Rant, plus need support

Hi everyone—

Do any of you ever have family members who have a meltdown about your symptoms? Every once in a while, my husband loses it—and then he will say I’m wasting time with TMS.

This, of course, makes me angry— which makes my symptoms way worse. It makes me sad, because it is hard to hang in there. Both of our lives are extremely impacted by my TMS. These little moments also make me feel a wave of hopelessness.

I’m the type of person to keep my chin up. I spend a lot of effort keeping myself positive for this fight. I’ve found the worst thing you can do is believe that you won’t get better. You have to keep your eye on all the people ahead of you who have made it— and all the evidence you have that you have TMS.

The hardest part, I think, is that we don’t have an accepted Authority to fall back on. We are doing this counter to society. It infuriates me that the medical world, for the most part, does not accept that your emotions play into your health. This is the most ridiculous concept I’ve ever heard of.

I’m in a deep cave—a maze— fighting my way out. I can’t even tell you how far I’ve come. It amazes me. My life has been overhauled in so many ways. And yet revelations are still coming— 3 years into this.

I will be overjoyed when I get to the other side of this.

Thanks for always being there for me. It really means a lot!

 

Unfortunately no one will ever understand how it feels both physically and mentally until they go through it themselves.

The mother of my kids left me and made me out to be lazy (we had two young kids under 4) because I couldn’t help as much I as could. I felt guilty more for the kids sake but she constantly reminds me and can’t accept that I was very ill even to this day just because the doctors couldn’t find anything wrong with me although she could see I’d lost considerable weight and could barely move parts of my body.

I just don’t entertain her now unless it’s something to do with kids.

 

Oh my gosh, @Fal! That’s terrible. I’m so sorry that had to be added to your hardship of TMS. You are a strong soul to survive all this. I know we both have the same symptoms. It’s very hard sometimes to stay strong. But that one time my hand released—for no apparent reason— can give us both evidence that when our brains want to let this go, they will. Thanks for sharing your story. It helps me be brave—and even patient.

 

@Fal I am so sorry that this happened to you!

@Diana-M I think Fal is right. The people closest to us will have their own troubles related to our TMS in the way that everyone does when someone close to them is going through something. And yet the lack of understanding can feel like such a betrayal to us. It's really hard.

I think about this sometimes with depression and anxiety. A person who has never experienced clinical leves of depression cannot understand how different depression is from mere sadness. They think of their own experience of sadness and think depression must be like that. Same with anxiety -- they may know what it feels like to worry but they can't understand what it feels like for your whole body to be in the control of a fear that is not even connected to your present environment, like after a PTSD trigger.

I just don't think they can fully understand.

But maybe they also have some things about themselves that we don't fully understand. And maybe things about themselves that they don't fully understand. What we're doing has a level of raw honesty to it that is not really socially acceptable...and they themselves may not yet have accepted that honesty fully. They haven't been given either the suffering of TMS or the gifts of it.

Praying for you tonight!

 

Thanks, @dlane2530, for the beautiful thoughts! And for the prayers. I’m doing better…ranting always has a way of bringing relief.

 

I'm reading this thread and yes, you are all right. I think sometimes, people around us might understand a little but there is this other thing....they don't really know how to react. Truly. They have no idea how should they possibly react to our pain and suffering. I've talked about this in therapy. My therapist (a very intuitive one), she came up with this concept, this idea. I thought about it and yes, she was right.

I have an acquaintance, a former coworker, who lives in the US in a different state than me. I used to talk to her on the phone a few times/year. One time...I don't know what came into me and I opened up about some TMS stuff. She never called me after that conversation, for about 2 years. She never called me. It made me so so sad, rally sad. I talked about it in therapy and yes, this former coworker...she didn't know how to react to my open heart, with sharing with her my pain and struggles. So she never called me and that was it.

People do stupid things, say idiotic things, act in a cruel way etc. It happens sometimes. It doesn't always mean that they are mean or inconsiderate, short on compassion. Sometimes it means that they don't know HOW to react so they run away. And abandon you. And that's the way it is.

My former coworker called me after 2 years as if nothing happened. She wanted to tell me that she was getting married but could not/would not invite me etc. Anyway, we communicate sometimes but it's not like before. It's different now. And again...that's the way it is. I accept it.

 

My mom once told me my brain was too smart to cause me pain symptoms that weren't caused by injury or something physically wrong. As much as I've pulled back from the work now, I still get baffled thinking back on that one. I have had many fights with my fiance because he's all in but then suggests more docs.

 

I've had a similar experience with my wife.
As I got more and more she sick, she started pulling away. Spending more time at work, the hangs with her friends became more frequent and the stays longer. I felt totally abandoned and went from anger to the softer side of sadness. She was (is) one of the most generous, thoughtful, and considerate persons I've ever met.
I decided to confront her and what she said shocked me. She told me that, indeed, she had abandoned me because she didn't know how to help me and that she simply didn't know how to deal with me or her feelings. As it turned out, the conversation opened to much bigger rooms for both of us. Since that day she's completely shifted her stance to one of support that I so longed for. It was a big risk to put her on the spot like that and it could had gone ANY direction. But we've been drawn closer to each other, consequently, and our love and respect for each other has grown. There's no moral to the story.....just my experience with a "doubter"

 

I think that it's very difficult to witness and to live with someone that you love, with someone that is in pain, with someone that you want to help and can't. It must be very hard.

One thing that I try my best to do is ...as doctor David Hanscom suggested in his book ("Back in Control")... is not to complain about my pain. I do my best not even to mention it even though I suffer. I truly do my best not to write about it (not even here on the forum), not to talk about it with my parents on the phone, with my husband at home, with anyone.

I know that this strategy is the best. I know it from my own experience. It's better to endure in silence, in the privacy of my thoughts.

 

Hear Hear...

 

How is it a waste of time? If the medical world has nothing left to offer you then you might as well do this. It's a waste of time as opposed to sitting or laying around?

 

When he gets tired and scared, he wants me to go to more doctors (specialists) and maybe they will “find something” and “cure me.” I refuse to do that, because I know it will only traumatize me and I know what’s wrong with me. The irony is, he read Sarno’s Healing Back Pain twenty years ago and had a book cure, and since then has successfully fought off his own TMS when it recurs, for years. My symptoms are so bad and widespread, he wants to believe they’re TMS. But every once in a while, he loses the vision. My progress has been so slow—and frankly, seems negligible. I can feel internal changes. Like, the electrical buzzing has stopped. This is huge for me, but he can’t feel this or see it, so he doesn’t have as much hope. Even though he does believe me that it’s happening. It’s just been hard. But I hate when he tries to put that doubt in me.

 

@Sita - thank you for your support. That’s sad about your friend. I’ve had that happen to me. I know that people are at a loss in the face of other people’s suffering. It overwhelms them. And especially with me, because just watching me try to do anything physically is a pretty sad sight, if all you do is focus on the loss. Which is what people who love me do. They say, “you’re too young to be this old.” And I’m saying, “I’m not old. I have TMS. Just hang in there, people!”

@Freddie —I appreciate your story about your wife. That’s great you were able to grow closer because of your opening up. TMS really challenges a relationship. Luckily mine is still hanging in there. And it does feel closer. But I never dreamed we’d live through something like this, where he takes care of me. I always thought it would be the opposite. When I was young, my Mom had MS. I’m super patient with sick and disabled people, because of all that I learned from that experience. Now, I have to be the source of my husband feeling all this misery and stress, and I hate it. I wish I could spare him. But none of this is my choice.

@Rusty Red — you’re a tough cookie! Two people you live with and love don’t fully back you up (although it sounds like your fiancé does most of the time!) It’s hard to be around lack of faith in TMS— especially when you’re doing all in your power to get better. Having support is huge. I could never make it without this forum.

Thanks to all of you! ❤️lots of love to you!

 

I find Eckhart Tolle's concept of the pain body helpful in this regard. Here's Gemini's summary of it:

Eckhart Tolle's concept of the "pain-body" is a central theme in his teachings, particularly in his books "The Power of Now" and "A New Earth." It is a term he uses to describe the accumulation of old emotional pain that a person carries within them.

Here's a breakdown of the key aspects of the pain-body concept:

• A "Separate" Entity: Tolle describes the pain-body as an energy field or a quasi-entity that exists within a person's psyche. It's not a physical thing, but a collection of past hurts, traumas, negative emotions, and unhealed pain that has been stored in the body and mind. It's like a dark cloud of emotional baggage.
  
  
• Dormant and Active States: The pain-body can exist in a dormant state for long periods, especially in people who are generally happy. However, it can be easily triggered by certain events, thoughts, or interactions that resonate with past painful experiences. Once triggered, it becomes "active" and takes over a person's thinking and behavior.
  
  
• It Feeds on Negativity: The pain-body's main purpose is to survive, and it does so by feeding on negative energy. When it's active, it compels a person to think and act in ways that create more pain and suffering, both for themselves and for others. This can manifest as anger, depression, anxiety, a victim mentality, or a need to create conflict.
  
  
• Identification is Key: The pain-body's power over a person is directly linked to their unconscious identification with it. When a person is not present and aware, they become "possessed" by the pain-body, believing its negative thoughts and emotions are who they are. They might say, "I am so depressed," when in fact, Tolle would argue that it's the pain-body that has taken them over.
  
  
• Dissolving the Pain-Body: The way to disempower and eventually dissolve the pain-body is through conscious awareness and presence. Instead of reacting to or getting lost in the negative emotions, Tolle teaches that you should observe the pain-body without judgment or identification. By shining the "light of consciousness" on it, you create a gap between your true self (the observer) and the pain-body. This act of non-identification and acceptance starves the pain-body of the negative energy it needs to survive, and its power over you diminishes.
  

In essence, the pain-body is a metaphor for the psychological and emotional baggage we all carry. Tolle's teaching is that by becoming present and aware, we can stop feeding this pain and prevent it from controlling our lives.

 

@Ellen —Thank you for your post!!! I’m going to bookmark it. I love this and can’t be reminded enough about this.

 

Yes Ellen, thanks for your comment. We have to practice this, over and over, to build a new pattern/habit, to dig a new groove into our brains so to speak...

I've been using:"This is not me! This is not me!" when I go through suffering or anger or other stuff. Who suffers in fact? The ego.

I read and reread "The Power of Now" for years and I truly think that this book is very good. Someone suggested it to me and I got it in 2009 or 2010. I think Baseball studied it like a maniac as well, at least that's what I remember.

Someone said here a few days ago that she finds new helpful tips, implements them but then she forgets about them. It happens to me too. Some stuff I really have to write down in my journal. There are many resources here on this forum but some are tremendously helpful and should not be forgotten. But used over and over every single day.

I appreciate this thread and all the comments here.

 

My husband was the same but out of love. You know that this is true for your fiance. They just want to help and it's understandable. They still hope in a miracle doctor. My husband is better now with all these things, plus I'm feeling better anyway.

All the best.

 

Doctors usually send you to a specialist and then the specialist will diagnose you with something incurable. After that there is nothing else to do besides this. It could help to go to the end just to put an end to him asking you to see more doctors. It's also good to get the incurable label because it makes overcoming our TMS that much better.

 

To the doctor idea, I did actually cave and go see ortho urgent care for my shin the other day. Of course they just did an x-ray which is useless for stress fractures and gave me the shin splint diagnosis, told me to rest from running and get custom orthotics. Helpful. Didn't allay my fear at all.

 

I know it won’t help me to get the incurable diagnosis. I believe I have TMS without it.