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Discussion in 'Support Subforum' started by caligirlgonegreen, Jul 30, 2017.

  1. caligirlgonegreen

    caligirlgonegreen New Member

    Ive been dealing with mostly low back (3 years) and anxiety (whole life). I am doing so much better since my TMS diagnosis about 14 months ago. I was practically bedridden, closed my business (massage), couldn't cook, clean, drive, sit. It was horrifying to say the least. I also lost my beloved hot yoga practice. I felt like a failure in every aspect of my being, especially as a mother. I feel like this thing has ruined my daughter's life. I'm back to a lot of things I love and learned so much about myself, cut off relationships that were feeding my pain, started self compassion work, rested more, said no to people, and found a tribe of people that support my diagnosis fully. I say F off to those who don't get it at this point.
    However, I'm still struggling. Every. Day. Every day I have something, pain or anxiety. I have periods of time with little or no symptoms but they are fleeting. Last week I had wrist pain! What????? Never have I had wrist pain. I basically ignored it and it left after a few days. Now I have the worst stomach pain for 4 days now. I have always had an iron stomach, this is ridiculous. And this is in addition to my "regular" tms crap.
    Anyway, I'm doing everything I can, while simultaneously trying not to do too much and still trying to live my life. How much can one person take? I'm so sick of myself and this goddamn "mystery" illness that nobody has ever heard of (except you people!)
    I'm feeling like crap and mad at myself for feeling like crap.
    Any words of encouragement would be much appreciated. I'm out of money for my therapist (who I love) and I just need a break here.
    Thanks for listening.
  2. birdsetfree

    birdsetfree Well known member

    You are doing so great. I think you could be more self compassionate and patient. Allow yourself time to recover with love and attention to self care. Take the pressure off of yourself to be perfect, take a deep breath and reassure yourself that your doing ok. Celebrate all the successes you are having!
    Ellen and caligirlgonegreen like this.
  3. Baseball65

    Baseball65 Beloved Grand Eagle

    Well.... you can't ruin your daughters life. Only your own.

    I dealt with tremendous amounts of guilt when I had TMS (and still thought I was 'injured'). I have two sons who were small then and they are both outdoorsy-ball throwing types...My daily bike rides with my son were 'over'.... being relegated to being the 'hurt' dad with the bad back made me feel absolutely useless and ashamed... never mind the failed 'husband' guilt I had as well. I was near suicidal. I began to fantasize about ways to die and make it look like an accident so they could get my life insurance.

    That being said, after reading HBP and coming back to being 'better' than I was before (No fear of physical anything) I became a better dad.... skating pools, playing baseball, wrestling, rough housing.... the whole thing. I can still contend with them and I am in my 50's (they are now adults).

    However!!! I have been more than useful to them as a playmate. My youngest just had his first 'Oh my God I can't take it' TMS attack. Between his older brother (who is also TMS savvy) and I we both were there for him and he has beaten it down...in about a week! I can only imagine what a doctor would have said about his back spasm and pain .He is the best athlete in the family and is like Tarzan...he was skating when it happened and I am sure they would have banned that...and his new job in construction and his other job as a dishwasher...and his running around on stage in his band. THAT would have sucked.

    He realized it was attached to a painful situation with his GF. He also had the newfound wisdom to fend off an attack this weekend when he saw her again .It snuck back but he realized WHY....she was with her NEW Boyfriend. He felt it creep, went off by himself and got 'it' and the symptom went away

    You will be infinitely more valuable to your daughter with this type of wisdom then you ever would having the best insurance in the world and sending her to specialists.... and it's FREE...well, the book cost 12 bucks...nearly free!

    It isn't a mystery illness. It's no mystery at all. I get symptoms in a nearly direct correlation to the amount of crap I don't acknowledge.

    I don't know what you have done besides see the therapist, but we have very simple and detailed instructions on how to beat this thing.

    Refute the structural diagnosis, Recondition your mind, Return to activity...The three R's...that line about 'doing everything you can, but not trying to do too much'...that is a little vague. Part of the Three R's is to return to activity... the more vigorous the better.
    Simply acknowledging it and trying to get at the psychological roots is a part, but only one third of a three pronged attack.

    I will say one thing based on your forum name. Cali along with NYC are some of the TMS capitals of America. When I lived in LA and worked in entertainment my stress levels were through the roof...particularly gridlock traffic, 'check me out' culture and conspicuous consumption writ large...but that's just me. I am now a happy No one in Nowhere and although there are exasperating things here too , they aren't quite as thick.....yet.

    That is only an outer observation. I actually 'kicked' my TMS in LA, but it changed a lot of my values and led me away. I work in NYC and Cali sometimes but I am always glad to leave at the end of the job.

    ...and you don't need a therapist...just come and bitch at us.... we understand!
  4. caligirlgonegreen

    caligirlgonegreen New Member

    Thank you. Self care is a foreign concept to me. My childhood consisted of taking care of an emotional abusive mothers every need. I never learned to take care of myself, or feel safe for that matter. Until now, but it feels really unnatural and "selfish" still. Sometimes. Sometimes it feels great! I have grown from taking care of her to taking care of everyone else, even in my work. My yoga felt like the only "me" time and I feel my pain "took" it away. And I have deep rage because of it. I was also not able to feel rage before (suppression) but now I do what I can to get it out of my body. I have tried to return to my practice and it's great during and then I am knocked back with a horrible flare that can last for days. Then I can't work, play, etc and I feel like shit so the whole cycle starts over again. That's why I switched to more gentle forms of exercise but they don't have the same release for me. Today, I will take your advice and celebrate my successes. I will start by making a list of all the things I can do. Writing things out can be very therapeutic for me. Thank you for responding.
  5. caligirlgonegreen

    caligirlgonegreen New Member

    Well. I went from being super pissed at the bluntness of your reply to appreciating you telling me like it is and everywhere in between. I feel defensive about some things and also grateful for the no bs approach...HA!!
    That being said, thank you for relating to the "hurt parent" thing. Mommy was so active and then I wasn't. I am a stay at home mom and it was hard to fill the days when I could barely move. I had a lot of days where I would have to send my daughter off with friends and stay home sobbing. Those days are over. SO thanks for reminding me of that. I am never going back.
    This is the part that resonated with me so deeply, when you said you have been more useful to them in other ways. My daughter is only 11 and is also so TMS "savvy" as you put it. I like that better than TMS "prone". LOL. The people that love me the most have been telling me from the beginning that I am teaching her so much, specifically how to care for herself. A message I never got. I would argue with her being TMS savvy that this could be the greatest thing I could teach her. SO she will not suffer as I have. So when shit hits the fan (and it sure does!) like with your son and his GF situation, she knows what to do. I have had so many people tell me how "great" this whole experience has been for her and I wanted to punch them in the face! I needed to hear it just the way you said it and from a fellow TMS'er and parent. I cry as I write this because I feel the guilt leaving my body. Thank you.
    I meant mystery illness in the sense that most people have no clue what I'm talking about and even a lot of the people who "get it" will still argue a bit and tell me to go to the Dr. It's just ingrained as a society. Hopefully that will shift someday. I get it, you get it but most people don't. I felt frustrated by that I guess.
    The three R's....hmmmm I really feel like I have most of that dialed. I 100% refute the diagnosis. I was told I had a torn disc (L4/L5) a short leg, tilted pelvis blah blah blah. I did everything their way for two years (PT, injections, massage, back brace, sitting on pillows, chiro, rolfing, ice, anti inflammatories yada yada yada, and it wasn't until I stopped everything after reading HBP I got relief! What a mind trip. But I believe. Pain relief from reading a damn book. I'll take it.
    Recondition mind is ongoing.
    Return to activity, the more vigorous the better...well I have went white water rafting, yoga, spin, swimming, zumba, biking, camping, dancing....despite still getting bad pain flares after most. I keep trying. It does get a bit defeating. I just don't want to hurt worse anymore. So I guess I'm still scared of the pain.
    As far as La La land, I got the hell out of there 12 years ago for the same reasons as you, buddy! That place is no bueno for me. I live in a small town in Northern Cali. It's very chill. Glad you found your happy place too my friend.
    Last thing, my therapist is a TMS therapist who works with Alan Gordon. I've had sessions with him as well. Those people are saints. I don't bother with traditional therapy anymore, I need TMS support. But it can get costly and I needed more resources. I think I found them here. Thank you so much for your reply. You helped me today. Grateful! And glad you are doing well yourself. Keep that shit up.
  6. birdsetfree

    birdsetfree Well known member

    I know what it feels like to not have a safe place to go to. I have felt like that my whole life. I am still working on doing that for myself.

    Im not surprised you are enraged about having your yoga taken away from you. I lost a lot of what I loved over 15 years while I was under the pains/fears control. I am mostly back to a normal life - went travelling around Europe 6 months ago - it had been a dream of mine to take my daughter since she was born. She is 19 now.

    And yes there were so many heartbreaking moments/events that I missed out on with her because of the pain (lower back) but I also see how mature and empathetic she has become as a result. It has affected her also with anxiety but as she sees me recover and take on the world her own behaviour and feelings seem to parallel mine.

    I am glad to here that you will be positive with your progress. You are achieving something amazing!
    Ellen and caligirlgonegreen like this.

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