup::thumbsup: :hug: ....
 
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xebex

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What helped me a lot is Somatic Experiencing. I started it because of another trauma, but eventually it taught me how to deal with feelings and emotions. How you "swim" with them, at least that's how it feels to me. And how they always change and evolve.
I tried meditation before and there are a few similarities, but it is my impression that SE is more tangible.
yes I think I “made up” a kind of somatic experiencing on my own after I read how to deal with a panic attack in that you almost invite the fear in and then ride it like a wave. I never had a panic attack after that again and I now deal with my emotions and even physical pain this way and it’s very helpful.
 
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Hi again, @RobeAnJa ...

As promised, here's a list of several Community Lounge threads that offer welcome distraction after trolling through endless research papers and threads, and a place to put up your feet, unwind, get to know other members, and just let go of the stress and fear and loneliness and feeling of singularity that this nasty little heel-nipper of an illness drags along with it.

LINK TO ‘ANIMAL NEWS OF THE DAY’,
https://forums.phoenixrising.me/threads/animal-news-of-today.62813/
started by @RebeccaRe , all kinds of animals are welcome, and they can bring their friends if they’d like. Some posts are heart-warming, some are heart-tugging, some are hiiii-larious, some are thought provoking. A great place to lose yourself for a little while and remind ourselves that there are wondrous things out there, and that we can still enjoy them !!!

LINK TO “USE THE LAST TWO LETTERS OF THE PREVIOUS WORD TO FORM A NEW WORD’
https://forums.phoenixrising.me/thr...s-word-to-form-a-new-word.78032/#post-2236004
Keep the wheels a-turnin’, doncha’ know …. this one is shameless self-promotion, I started it and am hoping that it‘s as diverting for ya’ll as it is for me, just beware the Thread Gnomes …..



LINK TO ‘WELCOME TO MY WEIRD, Y’ALL …
https://forums.phoenixrising.me/threads/welcome-to-my-weird-yall.81407/
Another shameless self-serving link, since I created the thread for a place for all of us to get away and enjoy wacky nonsense in a peaceful, non-threatening atmosphere .... and there's always the Thread Gnomes, if you get bored .... wacky little sodden forest clowns that they be ....


LINK TO PATJ’s ‘ QUOTE OF THE DAY’:
Old and new wit and wisdom and even serendipitous guidance, and your contributions are welcome.
https://forums.phoenixrising.me/index.php?threads/quote-of-the-day.548/page-96#post-1025008


LINK TO "WTF !!! SILLY, STUPID THINGS FROM THE INTERNET MACHINE THAT MADE ME SMILE, LAUGH, OR SHAKE MY HEAD IN DISBELIEF …POST YOUR FAVORITES …."
Some of the gobsmacking, ridiculous, funny and sometimes funny-because-they’re-true things we stumble across on the internet machine that invariably make us feel better about our own cognitive lapses …
https://forums.phoenixrising.me/thr...-head-in-disbelief-post-your-favorites.80551/


LINK TO ‘BED ART’
https://forums.phoenixrising.me/threads/bed-art.76178/
Charming, beguiling art, started by @Hufsamor and centered on the place where so many of us spend more time than we’d like. It never fails to soothe me, and increase a sense of hope and possibility. Do feel free to add your own take on sleep and beds and rest and peace ....


LINK TO ‘EXCELLENT MUSIC’
every kind of music you can possibly dream of, assuming you can sleep and dream, and do feel free to post your own choices here as well …. this goes for all the links I’ve posted here: contributions welcome, don’t be shy
https://forums.phoenixrising.me/threads/excellent-music.48381/page-88#post-2189532


LINK TO ‘WHAT ARE YOU GRATEFUL FOR TODAY’:
An excellent place to remind ourselves of all, or any, of the good things we still have in our lives, even if complete or even partial recovery isn’t among them yet
https://forums.phoenixrising.me/ind...grateful-for-today.56762/page-47#post-1024989


LINK TO ‘POST YOUR DAILY MOAN HERE’:
https://forums.phoenixrising.me/ind...ur-daily-moan-here.55907/page-86#post-1024176
For those days when you need a place to vent, and don’t want to over-burden friends and family with stuff they don’t entirely understand and have already heard a hundred times before.


LINK TO A INTERESTING SPIRITUALITY THREAD, ‘SOMETHING TO PONDER’,
started by @jesse’s mom, from psychology to the mystical to mantras to astrology to Buddhism to Maslow and beyond .... needs some new blood, why not yours (that sounds waaaay more ghoulish than I intended) ……
https://forums.phoenixrising.me/threads/something-to-ponder.75478/


LINK TO ‘I CAN WRITE THINGS AND YOU CAN TOO’
https://forums.phoenixrising.me/ind...gs-and-you-can-too.62189/page-17#post-10272381
An interesting place to just hang out and kick back, or write about anything that crosses our mind, from the frivolous to the serious to the wacky and strange, at the generous invitation of @Howard ....


LINK TO ‘BOB ROSS AND OTHER SOOTHING THINGS'
https://forums.phoenixrising.me/threads/bob-ross-and-other-things-that-soothe.78919/
This thread was started almost by accident. If reducing stress is your aim, this is a great place to start. One of my favorites right now is the rabbit, enthusiastically working its way thru a largish slice of watermelon, but there's lots of other videos and recommendations that are equally effective at the gentle art of soothing the savage breast.


INTRO TO POSTING ON PHOENIX RISING
And here’s a stellar video on various aspects of posting on the site, provided to us thru the industry and creativity of Hip. You may have already received a copy in your intro package, but thought I’d include it just in case.

 
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@RobeAnJa
PS .... did @PatJ post a copy of his incredibly comprehensive, beautifully organized list of links to resources for every aspect of ME .... from diagnosing to treating to what to avoid to how to train your Dr ?

If not, I'm sure he'll be following up with that shortly, but I'm guessing that he already did ... only posting this just in case ....
 

PatJ

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@RobeAnJa
PS .... did @PatJ post a copy of his incredibly comprehensive, beautifully organized list of links to resources for every aspect of ME .... from diagnosing to treating to what to avoid to how to train your Dr ?

If not, I'm sure he'll be following up with that shortly, but I'm guessing that he already did ... only posting this just in case ....
Thanks for the tag. I posted a copy of my resource list in RobeAnja's intro thread when they first posted, if that's what you meant (I'm too brainfogged at the moment to read back in this thread for context.)
 

leokitten

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My personal experience is that avoiding getting traumatized somewhat depends on things that are out of your control. For example,

Having a supportive family, spouse, friends, others who see and truly believe this illness is very real and physiological helps a great deal.

How quickly or not your severity has gotten worse after falling ill can have a profound effect on being traumatized. If your severity level isn’t too severe or you’ve only slowly deteriorated over the years after falling ill then this gives you enough time to go through the worst psychological phase of this illness where you come to terms that this is going to likely be permanent.

This took me years of fighting the illness, trying every treatment under the sun, and fighting to keep my old life at all costs before I slowly came to terms with things in a positive way. If I’d deteriorated much faster before I could go through this in the time I needed then for sure I could’ve become traumatized.
 

Mouse girl

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I was severely traumatized by all the losses that came with this illness. I didn't really have much support but had bits and pieces. It was brutal. Got very ill at 25 and had to try and figure out how I would deal. It took many many years to even get to a place where i could find some joy but still always hits at times, more loss, more things I'm left out on or another friend who chooses not to understand or care. I think it depends on how hard things are for people. For people who have loving supportive family members and enough $ to get by, well, it's going to be very different than those who are worried about being homeless and how we would manage that and feel in all alone. Things got alot better for me, not really physically, but I found some peace and happy times just within myself and the few things I could do. But, the last few years, things have been super difficult with way too much loss, strain, stress and change. I am traumatized all over again. Just with this seamingly simple idea of getting a new used car. I had a 22 year old car I loved but had little things not working and I have the means now to get a new used one but the newer cars are making me horrifically ill. I'm horrififed because I live alone, I have no one to help me and I need to drive, plus it was my one freedom, escape and joy to drive somewhere lovely, like the beach. I 'm terrified that newer cars might not work for me and I turned in my super old one and hard to find old ones that work like that. I feel stupid and super terrified as I need to move again soon and do sooooo much more than I am capable of on a good day when I had my 22 year old car. It's hard man. just got to try and be kind to yourself to get through it, computer dying, got to go, sending love
 

2Cor.12:19

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I was severely traumatized by all the losses that came with this illness. I didn't really have much support but had bits and pieces. It was brutal. Got very ill at 25 and had to try and figure out how I would deal. It took many many years to even get to a place where i could find some joy but still always hits at times, more loss, more things I'm left out on or another friend who chooses not to understand or care. I think it depends on how hard things are for people. For people who have loving supportive family members and enough $ to get by, well, it's going to be very different than those who are worried about being homeless and how we would manage that and feel in all alone. Things got alot better for me, not really physically, but I found some peace and happy times just within myself and the few things I could do. But, the last few years, things have been super difficult with way too much loss, strain, stress and change. I am traumatized all over again. Just with this seamingly simple idea of getting a new used car. I had a 22 year old car I loved but had little things not working and I have the means now to get a new used one but the newer cars are making me horrifically ill. I'm horrififed because I live alone, I have no one to help me and I need to drive, plus it was my one freedom, escape and joy to drive somewhere lovely, like the beach. I 'm terrified that newer cars might not work for me and I turned in my super old one and hard to find old ones that work like that. I feel stupid and super terrified as I need to move again soon and do sooooo much more than I am capable of on a good day when I had my 22 year old car. It's hard man. just got to try and be kind to yourself to get through it, computer dying, got to go, sending love
@Mouse girl I’m so sorry 😐 for all you’ve been through. Going it completely alone has got to be incredibly hard. I’m holding a good thought and saying a prayer for you with the new move and car. Please keep us posted. 🙏🏻❤️
 

Mouse girl

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thank you @2Cor.12:19 very kind of you. lovely.

@space8 , how are you doing? I didn't see a reponse from you after the first post. could have missed it, being on the computer is hard for me. it is very truamatizing. i found different things helped at different time, different ideas or books. best thing you can do is just be kind to yourself. i have trouble with that myself when times get really hard. but the way you talk to yourself in your head can help you feel a bit better. i guess everyone is different and maybe people with different backgrounds than me aren't hard on themselves so I'm not sure how trauma effects them. trauma is real. even people with serious illlness that is cured or in remission can have some serious trauma that they find troubling, like it hits after they are well and "should be feeling happy". So with us, this ongoing thing, and how it effects every aspect of life, it really is too much. so feeling beaten down, stressed, depressed, overwhelmed, anxious just comes as a natural response. sometimes, when i'm having too hard of a time, just watching mindless tv or nice movies is really the only thing that helps. when it's too much, i need to zone out a bit rather than trying to find things to do that i love because i can't really feel them but getting a bit lost in shows can give me a bit of a break or respite. just to offer something that isn't spiritual or inspiring. sometimes some tv can be good.
 
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@Mouse girl , @space8
i need to zone out a bit rather than trying to find things to do that i love because i can't really feel them but getting a bit lost in shows can give me a bit of a break or respite. just to offer something that isn't spiritual or inspiring. sometimes some tv can be good.
I was in the same boat for several ears. I just couldnt cope with anything but the absolutely necessary, and that took everythig I had, and then some .... it was a trying time, and 40 or 50 other people's future depended on my ability to do the necessary, possibly more if you count ancillary family memebers, who would also have been affected.


It was a miserable time.

I couldn't escape into books, which had always been my favrotie route into another world, because I just kept reading the same paragraph over and over and over again, with no better retention or comprehension the 15th time than the 1st, and that in itself was just too depressing ....

What saved me was burying myslef in, first, good TV, then OK TV, then I moved thru every movie at Blockbuster, and when that closed, everything at Netflix going back to the late 1920's. It wa quite the education.

That escape from reality is part of what saved me.

People may think that trivial, but sometimes when you can't go the "The Only Way Out Is Thru" route, escapism is your best friend.

Find something that takes you out of yourself, whatever that may be. Playing for time is one of the easier weapons we have at our disposal ....
 
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On a more positive note I have found EFT to be very helpful in dealing with the emotions surrounding this illness, it reduces the stress load and it it has increased my function
Heart Math is another interesting- technique- part of it involves simply breathing thru the heart.. it the can contribute to improved brain-heart coordination, and has stress reducing qualities.

This type of thing:

https://www.heartmath.org/articles-of-the-heart/the-math-of-heartmath/heart-focused-breathing/