My hardest struggle right now…

[JanAtheCPA]

Yes, here's a posting about it, Mike: https://www.tmswiki.org/forum/threads/what-i-would-change.24382/page-2#post-127257 (Day 20 - What I would change)

I would actually recommend reading that entire thread from start to finish. It's a profound discussion (with impactful input from 4-years-ago @Baseball65) which emphasizes the continuing truth that there is no one answer that works for everyone, and there is not even one answer that works consistently for any one individual at all times.

@Diana-M, thank you for this thread (and many others). I'm suddenly wondering if your unconscious brain might still be sneakily inserting the hope that you will someday come across the one true answer. This alone can exert a subtle but powerful drag on your progress towards a much more flexible openness to acceptance. You've received such great advice from everyone about small shifts you can make.

Reading that 2021 thread myself, I had this sudden visualization of each of us on a carousel that is constantly changing speeds and letting other people on and off while we're constantly changing our seats and experiencing a different ride on each revolution. We carry the memories of each past ride on each new one, which means that each new moment is part of the greater compilation and continuation of all past moments. And I realized that living our lives in the present means accepting that it's not going to be possible to fully and firmly grasp or comprehend or even make sense of everything that came before, because "what came before" changes every second and influences what came before that and so on.

It's as if the constant grasping for stability and certainty and meaning is what can keep us stuck, rather than letting go and just accepting the latest iteration of the experience, which is the present. The first key to Acceptance is to be mindful of the constant stream of unconscious lurking thoughts and pressures having to do with the grasping. The second key is to acknowledge them and quickly deal with them without obsessing. If they are not serving you, you reject them. (IOW: Stop!) Then move on.

Give this stuff a lot of time

John knows whereof he speaks. His introduction/Success Story is a must-read.

noticing the constant "woe me", and I just couldn't picture myself being a part of that (I hope no one takes offense to this, it's not my intention).

You are describing victimhood, @HealingMe, and victimhood is anathema to TMS recovery. Can't be done. And don't apologize! Always double-check your people-pleasing tendencies, and be willing to tell it like it is for you. You can't please everyone, and so be it. Goodness knows, I couldn't have survived here this long without accepting that my point of view will rub some people the wrong way (which includes calling out victimhood if I see it). There are plenty of other points of view that they can turn to, because - did I mention? There is no one way!

Great discussion.

 

[Diana-M]

I'm suddenly wondering if your unconscious brain might still be sneakily inserting the hope that you will someday come across the one true answer. This alone can exert a subtle but powerful drag on your progress towards a much more flexible openness to acceptance. You've received such great advice from everyone about small shifts you can make.

I certainly hope I’m not wishing that! But I’ll look hard to see if I am. I do greatly appreciate everyone’s advice!

 

[TrustIt]

Thank you, @BloodMoon , @mikeinlondon and @Cactusflower ! I am going to be limiting my forum time— making a schedule— And sticking to it!

There seem to be two types of people on this forum. Some people have TMS, but they are able to live a lot easier. They hold down a job, they leave the house, they can move around. Some of us are so much more limited physically than that, and it seems overwhelming to “Live your Life.” But this discussion proves that to be untrue. You can live your life on your level— in five minute increments— slowly increasing what you do, until you’re back on track!

Here we go —let’s do it!!!

Yes! That's a good point to make about different people with different levels of pain. Easy to say "just ignore the symptoms and live your life." I simply can't do much physically. I'm so grateful I don't have to work with all this going on. In fact, I couldn't.
I have started doing small things and I mean really small. The only thing I can even think of that brings me any Joy it's picking up my guitar. I've lost my voice to these symptoms which is something that's made me angry. I have a wonderful husband who does everything around the house that involves any labor. I try to hold up my end of the partnership with all the paperwork, anything I can do sitting at my computer. Some guilt that so much is put on him. So I've mentioned anger and guilt so far. Just don't know how to change since recognizing it doesn't seem to be helping.

 

[Diana-M]

Yes! That's a good point to make about different people with different levels of pain. Easy to say "just ignore the symptoms and live your life." I simply can't do much physically. I'm so grateful I don't have to work with all this going on. In fact, I couldn't.
I have started doing small things and I mean really small. The only thing I can even think of that brings me any Joy it's picking up my guitar. I've lost my voice to these symptoms which is something that's made me angry. I have a wonderful husband who does everything around the house that involves any labor. I try to hold up my end of the partnership with all the paperwork, anything I can do sitting at my computer. Some guilt that so much is put on him. So I've mentioned anger and guilt so far. Just don't know how to change since recognizing it doesn't seem to be helping.

@TrustIt! Oh my gosh, I relate. My husband does everything and I feel terrible about it. I try and remind myself that I didn’t ask for this, and I’d do the same for him. (In fact, I did quite a bit for years.) But still, I hate being dependent. Just hate it! And I guess this is what God wants me to learn. How to let go and how to have humility. Any time I get really discouraged, I remind myself this isn’t going to last forever.

Good for you on the little things you’re doing. Recently, I’ve started unloading and loading the dishwasher. It’s like climbing Mount Everest! But lucky me, I get to do something this hard every day. Maybe my self-discipline will be like steel when this all is over. Last night I had terrible symptoms in the night. Maybe because I climbed Mt. Everest right before bed. Might have to watch that next time.

Can you still play the guitar? Oh gosh yes-play with all your heart. Don’t think about your voice (what you don’t have). Think about what you have -guitar! I’m a writer who can’t type anymore. But I can still write longhand (and I use audio on my phone for the forum.) I was resentful at first. I lost all my ability to work and do what I love. But have I really? Who says longhand is worse? Maybe it’s forcing me to slow down a little. Think more while I write. I’m actually enjoying it more. Maybe you’ll learn something new on your guitar? Maybe you could even get a new guitar?!

I understand your fear, frustration, anger, guilt and hopelessness. I sure do! On a daily basis. You’re not alone! But I have friends on this forum who were bedbound and now they’re thriving. We can do it too. You also have to do some internal work. Journaling etc like what’s taught in the Structured Educational Program. Fight your way out. Don’t give up!

 

[Cactusflower]

"Maybe because I climbed Mt. Everest right before bed. Might have to watch that next time."

Dr. Sarno reminds us to THINK PSYCHOLOGICAL
"My husband does everything and I feel terrible about it." - this is thinking psychological and it's a great topic for journaling. Do you REALLY feel terrible about it? Or is there some part of you who thinks it's time someone took care of YOU for a change?

Part of TMS is owning that the "good" thoughts we have might be tied to things we also judge are pretty rotten. And it's OK. It's normal! Especially for someone who has always done for everyone else.

 

[Diana-M]

"Maybe because I climbed Mt. Everest right before bed. Might have to watch that next time."

Dr. Sarno reminds us to THINK PSYCHOLOGICAL
"My husband does everything and I feel terrible about it." - this is thinking psychological and it's a great topic for journaling. Do you REALLY feel terrible about it? Or is there some part of you who thinks it's time someone took care of YOU for a change?

Part of TMS is owning that the "good" thoughts we have might be tied to things we also judge are pretty rotten. And it's OK. It's normal! Especially for someone who has always done for everyone else.

Ok, this evoked nervous laughter from me. So maybe yes, it’s time to journal about this. I wasn’t happy about it for the years leading up to this TMS.

 

[TrustIt]

@TrustIt! Oh my gosh, I relate. My husband does everything and I feel terrible about it. I try and remind myself that I didn’t ask for this, and I’d do the same for him. (In fact, I did quite a bit for years.) But still, I hate being dependent. Just hate it! And I guess this is what God wants me to learn. How to let go and how to have humility. Any time I get really discouraged, I remind myself this isn’t going to last forever.

Good for you on the little things you’re doing. Recently, I’ve started unloading and loading the dishwasher. It’s like climbing Mount Everest! But lucky me, I get to do something this hard every day. Maybe my self-discipline will be like steel when this all is over. Last night I had terrible symptoms in the night. Maybe because I climbed Mt. Everest right before bed. Might have to watch that next time.

Can you still play the guitar? Oh gosh yes-play with all your heart. Don’t think about your voice (what you don’t have). Think about what you have -guitar! I’m a writer who can’t type anymore. But I can still write longhand (and I use audio on my phone for the forum.) I was resentful at first. I lost all my ability to work and do what I love. But have I really? Who says longhand is worse? Maybe it’s forcing me to slow down a little. Think more while I write. I’m actually enjoying it more. Maybe you’ll learn something new on your guitar? Maybe you could even get a new guitar?!

I understand your fear, frustration, anger, guilt and hopelessness. I sure do! On a daily basis. You’re not alone! But I have friends on this forum who were bedbound and now they’re thriving. We can do it too. You also have to do some internal work. Journaling etc like what’s taught in the Structured Educational Program. Fight your way out. Don’t give up!

Thank you for every word in this! I have been looking for the secondsry gains in all this. No longer having to be such a responsible person after a life of it in extreme is certainly the biggest and covers a LOT! And oh my, humility! Have I ever been learning that one!
I love that you are reminding me to see the "opportunity" in some thing deemed unpleasant at the time.
I so appreciate the support! Just to not feel so alone... that state of being exacerbates everything.
Again, every word here could be mine!

 

[TrustIt]

Ok, this evoked nervous laughter from me. So maybe yes, it’s time to journal about this. I wasn’t happy about it for the years leading up to this TMS.

I am another who feels badly about being so dependent on my husband. Actually, he volunteered to start cooking years before I started getting ...er, not so good. So if it isnt resentment, what do you see that it could be? Guilt seems obvious but he doesn't make me feel any. That's all on me. He is glad to be here for me. Reassures and encourages me all the time. Maybe it's a deserving issue with me.

 

[Diana-M]

No longer having to be such a responsible person after a life of it in extreme

This has actually been a mind blowing realization for me. My entire life I’ve been “the responsible person in the extreme.” Sometimes by choice, and often because my life was one disaster after another. Now everything is shut down. All power off. A total reboot. And I can start to see how wrong it was that life doled out this much strain on me (rage about it!) and I also allowed it and/or forced it on myself, at times. I honestly have no clue what reasonable means or is. A normal amount of work/responsibility feels “lazy” to me. So here I am—the epitome of “lazy,” at this point. Having to learn to love myself without all the added “value” I thought I brought to the world. My body (my TMS brain) has called a time out. And I’m learning SO much. I have even wondered if my TMS brain won’t release me from this until it trusts me completely that I won’t screw this up again.

 

[Diana-M]

Maybe it's a deserving issue with me.

it’s funny how having TMS makes you learn all the things about yourself that you never wanted to see. I knew I had self-esteem issues, but I didn’t really understand the depth of them and what I used as a crutch to prop myself up. Now every day, I’m learning how to love myself just because I exist. That’s a really crazy concept!

 

[Diana-M]

I so appreciate the support! Just to not feel so alone...

I’m glad! This forum has saved my life.

 

[TrustIt]

it’s funny how having TMS makes you learn all the things about yourself that you never wanted to see. I knew I had self-esteem issues, but I didn’t really understand the depth of them and what I used as a crutch to prop myself up. Now every day, I’m learning how to love myself just because I exist. that’s a really crazy concept!

Not so crazy at all! I believe that's what we are all here to do ultimately. Not in the selfish way, but just to appreciate the gift that we are to life and the gift that life is to us.
I have terrorized myself with judgement around being a better person and for bringing this "stuff" on myself, causing my own suffering. I have definitely grown through this process. And I guess that is what it's for. I try now to see myself as the little girl I once was who was faced with a decision and was too young to know what to do. That solidified into my intense "need to know".
I'm thinking it's time to let go of that need and just flow with the go. Lol
It's peace I want. My mind won't allow that right now for whatever reason.

 

[Diana-M]

It's peace I want. My mind won't allow that right now for whatever reason.

I truly pray that for you! And it’s possible your brain is doing an OCD loop. When it lets this go, you’ll have peace.

 

[TrustIt]

I truly pray that for you! And it’s possible your brain is doing an OCD loop. When it lets this go, you’ll have peace.

Yes! An OCD loop is exactly what it's doing! I call it the cul-de-sac from hell! I wish you the best as well. We will find our power and look back on this as one of our greatest teachers.

 

[BloodMoon]

It’s like climbing Mount Everest!

@Diana-M Remember that on the way up to the summit of Mount Everest they start at a base camp and rest at other camps at various stages on their journey. I used to put the dishes away in the kitchen cupboards in two stages with a rest in between. My husband offered to put the remaining dishes away but I said that if I couldn't do them later on that day, I'd just let him know. Sometimes, with other tasks, I'd do what I could and then he'd take over when I said I'd had enough. For a long time what I could do was so ******* piddling that I cried my eyes out with frustration and anger and I often felt 'woe is me' (I definitely had that T shirt and badge!).

I'm proof though that you can recognise that your symptoms are very debilitating (compared to a lot of the people on this forum, some of whom can even, despite their TMS symptoms, run endurance races, albeit that that is likely to be with a great deal of difficulty) and feel sorry for yourself (or whatever one's emotions might be about it) and still go from bedridden to functioning relatively normally. Why? Because what you resist more than tends to persist and is liable to increase (a la Carl Jung) so personally I don't believe there's any should about denying the reality of one's current situation; it just stuffs down one's feelings about it and that's not good. The mere fact that you are here on this forum means that your conscious brain doesn't actually buy into attempts by your lizard brain to convince you that you're a unique, beyond-hope-of-recovery, case. However, your lizard brain is making it a right old wearying mental battle-royal for you to do your baby steps by making you want to just sit on the sofa and play games on your phone, and you are asking for help in combatting that. So my advice regarding this is to view any physical movement whatsoever that you do, as tiny as that may be, as a mini victory, and to keep reminding yourself of that...

"Every gentle motion is a quiet victory over yesterday’s pain." ~ Anon

And to recognise and to also keep remembering and reminding yourself that progress, as @TG957 says, is gradually gotten in this fashion:

"You push a little bit, then pull back if necessary, and then push a little bit again."

For example, on one day you might have managed to empty all the dishes from the dishwasher, but the next you can only take out two plates and put them away, but over time, because of your intention and effort, you will find that you can empty all the dishes, put them away and make yourself a cup of tea before you need a rest.... and so on and so on. That's the way it goes.

 

[mikeinlondon]

Remember that on the way up to the summit of Mount Everest they start at a base camp and rest at other camps at various stages on their journey. I used to put the dishes away in the kitchen cupboards in two stages with a rest in between. My husband offered to put the remaining dishes away but I said that if I couldn't do them later on that day, I'd just let him know. Sometimes, with other tasks, I'd do what I could and then he'd take over when I said I'd had enough. For a long time what I could do was so ******* piddling that I cried my eyes out with frustration and anger and I often felt 'woe is me' (I definitely had that T shirt and badge!).

I'm proof though that you can recognise that your symptoms are very debilitating (compared to a lot of the people on this forum, some of whom can even, despite their TMS symptoms, run endurance races, albeit that that is likely to be with a great deal of difficulty) and feel sorry for yourself (or whatever one's emotions might be about it) and still go from bedridden to functioning relatively normally. Why? Because what you resist more than tends to persist and is liable to increase (a la Carl Jung) so personally I don't believe there's any should about denying the reality of one's current situation; it just stuffs down one's feelings about it and that's not good. The mere fact that you are here on this forum means that your conscious brain doesn't actually buy into attempts by your lizard brain to convince you that you're a unique, beyond-hope-of-recovery, case. However, your lizard brain is making it a right old wearying mental battle-royal for you to do your baby steps by making you want to just sit on the sofa and play games on your phone, and you are asking for help in combatting that. So my advice regarding this is to view, and keep reminding yourself, that any physical movement whatsoever that you do, as tiny as that may be, is a mini victory...

"Every gentle motion is a quiet victory over yesterday’s pain." ~ Anon

And to recognise and to also keep remembering and reminding yourself that progress, as @TG957 says, is gradually gotten in this fashion:

"You push a little bit, then pull back if necessary, and then push a little bit again."

For example, on one day you might have managed to empty all the dishes from the dishwasher, but the next you can only take out two plates and put them away, but over time, because of your intention and effort, you will find that you can empty all the dishes, put them away and make yourself a cup of tea before you need a rest.... and so on and so on. That's the way it goes.

This makes total sense to me and I agree a with what you said. With respect to the pains you had when sitting did you phase that in too ie sit for 5 mins one day then ten another and so forth? How did you deal with that?

 

[dystonicrunner]

It was this video that really clicked it all for me

Nick from Australia was definitely one of the best Dan B.'s success stories! I find with all of them even if you have symptoms that are no where near what the other person is experiencing.... well the experience is really all the same.

Joe from Michigan was another amazing one that I heard recently.

 

[TrustIt]

Remember that on the way up to the summit of Mount Everest they start at a base camp and rest at other camps at various stages on their journey. I used to put the dishes away in the kitchen cupboards in two stages with a rest in between. My husband offered to put the remaining dishes away but I said that if I couldn't do them later on that day, I'd just let him know. Sometimes, with other tasks, I'd do what I could and then he'd take over when I said I'd had enough. For a long time what I could do was so ******* piddling that I cried my eyes out with frustration and anger and I often felt 'woe is me' (I definitely had that T shirt and badge!).

I'm proof though that you can recognise that your symptoms are very debilitating (compared to a lot of the people on this forum, some of whom can even, despite their TMS symptoms, run endurance races, albeit that that is likely to be with a great deal of difficulty) and feel sorry for yourself (or whatever one's emotions might be about it) and still go from bedridden to functioning relatively normally. Why? Because what you resist more than tends to persist and is liable to increase (a la Carl Jung) so personally I don't believe there's any should about denying the reality of one's current situation; it just stuffs down one's feelings about it and that's not good. The mere fact that you are here on this forum means that your conscious brain doesn't actually buy into attempts by your lizard brain to convince you that you're a unique, beyond-hope-of-recovery, case. However, your lizard brain is making it a right old wearying mental battle-royal for you to do your baby steps by making you want to just sit on the sofa and play games on your phone, and you are asking for help in combatting that. So my advice regarding this is to view, and keep reminding yourself, that any physical movement whatsoever that you do, as tiny as that may be, as a mini victory...

"Every gentle motion is a quiet victory over yesterday’s pain." ~ Anon

And to recognise and to also keep remembering and reminding yourself that progress, as @TG957 says, is gradually gotten in this fashion:

"You push a little bit, then pull back if necessary, and then push a little bit again."

For example, on one day you might have managed to empty all the dishes from the dishwasher, but the next you can only take out two plates and put them away, but over time, because of your intention and effort, you will find that you can empty all the dishes, put them away and make yourself a cup of tea before you need a rest.... and so on and so on. That's the way it goes.

Thank you. I am realizing, reading these comments, that I have been pushing myself, "shoulding" myself to get better, faster and prove to me this is working, wondering why it doesn't feel that way many days. I will attempt to now relax and know that WHATEVER I CAN DO in any given moment is a move toward healing. I just break down and sob every day, at any given moment. Sometimes it's is tears of joy to be outside and feeling relatively better. Then sometimes it's a pity party which I then chastise myself for. My belief is strong that the body heals itself if we get out of the way. I have gotten rid of most of the fear, tho I am dealing with a dx of hashimoto's and keep making up stories that I might be harming myself by denying that my symptoms are due to that rather than TMS. What is what????? Aaaaaghhh! Thoughts around this are so pervasive! I'm sure you can feel my frustration in my words. Yes, I have been tested ad nauseam and my thyroid numbers are in range according to some "experts" and show hypothyroidism according to other "experts". Contradictions everywhere! I have decision fatigue around this one thing. Not to mention stress. I am resisting the possibility of having to take a medication the rest of my life. Anyway, that's complicated. I will take the advice here and just be pleased with whatever steps, however small, I can manage. Letting go of the OCD loop is challenging! What I WANT and what is real rarely meet. I do know most of what I'm going through is definitely TMS if not all of it.

 

[Diana-M]

@Diana-M Remember that on the way up to the summit of Mount Everest they start at a base camp and rest at other camps at various stages on their journey. I used to put the dishes away in the kitchen cupboards in two stages with a rest in between. My husband offered to put the remaining dishes away but I said that if I couldn't do them later on that day, I'd just let him know. Sometimes, with other tasks, I'd do what I could and then he'd take over when I said I'd had enough. For a long time what I could do was so ******* piddling that I cried my eyes out with frustration and anger and I often felt 'woe is me' (I definitely had that T shirt and badge!).

I'm proof though that you can recognise that your symptoms are very debilitating (compared to a lot of the people on this forum, some of whom can even, despite their TMS symptoms, run endurance races, albeit that that is likely to be with a great deal of difficulty) and feel sorry for yourself (or whatever one's emotions might be about it) and still go from bedridden to functioning relatively normally. Why? Because what you resist more than tends to persist and is liable to increase (a la Carl Jung) so personally I don't believe there's any should about denying the reality of one's current situation; it just stuffs down one's feelings about it and that's not good. The mere fact that you are here on this forum means that your conscious brain doesn't actually buy into attempts by your lizard brain to convince you that you're a unique, beyond-hope-of-recovery, case. However, your lizard brain is making it a right old wearying mental battle-royal for you to do your baby steps by making you want to just sit on the sofa and play games on your phone, and you are asking for help in combatting that. So my advice regarding this is to view any physical movement whatsoever that you do, as tiny as that may be, as a mini victory, and to keep reminding yourself of that...

"Every gentle motion is a quiet victory over yesterday’s pain." ~ Anon

And to recognise and to also keep remembering and reminding yourself that progress, as @TG957 says, is gradually gotten in this fashion:

"You push a little bit, then pull back if necessary, and then push a little bit again."

For example, on one day you might have managed to empty all the dishes from the dishwasher, but the next you can only take out two plates and put them away, but over time, because of your intention and effort, you will find that you can empty all the dishes, put them away and make yourself a cup of tea before you need a rest.... and so on and so on. That's the way it goes.

@BloodMoon
Thank you so much for this post! It really is hard to not be able to do the simplest things. And I think it’s a little different than people might imagine. Until this happened to me, I never in my wildest dreams would have understood what it feels like. But I’m honestly not feeling sorry for myself. YOU are proof I can make it. And I’m following you! Every day, not giving up.

 

[TrustIt]

@BloodMoon I would really like to read your story but it's private. Would you allow me access? Thank you.