Rant, plus need support

[TrustIt]

Great story, @Ellen! This could relate to me believing I can’t walk. Maybe if I believe I can, my legs will loosen up and I can!

I have been in the same situation. There is so little I can participate in if it involves standing and especially walking. Social life? Ha!
I find such irony in the fact that my husband has had one health issue after another since we met 45 years ago, likely a lot TMS but he is just discovering this. I judged him harshly for it, and we almost broke up because of it. I was very healthy all my life and saw him as hypochondriacle. I was great on advising everyone else how they should live and eat Etc. THEN one day my reality came crashing down. I started having symptoms - one after another I got angrier and angrier because I had done everything "right" and should not be suffering any health issues! You know what I mean! I went to every practitioner and took every supplement in sight. You know the drill . Evidently I had to go through the darkest of nights and become completely dependent on him to "get it". What a wake up call! But having my own experience with pain and discomfort, I finally was able to emphasize with him. This was a huge lesson for me. For years I terrorized myself and piled on stress with every negative thought and belief my TMS brain could conjure.
So yes, huge lesson. No one can understand what another person is going through.
One thing I have trouble with being around other people is that I don't exactly know what to say when they ask me how I'm doing. I want to be honest but I don't dare tell them the truth. I know they don't want to hear it anyway. I don't want to be "that person" who attracts pity . What I usually wind up saying is I'm okay. I want to be a light to my friends. I'd like to walk in a room and just be radiant and full of energy. I want to make a contribution to something besides a chair cushion.
I may have lost my point here but to end on a positive note, I have come a long way. Every day I add a few steps, or put my laundry in the washer, and thank my body for being able to now at least get from point A to point B when at one time I was crawling through that space. I am finally able to conjure the conviction and the trust, the faith, that my body knows exactly what to do and have given up on any external solutions . This is certainly a spiritual journey for me as much as a physical one. "Every day in every way we are getting better and better". Self talk and, yes BELIEF in the seemingly impossible is key. I so appreciate all the support here.

 

[Diana-M]

A few more thoughts:

And you can't heal by making passive choices, they have to be active & conscious choices.

Totally agree! You can’t sit on the couch and do nothing just because it hurts! I started an exercise program last January and it changed me. It was conscious. I knew I wanted to get stronger, or I’d only get weaker. My depression about my circumstances was overtaking me. But the bed yoga gave me the feeling of power. (It’s a cool program that challenges, devised by a former pro wrestler.)

I also added the conscious choice of “working” each day, even though I was newly retired. I do this with consistency, day by day. I’m writing a novel. (I’m a retired writer.) These two things —the yoga and the writing—began to give me great hope. I was then able to add more things to do in my daily life. All of them are challenging, painful and hard. (Washing my hair! Brushing my teeth! These are like running for me. I can’t leave my house unassisted or drive yet, or I’d be out and about!)

if you don't go out and apply it in the real world? It's just a bunch of words.

I think there are two major stages to healing from TMS. The first is mental and emotional. You have to want to live. You have to overcome depression. You have to grasp what TMS is all about. And, you have to learn what past and present issues are causing it. For me, this took a good year of work, every day. (Still ongoing; still discovering hidden things!)

The second stage—and the most important—is to DO things! For those of us with symptoms that have all but crippled us, this is challenging. You can’t do much physically—even if you wanted to. I’d love to RUN, let alone WALK! But I can dance in my chair. I can set a timer and stand longer and longer each day. AND, I can learn to be thankful, even though I’ve temporarily lost the ability to do the most basic things. (It’s a huge psychological hurdle to get up and over the fear and sorrow that causes. But it’s possible! If you get good and determined.) I read about this one lady who cooked dinner each night and sat and rested when her legs buckled. She didn’t care how long it took. That’s the kind of creative determination it takes.

We will always choose a familiar hell to an unfamiliar heaven' is so spot on for us humans.

This is true. But some people have had their fill of hell, and I’m one of them. I’ve always opted to LIVE! I’m a fighter. And that’s what I’m doing now. Although, it’s not the same as leaving a violent ex-husband (which I did) — it’s taking the same courage and all-encompassing effort. To leave a domestic violence scenario, I faced life and death. I’d rather leave hell. Being housebound right now is hell. But I’m in the process of fighting my way out. (This is also tricky, because I also need my husband on the same page. And he has his own grief and issues to deal with when it comes to this.)

BUT, you guys have definitely made me think. I’m going to keep the heat up on my efforts to do hard things. I’ll even up the ante on that! I wish I could run or go out with friends by myself or take a class. I would! But I have to work with what I’m given. I KNOW there are people on this forum in my same circumstances. And Dr. Sarno would have declined us as candidates for his class. These are the people I want to help. I want them to have hope. And that’s why I always say: if you do the work, you will get better. Just don’t give up. I’m not. And I’ll show you guys it can be done, just like others are showing me. If you have hope: you have everything!

 

[Diana-M]

This is certainly a spiritual journey for me as much as a physical one.

@TrustIt —I loved your post!!! I think some people, most people, and even veteran TMSers, have no idea what it’s like to become a sack of potatoes with practically no physical capability. TMS can take you that low— and you didn’t ask for it! The path to freedom is not simple; I don’t care what anybody says. Your battle gives me hope! Thank you for sharing it. I hope to see us both fully well one day.

 

[Sita]

This is certainly a spiritual journey for me as much as a physical one.

Same here. I feel that pain can be a teacher.

I talked to a nun on the phone one time and she said:"Give your pain to God. Even if you don't have anything else to give him, just give your pain to him." It got me thinking...

 

[TrustIt]

Same here. I feel that pain can be a teacher.

I talked to a nun on the phone one time and she said:"Give your pain to God. Even if you don't have anything else to give him, just give your pain to him." It got me thinking...

Yes, I totally agree....surrender is the ultimate healing...give it over to God/Universe/Source, whatever your understanding is for a higher power. It's the very last in an excruciatingly long list of trial and error solutions when the whole TMS lesson is that there is nothing wrong in the first place. Even putting "effort" into convincing ones self that TMS is the "cause" is perpetuating the basic belief that something can be done to change something. Very tricky. It sounds so simple to just say a word or phrase that instantly claims our innate power, but any thoughts beyond that will circle us right back into our perception that there is a "problem".

 

[TrustIt]

@TrustIt —I loved your post!!! I think some people, most people, and even veteran TMSers, have no idea what it’s like to become a sack of potatoes with practically no physical capability. TMS can take you that low— and you didn’t ask for it! The path to freedom is not simple; I don’t care what anybody says. Your battle gives me hope! Thank you for sharing it. I hope to see us both fully well one day.

When I became this "other person"...the sloth...the selfish, entitled queen who sat while her kind husband prepared her meals, cleaned up, maintained 36 acres of our home and farmland, carried in the groceries and lifted anything over a pound for me, this is how I saw myself. I hated her. I have been anything but lazy all my life and this innability and lack of all motivation to do much of anything was depressing and enraging, among other extreme emotions. My cherished but taken for granted independence was sorely threatened. The more I judged myself, the guiltier I felt, the worse my symptoms became. Obsessed/stressed myself almost to death. Not a lie.

This sounds so cliche but I am beginning (I repeat for emphasis, beginning) to see the gift in it all. I would never have experienced this real connection that I now have with Source had I not gone so far in the other direction. Contrast will certainly give you a shift in perspective.
Currently...The more I ignore any thought of victimhood, (and that is a habit I'm still changing), the better I feel overall...body, mind, and spirit. If I may wax a bit philosophical, I believe this is a journey back home and no one promised it would be easy. I think we are close.

 

[Sita]

I feel the same regarding the Source. Yes, quite close. Closer than you think...

There is no growth without friction. An easy life is not a glorious life.

 

[Diana-M]

My cherished but taken for granted independence was sorely threatened

Oh boy, this exact same thing happened to me. I was SO dependent on my own independence, that when I became vulnerable and weak from TMS, my pride was stripped away. I had to start all over with who I am. I’m not strength, I’m a daughter of God (my Source). He’s the strength. It’s a process. Very painful. But very valuable.

This sounds so cliche but I am beginning (I repeat for emphasis, beginning) to see the gift in it all. I would never have experienced this real connection that I now have with Source had I not gone so far in the other direction.

I agree, there is a gift in it all. I’ve been a devout Christian my whole life, and have always felt close to God. But now, I feel closer than ever. I feel in a very intimate relationship with God. It’s priceless to me.

There is no growth without friction. An easy life is not a glorious life.

So very true!!!

 

[Rusty Red]

OK, but if you wanted to make cookies for me I wouldn't complain, because cookies.

 

[Diana-M]

OK, but if you wanted to make cookies for me I wouldn't complain, because cookies.

 

[Diana-M]

I am finally able to conjure the conviction and the trust, the faith, that my body knows exactly what to do and have given up on any external solutions .

Trustit,
This! is just haunting me. Can’t get it out of my head. Something feels right about it. The ultimate letting go.

 

[JanAtheCPA]

Even putting "effort" into convincing ones self that TMS is the "cause" is perpetuating the basic belief that something can be done to change something. Very tricky.

Whoa, @TrustIt! It IS tricky but I've been flummoxed for a long time to explain why and how. I feel like this captures it! Food for thought...

 

[Mala]

This is true. But some people have had their fill of hell, and I’m one of them. I’ve always opted to LIVE! I’m a fighter.

@Diana-M. Not everyone writes about their hell here or what they have been through but that doesn't mean we have suffered less. To me this indicates that you think you are an exception. TMS isn't only about fighting. It's more than that. It's a mindset. It's a a belief, an understanding.

I grew up in a home where my father abused my mother all the time. There was a lot of violence, I won't go into details but it was bad & then I saw my mother try to kill herself when I was 8 right in front of my own eyes by drinking a bottle of kerosene. I could go on........& on ..... & on. But I won't.
When I was 11 i visited my grandparents in India on my own for the summer holiday & I made a decision not to go back home. I decided I wanted to be in a safe place & I made a choice. I had to learn a new language, get used to a new environment & it was the best thing I did for myself. I stayed there for the next 13 years.

My father died when I was 18 & I did not go back for the funeral. It was a relief & a release.

You also mention a lot how physically disabled you are. The thing is that others are or have been disabled as well. The TMS wiki & internet are full of stories of TMSers who suffer or have suffered greatly. Many of us here have been bed bound, I know I was. Again this is an indication that you think that you are an exception.

And Dr. Sarno would have declined us as candidates for his class.

That is a very revealing statement. Why would you believe that? Is it because you are not convinced that you have TMS? Could it be that you really believe you have something structurally wrong with you?

Could you perhaps benefit from another treatment modality or modalities that better suit your mindset, that could accelerate your recovery, provide you with better outcomes especially with regard to your mobility & balance issues?

Just some thoughts.

All the best

 

[JanAtheCPA]

I'm a little late catching up to this interesting thread, @Diana-M. I was intrigued by @Mala's post where she said this, among other insightful and challenging things:

I understand that baby steps are important, I also understand that you need to feel safe.

to which you responded

Funny, you should say this—my husband also says this. My fear has to do with balance. I don’t have balance. So I’m extra careful in all my movements.. .

So in what is essentially a Yes, But... statement, you seem to have drawn a delineation between pain and balance, and that the balance is somehow different and requires a different approach. Well, I'm not buying it, my dear. I'll join with Mala and agree that in the world of TMS symptoms, your balance issues are not that special. The neuroplastic rewiring needed is essentially the same as for pain. Right? How can it not be?

If you want to challenge this balance issue, go to a professional, just like you might go to a professional trainer if you wanted to challenge yourself to lift weights, or run a marathon. A professional will push you in a place of safety and qualified supervision. Back in 2011, "before Sarno" I found a dizziness and balance clinic run by a licensed physiotherapist, where they ran ALL the vestibular tests on me, only to come back with the diagnosis I've always craved, which is that they couldn't find anything wrong. My actual balance as tested was excellent (years of yoga and skiing) but the dizziness and brain fog and the shaky legs were the vestibular symptoms that were slowly disabling me. So they started me on their training program, which was all about rewiring my brain and nervous system and learning to not fear the symptoms. All the concepts that we now see being incorporated into PRT/neuroplasticity programs.

It was that clinic owner who decided I might be a migrainer and suggested the migraine diet - which as I've described often, led me to the serendipitous discovery of Dr Sarno, and I took a whole different path. I was already working out once a week with a personal trainer, so I simply incorporated my vestibular rehab into her challenges, making rapid progress along with doing the SEP.

So for you, rather than yet another medical assessment, how about engaging the services of a qualified balance and sports professional who, after a proper assessment, can safely push you beyond what you think your limits are? Perhaps that would be a constructive and proactive alternative that your husband would also feel good about.

 

[Diana-M]

Thanks to everyone who has given me advice here. I appreciate your time and wisdom.

 

[Diana-M]

that doesn't mean we have suffered less. To me this indicates that you think you are an exception

@Mala
I’m so sorry to hear of your very difficult childhood. Hearing of your horrors helps me understand you and just a little bit of what you’ve overcome. Your vulnerability in sharing it is brave. Thank you.

I’m sorry you somehow misunderstood my intentions. I never once thought I’m an exception or that others haven’t suffered. Sometimes on internet platforms it’s difficult to fully know people or what they are trying to express or why. Pardon any offenses.

 

[Mala]

@Mala
I’m so sorry to hear of your very difficult childhood. Hearing of your horrors helps me understand you and just a little bit of what you’ve overcome. Your vulnerability in sharing it is brave. Thank you.

I’m sorry you somehow misunderstood my intentions. I never once thought I’m an exception or that others haven’t suffered. Sometimes on internet platforms it’s difficult to fully know people or what they are trying to express or why. Pardon any offenses.

No offence taken but I think what Jan has written to you resonates big with me.

Whether it’s pain, fibromyalgia, dizziness, CFS, balance whatever, the approach is the same. Again you are not the exception so you will as @JanAtheCPA rightly says still have to do the work & she has given you a great outline on how to approach your recovery.
Good luck!

 

[Diana-M]

Thanks for the advice, @Mala and @JanAtheCPA. I know my balance issues are TMS, thanks to a number of posts by Jan in the past sharing her story. So I know it’s curable. My biggest question has been “how do you challenge it, when it’s hard to move?” Jan has answered that question!

If you want to challenge this balance issue, go to a professional, just like you might go to a professional trainer if you wanted to challenge yourself to lift weights, or run a marathon. A professional will push you in a place of safety and qualified supervision.

This makes total sense.

Balance issues have been coming and going for me for years, especially when I’m under stress. This latest round of TMS has exacerbated it greatly, along with everything else. But it’s a TMS symptom, for sure. I don’t want to stay stuck. So I’ll have to go after this.

 

[CalmIsTheCure]

When I became this "other person"...the sloth...the selfish, entitled queen who sat while her kind husband prepared her meals, cleaned up, maintained 36 acres of our home and farmland, carried in the groceries and lifted anything over a pound for me, this is how I saw myself. I hated her. I have been anything but lazy all my life and this innability and lack of all motivation to do much of anything was depressing and enraging, among other extreme emotions. My cherished but taken for granted independence was sorely threatened. The more I judged myself, the guiltier I felt, the worse my symptoms became. Obsessed/stressed myself almost to death. Not a lie.

This sounds so cliche but I am beginning (I repeat for emphasis, beginning) to see the gift in it all. I would never have experienced this real connection that I now have with Source had I not gone so far in the other direction. Contrast will certainly give you a shift in perspective.
Currently...The more I ignore any thought of victimhood, (and that is a habit I'm still changing), the better I feel overall...body, mind, and spirit. If I may wax a bit philosophical, I believe this is a journey back home and no one promised it would be easy. I think we are close.

I loke what you say. Poetic ane i believe it to be true.
What would you say your message is? What did the higher power want from you?

 

[Sita]

Surrender. Trust and love.

So...in other words: "Trustit!"