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So Utterly Confused - The Start of my Story

Discussion in 'Support Subforum' started by zclesa, Jun 11, 2019.

  1. zclesa

    zclesa Well known member

    OK, I am posting this because I am really confused about the recovery process. I'm really confused about my own "illness" and I just want to get this out. I know I WILL get better. Firstly, because there is nothing wrong with me. Secondly, because I have beaten self-harm, bulimia, a huge anxiety disorder, alcoholism, Borderline Personality Disorder and more - I am not about to let this beat me.

    BUT I don't know how I am going to achieve this. There are so many conflicting opinions and stories on here about how much work to do, what to focus on etc. I don't necessarily need anyone to answer this - although you can if you like and have anything you think is helpful to say - but I want to set out my confusion in black and white. I sometimes find that posting on here increases my self-awareness AFTER I have posted. So here goes with my story so far and what I am confused about.

    I have medially unexplained symptoms that manifest as something called "Vestibular Migraine" (VM). I have had symptoms 24/7 for the past 5 years. I have had about three weeks "off" from it in total in all this time.

    Prior to this, I "believe" I was happy and healthy. I was doing work I loved, things I loved, volunteering for causes that were important to me, had (and still have) a wonderful partner, and was following and enjoying a Buddhist practice. I worked for myself and felt free. I didn't have loads of money, but I was confident and had a fulfilling purpose in the world. I also know that I was a workaholic, perfectionist, high-achiever, and goodist, sometimes to my cost. I put my own needs last.

    I have had psychosomatising since childhood, but never with anything this chronic. A couple of years prior to my VM, I had a bad case of sinusitis, which caused vertigo, dizziness and balance problems. It took me a few months to get considerably better and about 6 months to get over it totally including the fatigue.

    Seemingly out of the blue, I developed dizziness, balance problems etc. again. I didn't panic. I didn't have health anxiety. I continued working and doing my normal activities for the first 5 months believing I would just get better like I did before. It wasn't getting better, so I took a break from work but tried to stay fairly active, and believed it would resolve itself.

    It was only after a year of not getting better that I tried migraine prevention medication, none of which helped, supplements etc, and started (a bit obsessively) trying to find a way to get better, although I did also accept that I might never get better or it might take several years (based on other people's various experiences with VM).

    I got to a point of depression about a year ago and started struggling again with alcohol. I could not deal with being ill anymore. So, I got myself into my local alcohol service to get counselling, as I know I can not drink ever again.

    I started with a counsellor 6 months ago and about a month ago, I discovered that my mother has Narcissistic Personality Disorder, which basically means she doesn't really have any empathy and used me (and my sister) to meet her own needs, with no regard to how this would effect us.

    I felt nothing but relief upon discovering this. I finally understood why I have the personality I do, why I can treat myself badly and put myself last, why I don't always ask authentically and people-please instead. It felt very freeing to know that there was actually nothing fundamentally "wrong" with me, but that this was a result of how I was raised.

    I also realised that my chronic VM started, and never left, the very day after visiting my mother after a long period of zero contact (on her part - she felt I had wronged her, which I hadn't). I had dreaded going and felt very nervous. It went OK, although it was totally bewildering to me that she never apologised for her behaviour or even mentioned the incident that had happened or the long time she had refused to speak to me. I understand it now that I know she has NPD.

    So I realised my symptoms were 100% psychosomatic. I actually feel OK when I go on short trips abroad - I thought it was for physical reasons (sunshine, better food, less artificial light etc). I guess now it is because there is no chance my mother can contact me. She texts me every night when I'm home. Not saying anything nasty, just texting random things about her day.

    OK, so I accept that illness is totally psychosomatic. I understand that I must have a huge amount of repressed rage. Over the past couple of weeks, I have increased my activities, which often makes my symptoms worse, although sometimes relieves them. I have done bits and pieces of the TMS Ed Program and Alan Gordon's and using suggestions from Steve Ozanich's book, including a bit of journaling, dream programming, and letting my inner child be playful.

    I am a lot happier now but my symptoms have been at their worst for 5 days now (The more I do, the worse I feel generally with this illness). It feels like I'm having a stroke, just to describe the symptoms at their worst - I know I'm perfectly well.

    I can't medicate myself every day as the only thing that works is Valium, which I clearly can't take every day as it's addictive. I only used to take it maybe once or twice a month on days where I "had" to be OK like weddings, or when I was so overcome with the migraine that I could barely even see through the pain.

    I saw my counsellor today and she said something which suggested I am being too controlling in trying to get over this. This is probably true and I am probably focusing too much on the outcome. But I'm so confused now. People are saying to push through, stay positive, stay active and do things you love (It tried that in the first year and it didn't work, but I am trying it again). Others are saying to relax and not bother about digging around in the past (I wasn't in the first year, but I didn't get better).

    So I do think I need to deal with my past but stay focused on positive things too and get out and do things. I think I need to change and be more authentic (care more about myself and my needs). That's what I'm trying to do. I don't know how to stay balanced with this at all. My counsellor seems to think I'm trying too hard. But what can I do, when I'm not trying? I'm either just debilitated then or feeling my symptoms as I'm not distracted. It's all so confusing.

    OK, so what I got from writing this is that I'm TOO focused on the outcome, which it's very hard not to be, but that is counterproductive and causes more stress and tension.
    BridgetE and Helenlouise like this.
  2. Baseball65

    Baseball65 Beloved Grand Eagle

    This outcome independence that everyone is talking about confuses me. If I recall I read the forward to Sarno's Book and in spite of still being in excruciating pain , I called disability (insurance) and told them I'd be at work in 5 weeks.... clearly expecting a positive outcome.... and I got one. The message resonated with me so deeply I was certain I had finally found the solution.

    except for your choice of symptoms, my personal history and personality was a lot like yours. Same Mom.... Similar response to a similar environment.

    Have you read the literature, e.g. Sarno's Books? (divided Mind, mindbody presciption, Healing back pain) I am biased as all get out BUT I used Healing back Pain as a gospel text, verbatim, rock solid truth and it worked...

    I did everything it suggested... if it described someone else's recovery, I incorporated it... I did the 12 reminders, I read and re-read the text til it was printed inside my eyeballs.

    There was no internet when I got well, so I had a 12 dollar paperback a wish and a prayer... BUT since you're AA saavy I DID approach the text the same way I had approached the big book... studying each and every concept and applying it to myself...and just like I had a profound and deep experience with the big book, I had the same experience with TMS.....God removed the pain just like the obsession to drink.... VERY similar.

    just trying to shake some stuff loose for you.

    grapefruit, Helenlouise and zclesa like this.
  3. zclesa

    zclesa Well known member

    Thanks, @Baseball65 . I think, when we are too "outcome-dependent", were are not truly n the present moment and still being very conscious of our symptoms by measuring them. Sometimes by trying to force our mind away from things, we actually bring them closer. Obviously, you know the 12-step program; so with that you have faith, but you also turn things over to your Higher Power, not clinging as much to an outcome, but trusting it will be OK. I think I need to be more like that with this program. It sounds like that's what you did. Study the literature, apply the right steps, but trust in the outcome and turn it over, thereby letting go of even more pressure on yourself.

    I 100% believe this will work, but I'm still clinging to the symptoms by forcing my will on them, controlling, and measuring (I don't mean to, but it's hard not to!) instead of just letting the program work. And that makes me think about my symptoms more.

    I think the quality of distraction matters for me. For example, I felt sick as a dog this morning, but I had decided to go to yoga every Wednesday. I started last week. So I got on the bus - the centre is an hour away - feeling like utter shit - dizzy, nauseous, headachey, blurred vision. I was kinda constantly thinking if I felt too sick to do yoga at all, even though I was trying to distract by reading a book - which makes my migraines worse sometimes. I couldn't concentrate on the book as I was getting nystagmus (jumping eyes), and that was making me feel even more nauseous. So I was very much focused on my symptoms, while I was trying not to. I was feeling pretty awful by the time I got there.

    But during yoga, I felt very mindful and present and after class had finished my symptoms had faded and although I still had a mild headache, I felt great. I'm not doing yoga to retrain my balance - I'm doing it to be in my body in a nice, safe, mindful way.

    I need to do more of that sort of thing and less of forcing myself under supermarket lights when I already been out all day with an excruciating headache, or trying to read a book on a busy bus when I can barely see straight. I can do those things later. I am someone who has never been gentle with myself. While I am committed to doing this, I think I also need to be gentle. Do one thing at once, and not make myself completely incapable and so sick I can't help but focus on my symptoms.

    I've read The Mindbody Prescription and Steve Ozanich's book The Great Pain Deception. Since I am familiar with Freud and Jung, I wasn't sure it was necessary to read The Divided Mind, and since I don't have back pain, I wondered if I should bother with the ones specifically about back pain. I'm also going to read Gabor Mate's book "When the Body Says No" as I know that applies to me. I went into the caring profession and stopped taking care of myself. It is very unfortunate that reading can make my symptom worse, especially as I love reading. I shall read my books at home for the moment, I think, and maybe either listen to music or do some meditation on the bus.

    One consistent, committed step at a time, one day at a time. I think that's the right path for me.
    BridgetE, Helenlouise and Baseball65 like this.
  4. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Hi @zclesa, I've been following your recent posts with interest and I think you have a lot of good input to offer. Welcome to the forum!

    I'm going to throw a few things out there which have excited me recently. I was also diagnosed by a vestibular specialist as a "migrainer" back in 2011, but discovered Dr. Sarno shortly after that, and never looked back. However, vestibular symptoms have always been the hardest symptom for me to shake when I backslide. I (and many others) have really been struggling off and on since the fall of 2016 (and that's all we are going to say about that) and it's quite clear to me that my relapses are the result of mindlessness - allowing things to get to me, allowing the negative chatter of my primitive fearful brain to take over, not breathing, and beating myself up instead of accepting myself.

    One thing I've started doing very recently is listening to podcasts, of which there are many excellent ones out there on the subject of TMS - the ones I'm listening to are all based on Dr. Sarno's work. They are a great way to find absolute gems of wisdom and receive reminders of what works when doing this work. And the fact that you're listening to someone, often two people, talk about doing the work themselves, and their own struggles, is immensely powerful and positive. And BONUS! You can always listen to a podcast when your eyes and your vestibular symptoms are giving you fits. You can stream them, or, if data or a good cell connection are in short supply, download them to your device for later.

    First, here are three things I wrote just today for someone, and when I looked at them before I posted, I thought - gosh, for me anyway, these are the KEY things we have to remember and keep doing. Here they are:

    1. This work is all about taking control over your unconscious negative thoughts, the ones that your primitive brain is trying to overwhelm you with - so that it can keep you safe and in fear at all times. You MUST TAKE CONTROL and call bullshit on that crap!

    2. You also MUST be willing to look hard and completely honestly at the negative emotions your primitive brain is trying to cover up with the symptoms.

    3. Most importantly (and this is mentioned frequently in my favorite podcasts, in the SEP and the Recovery Program, and in every Success Story) you have to stop obsessing about your symptoms. That's just your primitive negative brain, keeping you down and too afraid to live your life.
    I have to say, I totally applaud you for knowing how to live up to #3, by taking a 1-hour bus ride to do yoga when you were suffering with vestibular symptoms! You are much braver than I would have been, - and you were rewarded for your bravery! (BTW, I was told by the young lady who tested me for vestibular issues back in 2011 that at age 60, my balance was better than hers. My response? "Thank years of yoga!")

    Okay - the two podcasts that I am listening to these days when I need a boost or a reminder are:

    The Mind And Fitness Podcast, by Eddy Lindenstein (aka @LindenSwole ) I haven't listened to every episode, but my current favorite is #70, an interview with Dan Buglio, and the one that got me started as a fan of Eddy is #65, an interview with our own @AndyB.

    The Cure For Chronic Pain, by @Nicole J. Sachs LCSW Many brilliant episodes, the last one I picked to listen to, and loved, is #23: "Chronic Pain is NOT a Mental Health Issue".

    Finally, here is a link to a lengthy discussion on the forum about Psycho-Physiological Dizziness: http://www.tmswiki.org/forum/threads/psycho-physiological-dizziness-syndrome-ppds.4599/ (Psycho-Physiological Dizziness Syndrome (PPDS)) There's a link to a downloadable PDF article that is a brilliant discussion about PPD.
    Last edited: Jun 13, 2019
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  5. zclesa

    zclesa Well known member

    @JanAtheCPA Thank you so much for your help and for caring enough to give me all this wonderful info!

    You know, I never even noticed how mindless I had become and how many little anxieties I have. I used to have a huge anxiety disorder so bad I couldn't even leave the house or do anything much in front of other people without drinking alcohol beforehand. So whenever people have said it'might be stress or anxiety I have been really angry and frustrated - like, "NO, I had an anxiety disorder. I KNOW what that feels like and it doesn't feel like this!"

    So, I don't have those huge overwhelming phobias anymore, but when I stop and pay attention to my mind, I do have many little anxious thoughts and stress-inducing behaviours. I think it all adds up. A lot of them are caused by my personality, shaped by the past. A psychoanalyst once said to me "You act like you have NO rights in the world." I cried my eyes out. It is utterly true. I apparently have "no right" to be imperfect, have my needs met or put myself first. All my sadness, fear and rage have always been turned inwards to hurt myself for fear of upsetting others. I care way too much about what others think and not enough about myself. I often self-sabotage, knowing full well I am doing it but feel compelled to do it anyway. It has been very freeing to finally know WHY I do all this. While I would never trade my entire personality - I love a lot of it - I think I do need to work on these things or I will always be TMSing in some way.

    Acceptance is always the greatest step towards recovery. And it does lead to change, which many people find counter-intuitive. But by accepting ourselves, we validate and value ourselves, which means we are more likely to treat ourselves better instead of hurting ourselves. I have always struggled with self-compassion and self-acceptance. Up until a week ago, I thought my "inner child" was pathetic and should have known better. How sad is that? I don't think she is anymore. I think she's awesome.

    I am currently on day 6 of a severe migraine - which I almost never get - but I have only taken meds twice. It is a pity this messes my sleep up so much. It is so painful that it is very difficult to get to sleep. And I always feel worse without enough sleep. But I have still done some positive and productive things and at times the migraine has just stopped. But I constantly wake up with it since I have been doing TMS work, which does make it difficult to get on with my day at all. But I am getting on with things as much as possible. I haven't given in and I know 100% I can get into a better state than this.

    I think one of my greatest hurdles is probably the fact that nothing comforts me - apart from alcohol, and I can't go there again. Nothing really soothes me at all. I find it excruciatingly difficult to relax on my own. I can relax if someone massages me but I do not feel comforted or relaxed by typical self-care things that people do like having a long bath or whatever. I was never shown proper comfort as a child, so I'm not sure whether I just don't know how to feel it or if I am blocking myself from allowing myself to feel it, like it's wrong for me to do that or something. This is certainly not something I am conscious of, but I know either one is a possibility. Perhaps I need to have others show it to me first - my yoga teacher is very soothing! - so that I can start to allow it into my life and create it for myself.

    I will listen to the podcasts you mentioned, starting with the episodes that you found most helpful, as my eyes are pretty bad today. I was about to apologise for my rambling brain-vomit, but I won't because I don't need to. This is what I think and feel and it is valid. The more I can catch out these urges to apologise for being me and saying what I feel, the better I will get.

    So instead I will just thank you for reading and helping me get this stuff out and for giving me even more resources in this journey.
    BridgetE and JanAtheCPA like this.
  6. grapefruit

    grapefruit Peer Supporter

    I too don't fully understand the concept of outcome independence, unless it just means not giving in to fear and frustration when you have a setback. I experienced a variety of reactions to setbacks, from laughter to anger, and I personally found that getting really angry at the symptoms was very effective. I very often treated TMS like war, and I completely healed, from bedridden to running. I think the key thing is to maintain that knowledge that YOU are in control and that TMS is a psychological strategy, NOT a structural problem. Reacting with anger indicates that you know what is going on, and are fed up with it.

    I also treat Sarno's books like gospel text. He has healed the most people of anyone; he is the expert.
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  7. zclesa

    zclesa Well known member

    Thanks @grapefruit. So glad you have made such great progress!

    I struggle with the concept of getting angry at my subconscious. I am a trained hypnotherapist and psychotherapist, and I was always taught to treat the subconscious with respect, although you must be firm with it too. I managed to help a client cure her Endometriosis, which was totally psychosomatic, within two sessions. We didn't yell at her subconscious at all and she got better after 20 years of suffering.

    I wish I hadn't been told by Drs that I had "Vestibular Migraine" due to nerve damage in my inner ear. Now that it has become chronic, I have got so sick now that I am too brain foggy to use the tools I used to treat other people! However, I am 100% certain that I will be cured as I know it is psychosomatic. Perhaps seeking out a colleague might help me, since I'm familiar with that way of healing already.

    I guess we all have our path. But perhaps the reason why getting angry works very well for people is because we have repressed anger and this is a form of finally expressing that. I won't put my psychotherapy hat on too much here, but there are various reasons why that would work for a lot of people. In any case, I am so glad you are healing well.
    BridgetE likes this.
  8. grapefruit

    grapefruit Peer Supporter

    I've reflected a lot on the angry reaction that many people experience and have found to work in their healing. It worked for me, and I've read many other stories like that. I know in The MindBody Prescription Sarno says, "the conscious addresses the unconscious, the firmer the better," or something to that effect, near the end of the book, and I'm sure he talks about patients getting angry and fed up with TMS throughout his books. I think there is a feeling of self-empowerment in getting angry. It is justifiable, after all. If you found out your unconscious was the source of all your pain and forced you to give up your entire life (as happened to me), wouldn't you be pretty darn angry? I think it's only natural to have that feeling. If there's anything I learned from healing, it's that there's no point in suppressing any emotions, no matter how unfair or childish they seem. You might as well face them and deal with them. And it's not so much that I'm angry at "the child in me," but at the strategy being used. In Gabor Mate's book When the Body Says No, he discusses the empowering nature of healthy anger at the end, and differentiates it from rage, which is destructive. I think expressing healthy anger at your unconscious is very helpful in healing. At least for many people.
    zclesa likes this.
  9. zclesa

    zclesa Well known member

    @grapefruit. I'm about to read "When The Body Says No" funnily enough. I love Gabor Mate and know what the book is all about, having listened to many of his talks and lectures, but I think it would be good to actually read the whole thing with a highlighter in my hand, because it totally applies to me.

    Yes, perhaps there is something empowering in getting angry at symptoms. I think I struggle because the ID is, in fact, the baby within us. It is the first part of the brain to develop and is "us" before we learn rational thought, words etc. Since I was mistreated from the day I was born, I don't know if I should be yelling at my "baby part" - it's had enough of that. In Steve Ozanich's book, he says that he thinks he impeded his progress by doing too much pushing and getting angry and not enough "soothing the baby". He found that when he increased the self-soothing, he got better more quickly. So, I think it will depend on what our past is.

    I totally agree with being firm if necessary. I am going to have to re-parent myself entirely because of my past anyway. And I thought what I would have liked in a parent, rather than what I actually got, was an empathetic, loving parent, who was also firm, but not over-strict. My mother was the total opposite of that. That's another reason why I am wary of just yelling at something which has always been yelled at and shown no empathy. I think that part must be extremely angry and upset already.

    I think I need to direct my rage where it actually belongs more than shouting at the part which is angry and upset and wants its needs met for once. Note that this is very specific to me. Perhaps just getting angry will help many people. But I have already got angry, frustrated, depressed and upset about what my symptoms have taken from me. And that hasn't worked. ( have noticed that when I do acts of self-care and am mindful of doing it, my symptoms can disappear for half an hour. even just saying "I love you" to myself helps my eyes unblur for just a moment.

    It's all a journey, isn't it? I think everyone needs to find the right balance for them for true and complete healing to occur. I do not want to be TMSing all my life, which I have done since childhood, so I'm looking at this as not just getting rid of this one illness, but healing myself totally, as far as that is possible.
    BridgetE likes this.
  10. zclesa

    zclesa Well known member

    I'm just using this thread to post my journey and to remind myself what works and what doesn't as I am brain foggy and easily forget. So no need to respond, but feel free to chime in if you'd like.

    So I'm pretty proud of myself. I've gone two days without medication on a bender of a migraine, which I believe started from pushing myself far too much with activity and not doing enough calming work to balance that out. I have even been getting migraines in my sleep as I'm waking up with crease lines on my inner eyebrows - so I must have been tensing my face while asleep. No wonder I've woken up every day feeling so bad.

    So, I gave myself some R&R to try and break the migraine. I have been taking the amino acid L-Lysine, which has mild calmative properties, and is better than taking Valium (which I will try to avoid, but will take where absolutely necessary). I have been wearing sunglasses and I even told a couple of my friends who had texted me that I wouldn't be able to text back and forth with them as I had a migraine and needed R&R. This is good for me, as often I will reply even when I feel awful or I will ignore the texts totally, which makes me feel guilty. So this was a nice baby step towards setting boundaries, which I have been crap at all my life.

    I've been playing Thomas Hall's subliminal sessions from YouTube - first the one to reduce migraine pain, which actually made me sleep, which I have really struggled with when in "migraine mode". Then I moved onto his one to release anxiety - which is, after all, what is partly keeping the migraine going. It made sense to me to move onto the feeling side of things, rather than focusing on the pain specifically. After all, my migraine is not the problem. The fear is.

    Today I listened to Alan Gordon's podcast on Curable Health, which was great. He said that your pain level is a barometer of your fear level, so I wrote out a list of the things I felt fear about while having a migraine. Surprise, surprise. My main fears are of how I will look to others! I have been afraid of not being able to "perform", of feeling helpless and powerless and other people knowing that.

    He said about deconditioning yourself by facing the pain feeling safe or empowered instead of fearful. So I started making a list of things that make me feel safe (not much on that list so far!) And a list of things that make me feel empowered (luckily there are a few more of those). While I'm still struggling to get out of the migraine, I will be focusing on remembering how these things felt to "rewire my brain".By writing out and recalling these things, I am building my "safety and empowerment muscles". I even did couple of rounds of EFT for feeling safe and empowered despite the pin.

    For the first day since the 7-day migraine began, the actual pain has lessened although I still feel extremely foggy and dizzy. Result!
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  11. zclesa

    zclesa Well known member

    Wowser, what an extraordinary day so far. I woke up this morning and drank half a litre of water, then listened to Tom Hall's subliminal relax mediation while doing nothing at all. I have done everything mindfully today, checking my posture and releasing any tension, slowing myself down, and actually caring for myself.

    My default behaviour was: "Don't care for your body by drinking water. Drink coffee instead, and get busy. Immediately switch your computer on and check your emails, because other people's needs are more important than yours."

    I sounds like little stuff, but it's not. It's bloody marvellous considering the way I have treated myself in the past. And I've only taken one Lysine today, rather than the four I needed yesterday. And I've been able to take my sunglasses on and off today rather than wearing them all day. Still very dizzy and foggy, but no major headache so far today, and I am feeling more peaceful.

    I was also able to work on a memory and had a good old cry about it. I have never even "felt" anything about that memory before. I just knew it was what started my chronic illness. But I had no feelings about it. This is amazing. Thank you to all the wonderful people on this forum and for the people who started and contributed to the whole website. I am learning, learning, learning. I am truly grateful.
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  12. Jules

    Jules Well known member

    Zclesa, I can so relate to your story as I have had chronic pain for the last 21 years, with a myriad of other TMS issues (balance issues, anxiety, depression, etc.); and although my pain is so much better now, the symptom imperative is hard at work with nausea and IBS symptoms. I’ve been doing this work for about 6 years now and was hoping to be completely cured by now, but my personality is one of obsession, goodist, and perfectionist, so why would this be any different?

    Right now, as I’m typing, my bowels hate me. No other way to say it but they are angry. It seems about every few weeks for at least a few days, I get these attacks that hit me out of the blue. (nausea, loose bowels, abdominal and pelvic pain, cramps) I keep trying to find the trigger but alas it fails me. I get them whether I’m mad, sad, happy, excited, calm, etc. Of course, the fear of “maybe something is wrong” does creep in but I’m pretty sure this is TMS as this is a recurring problem I’ve had for many years. Sometimes, the pain is worse and other times, there’s none at all. I have a great job, very flexible, with a terrific manager and co-workers. I have had to take personal days though because the nausea gets so bad, I feel like vomiting, even though I never do. Weird huh?

    I think you’ve hit on a few things that have resonated with me in the past and that I tend to forget when TMS rears its ugly head. One: I tend to do it anyway and sometimes, that makes it worse, instead of better. In the past, it’s worked but I realize sometimes, I need to baby myself and soothe the fear. I think this is one of those times. For instance, my sister and niece was diagnosed with severe celiac’s and when I was over there getting my hair colored by my sister, she mentioned it to me and said I need to get tested because it was hereditary and I might have it. Well, of course TMS came slamming back after it had been for about 3 months.

    I don’t blame my sister for her care and concern but for a TMS’er, it just flares the fear and so of course, I feared my symptoms could very well be celiac’s. Oh goody. Seriously though, my sister had to redo her entire house to get rid of any gluten. She had to get new cabinets, counters, repaint, new flooring, etc., because gluten can be trapped in those surfaces and her celiac’s. I have tried not to focus on the what if’s, but it’s hard when people around you are suffering with real health issues and you start to go down that rabbit hole of “catastorphizing.”

    Alan Gordon and Nichole Sachs are great for TMS help and I have leaned on their wise words in the past, along with Sarno, Steve Ozanich, and many more. Just like you and so many other tms’ers, we focus so much on the healing that we become obsessed with the time-frame. I sometimes get frustrated because I wasn’t a book-cured TMS’er, and I still struggle after years of doing the work. But, I have learned many coping skills and have faith that one day, the cure will be complete. Let’s look for the light at the end of the tunnel instead of the darkness around us. :cool:

    Good luck!
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  13. zclesa

    zclesa Well known member

    Thanks for sharing @Jules. I'm sorry to hear about your sister and niece. It seems unlikely that you would only have symptoms every few weeks if you had Celiacs. And you don't just get IBS-type symptoms with that - there are other very clear symptoms which you haven't mentioned and you would have if that was an issue for you (don't go looking them up!). With anything hereditary, some in the family get it, others don't at all.

    I love your description of "angry bowels" - the very way you put that sounds like you need soothing, as you said. But really, it's very positive that you only had this for a few days every few weeks lately. That's a lot of time symptom-free. I'm still 24/7 with something or other Vestibular-related. So big congrats to you.

    I have a lot of stuff to go through to get to complete healing. That may happen quickly and it may happen slowly. But I know it'll only happen if I can use this my illness as a lesson. If I have learned anything through all the crappy stuff I've had in my life, I have learned that adversities are our greatest teachers if we're prepared to learn the lesson.

    So I am going to work on my personality a bit. I know people say this isn't necessary, but I don't want to have TMS all my life, and I don't want to be unhappy. So I'm willing to jettison some of it. I'm not going to stop being nice, but I am aiming to narrow the gap between how nice I am to others and how nice I am to myself. In the past, this has been a massive chasm. I love researching and learning, so I am going to focus my obsessive side on that rather than obsessing about anything else that doesn't serve me or anyone else.

    We can change our personalities, no matter what anyone else says. I know this because I have done it. If we have "learned" to be the people we are from our past, we can unlearn it and learn a different way. It's down to us if we want that. I don't want to change everything, but I'm willing to channel and change some of it to move onto my next stage of healing.

    Good luck to you too!
    BridgetE likes this.
  14. zclesa

    zclesa Well known member

    An interesting day so far. A lot of self-awareness gained. I set my alarm to make sure I got up in time to go to yoga (3rd week so far). I accidentally went back to sleep for an hour, and woke up thinking there wasn't time to get ready and go. But I still had about 35 minutes, and I really wanted to go as it always makes me feel better - for 45 minutes I am almost symptom-free and I feel more grounded and peaceful afterwards.

    So, my mind was in this dithering state, switching between "shall I try and get ready in time?" or "should I leave it?" I noted this and saw how I was wasting more time and I may as well just try my best to get ready and see if I could be on time for the bus. So that is what I did. I noticed while I was doing this, my mind was still thinking about stupid stuff like "Can I really wear this old socks?" Just before leaving, I wasn't sure whether to wear a coat or not. I put it on and took it off again twice before realising what I was doing.

    It's no wonder I have brain fog is it, if this what my mind is dong all the time? What a waste of time and energy. I actually feel greater clarity just typing this out. The brain fog is a little less.

    So, when I noticed what I was doing with the coat, I did what I will henceforth call "the Dr. Pepper move" and said "What's the worst that could happen either way?" Well, nothing really. I might feel a bit too cold or a bit too hot. No big deal. So I left the coat behind and caught the bus in time.

    Do not do the Dr Pepper move if you are a catastrophiser and always think of the worst outcome. Only do this if you can totally realistically realise that whatever it is really doesn't matter much at all. Nothing ever matters that much. We're born. We die. We do the best that we can inbetween. That is all that matters. While we might want things to be different, or be better than we are, we have to accept that doing our best is all we can do. I believe we can grow and do great things in the world - that is always my personal aim. But at the end of the day, my efforts at being better (whether that's striving, letting go and accepting, or finding a balance of the two), are more important than the actual outcome. Life really is a journey, not a destination.

    I had to wear sunglasses on the bus and distract myself from my migraine/brain fog/dizziness/anxiety. So I did a couple of distraction techniques and watched a quick video on my phone, which made me laugh. This was very helpful. Weirdly, when I got off the bus, my legs didn't want to work. Very heavy, almost like drop-foot. But I walked the 5 mins to the class and did my yoga and felt great. Until about 5 minutes from the end. I knocked my metal water bottle over and it clanged on the floor, and I had to apologise to everyone in the room. It broke my mindful state and I felt quite symptomatic again, although still better than before yoga.

    I left feeling a bit disappointed that I had broken that mindful state and become symptomatic, so I looked back at what happened. Not once, but twice, people's phones vibrated during the yoga and the teacher asked them to switch it to silent. These people didn't get worked up about it or apologise. They just went and got their phones and switched them off. And it didn't break my state. So, my response to doing something which was really not that bad anyway - probably not as bad as my phone going off - was a massive overreaction. After I'd noted this, I distracted myself and pictured the calming and empowering poses I had done during yoga. I kept that feeling with me while I was on the bus home and was able to continue the journey with more ease.

    When I got off the bus, my legs were weird again, but I went home to collect a card I needed to post for a friend's birthday, and went out again to and post the card. When I got back, my cleaner was waiting on the doorstep in the rain. Luckily, because I had been noticing my thoughts, I instantly realised I had only been gone a few minutes and my cleaner usually texts me to say when they'll be arriving and he hadn't. So, I did not apologise. I just said "I hope you haven't been waiting long. I just popped out." And then HE actually apologised to ME for not texting as his phone was broken. And everything was fine without me needing to apologise or ingratiate myself or whatever other unhelpful things I might have done in that situation in the past.

    I have taken no medication today. Not even calmative amino acids. Instead I have mindfully worked with my body and brain and had great results. So although I can't do "formal" mindfulness meditation practice at the moment, because of the brain fog, I can still notice what I'm doing and thinking, and change it. Thank you for letting me share my journey today. Grateful to have this forum.
    BridgetE likes this.
  15. zclesa

    zclesa Well known member

    Oh wow - Just did SEP day 6's "Things to Ponder" exercise, which was about writing down things you fear and why you fear them. It was not just something to ponder for me. It was a really valuable exercise, because if fear and anxiety is usually repressed rage (or other feelings), then this is worth looking at deeply.

    Practically ALL my fears lead back to two things: 1) Fear of showing weakness in any form 2) Fear of not being attended to if I do show weakness in any form. I can totally trace this back to my childhood.

    The behavioural aspect of this takes many forms. Although they fall under the umbrella of "goodism" and "perfectionism", they are not always that obvious and I haven't been able to understand them all and how they fit into this until now. Some of them include things like always having to be thin, which was not obvious to me before. But in practical terms, the cognitive and behavioural aspects all amount to avoiding the risk of 1) Letting people down (myself and others) 2) Being let down.

    My chronic illness, my insomnia, my self-sabotage, which I sometimes "do", are forms of avoiding the risk of these things. All of these things are a great way of retreating from the world because "I can't function in it" when I am weak/ill/tired.

    What is a total mindfrig, from a therapeutic POV, is that I have been excessively concerned that I have never been able to comfort my inner child, because "I am not strong enough" for her. If that doesn't get to the essence of this, I don't know what does. I have forced that "little girl" through a lifetime of never asking for help, being strong when everything is crumbling, drowning her cries to be heard in alcohol, and cutting her body. And then I have taught her - incorrectly - that "I have to be strong" to even comfort her, but I'm not, so I can't be there for her.

    No wonder she is so afraid, angry and sad - and I have behaved in a way that has just made her feel worse and worse. I have totally let her down and not attended to her - which is exactly what she fears the most. WOW! Just WOW! I have totally ignored her needs, just as my mother did mine. Even when I first got sick, I dosed myself up with meds each week and went to do charity work, helping others, all the while ignoring what she was trying to say to me.

    I often do not recognise what my/her needs actually are, from not knowing when I am hungry/thirsty to the deep emotional needs. This is something I will work on - listening to my body much more carefully. And when anyone (including ME) lets her down, I will express it safely before forgiving. I have always just skipped to the forgiveness part with other people or not recognised at all how I have let her down. And I will have to allow myself to "let others down", because I am not perfect and can't be there for everyone else. I am weak sometimes and that's OK.

    So, I apologised to "little me", and my arm started panging with pain - the arm with deep scars on it, where I cut off her cries repeatedly. So we have "cried together" about what mum "taught us" and how forced her through horrific experiences and totally let her down. As I am writing this out, my migraine pain is raging on and off. I understand that by posting this, I am letting us be weak and vulnerable, and "little me" doesn't quite get that that is OK yet. But that's OK too. It's a great signal from my body and I am listening. But by posting this, I am showing her it's OK to be this way. It is safe here and it's empowering for us to recognise what is going on and that she knows I'm trying to sort things out.

    Printing this out for my therapist next week. Thanks for letting me share. Off to do some soothing now.
    BridgetE likes this.
  16. zclesa

    zclesa Well known member

    Well, things have been very interesting. My pain has got very severe at times. And not only do I have more pain now, but also huge physical anxiety and insomnia.

    It is very different from back when I had my anxiety disorder. Back then, I would sweat and shake, and circle round the door twenty times before being able to go out. I ended up using alcohol to function at all back then, but I was still hugely anxious and would walk with my eyes pointed at my feet.

    Now, it is more like someone is strangling me, pressing on my throat so I can't breathe well. My legs sometimes also become heavy and a bit jellylike. Interestingly, there are not really many thoughts attached to this feeling. I guess this is the fear I have repressed for so long making itself known in full. I guess it wouldn't have many thoughts attached to it, because it was a more primal fear from infanthood. I was brought up from day 1 by someone who didn't make me feel safe. Of course, I never thought about it. I just felt it - as I am doing now.

    But it is all good. I have still managed to get to yoga every week. I am now doing Yoga Nidra to help my insomnia, which is great. I'm following the "Tripura Mandala" channel on YouTube for that and just doing between 1-3 exercises until I fall asleep.

    Yesterday's Hatha yoga was brilliant. I managed to maintain my mindful state the whole way through. It was a different teacher, so I had to tell her about my balance problems. She came up to me at the end and said that she hadn't noticed about my balance at all. So I actually told her it was a trauma-induced psychosomatic thing. It felt good to be able to trust a total stranger with that. I left feeling really happy and empowered, and didn't need my sunglasses to deal with the light for the rest of the day. I also used some music to help me on the bus. Not to distract, but to meet the present moment with some more joy. I literally sat on the bus having a little dance in my seat and felt free despite the overwhelming fear and dizziness I had earlier in the day.

    Counselling has been good. I've begun to see that I am just a load of programming, and not who I thought I was at all. At first, that was confusing and scary - then I realised, actually, if that's true, then I have a choice about who I become. That is very freeing. I think my problem is more repressed fear than anger to be honest. I'm not sure Jung was correct in thinking we are all raging IDs underneath it all. In my experience, anger always comes from fear - and not vice versa. But that is just my experience and observation, which doesn't mean it fits everyone.

    Other things that have helped me stay mindful, present (and reduced/eliminated symptoms): Gardening, walking with my other half, preparing food, and more music!! I still have to be careful to do one physical thing at a time to be fully engaged.

    Overall, I am becoming less fearful of the symptoms, less fearful of the fear, and generally more empowered and hopeful. I may still have more "down days", but right now - which is what matters - I am happy and making progress. Very grateful for finding TMS Wiki :) Thank you all.
    BridgetE likes this.
  17. zclesa

    zclesa Well known member

    I am finally understanding what people mean when they talk about "not caring" about the pain or illness as the way to recover. Ever since I found out that my illness is psychosomatic and caused by trauma, I have been extremely ill. I kept wanting answers and looking for information - very well, some of us have to go through that to realise the futility of it. We can only gain a certain amount of knowledge, then have to let that go as well.

    I have had 4 "good days" in a row by just not caring if I'm going to feel ill doing activities. I have been out every day, have managed to go shopping twice. and walked 25 minutes (the longest ever since my symptoms intensified). I just didn't care how I felt or looked or anything, and *poof* the symptoms disappeared. I still use music to centre myself if I find I am thinking about being symptomatic. I let it wash through me and find my other feelings for me. Otherwise, I just ignore the fear and the symptoms, and they go.

    I still haven't mastered this for non-physical activities, like sitting and reading a book. Seeing words blur and twist in front of my eyes is still too distracting. But that's OK. I know I will manage it if I can just keep going.

    People have mentioned reading Eckhart Tolle to help them. I listened to many of his YouTube videos, and then was waiting for things to happen if I just bore the pain. Haha! The waiting, the acting like a martyr bearing the pain in order to break free. Luckily I found an anti-guru called U.G. Krishnamurti on YouTube. I realised what I was doing was nonsense. All of it is nonsense, stuff of the ego. Then I started to not care. U.G. is not everyone's cup of tea - in fact, he's not anyone's, because he has no answers and isn't teaching anything. But from that, I am becoming free.

    There is a quotation that artist, sculptor, and general genius Michelangelo no doubt didn't say, but I am starting to love it. It goes something like this. "Making a sculpture is easy. I just get a block of marble and chip away everything that is not the sculpture." Indeed we become free, not by adding more, but by removing that which is not useful or true.

    Grateful for this forum!
    BridgetE likes this.
  18. zclesa

    zclesa Well known member

    I am so glad I started this thread for my story, because when I'm having a bad time, it is easy to forget what helps and how far I've come. It's also helpful when I'm doing well but not progressing as fast as I want to, to realise that I have progressed a great deal, and it will come in time. The difference between where I started and now is like night and day. I'm still not basking in glorious sunshine, but it is bright much of time ;)

    I am now going twice a week to yoga and have had one session where the entire trip on the bus, the during the whole of the yoga class, and on the bus back afterwards, I felt entirely OK as if I'd never been ill. I have managed to go for walks for over an hour and have passed into a zone where, after a while, I feel OK as well. I even went to the busiest part of this city on the tube and went shopping, something I haven't done since I was first ill! And all of this is with only using my music and emergency sunglasses most of the time, and very occasionally, painkillers.

    It seems the more "spontaneous" and less "over-planned" things I do, the more amazing the breakthroughs are. It's easier for me to do things having a rough idea of what I need to do rather than relying on my perfectionistic security behaviours of having to know exactly when and here and how things will happen. This has even helped with brain fog, amazingly. I thought not being sure of things and having to figure them out would worsen my brain fog, but I've started to rebuild an old broken website without too much difficulty when I'd left it in anticipation of it being too hard. Yesterday, I just thought I'd give it a stab, and it's been surprisingly uncomplicated.

    I also did what might be the biggest achievement so far. I visited my parents, which includes my Narcissist mother who started all this. I haven't been to their house since I got ill, seeing as my last visit was what kicked off my Vestibular Migraine. I went last weekend and unsurprisingly, the week before, my body tried to sabotage it. I was suffering a huge amount of fear, insomnia, and other psychosomatic symptoms. I did have to take meds to go there, but I managed not to sabotage myself at all during the visit. I talked to my mother like an adult and didn't let myself fall into infantilization, which she always tries to do. When she started belittling my dad, which raises my hackles enormously, I just put on my sunglasses and ignored it. When she became too much, I went out for a cigarette and went to bed when I'd had enough of it

    Obviously, I'd have preferred not to have had to have taken meds to do this, but it is still a huge step, and I hope I will get to a point where I don't need meds to see my mother. I was exhausted and slightly depressed the day we went home and for a couple of days afterwards, and am still having a few sugar and alcohol cravings but I understand it and am not bothered, and I will not act on them. I feel better now than I did, and will continue to get on with my life and progress.

    I think my last hurdle in all of this is self-sabotage. I have not given myself permission to achieve things past a certain point. This comes from how I was raised. I was allowed to succeed as a child, but never as an adult. The only time my mother appeared to show much love as an adult was when I failed.

    I now understand that my mother's behaviour is neither loving nor malicious. She's just a robot running a program to meet her needs. Therefore, I understand that anything that she has made me believe about myself is invalid. Her opinions do not matter. Quite frankly, the only reason we are still in contact is because she lives with my dad and I love him. Obviously, my body and "inner child" are not quite convinced. When I'm not sabotaging myself behaviourally, my body likes to step in for me with symptoms, but eventually it will learn that I am not giving in and it doesn't need to protect me.

    My biggest tools in this journey have changed from painkillers, adaptive behaviours, and meds to music, yoga (Hatha and Nidra), challenge, the philosophy of U. G. Krishnamurti, and my therapist helping me to become more self-aware. When I become aware, doing big things to challenge my old behaviours and beliefs, is what helps me progress. I am becoming more authentic all the time, which is wonderfully freeing.

    So next challenges: Recognising all self-sabotage and stopping it especially when I'm about to break though my "achievement ceiling", physically feeling proud of my achievements (my body doesn't feel it yet), dropping defensiveness, doing more new things, more spontaneity, recognising more conditioning and dropping it. More "big" challenges. Conversely, more patience with myself and my progress, and more joy and kindness to myself: I do need to stop only looking for "challenges" and measuring my progress by them and instead look for challenges I would LOVE to do, and do them. I was going to go a gig and try it without meds, but it got cancelled, but that's the sort of thing I need to be challenging myself toot just challenge for the sake of proving something, although that does have a place. We all need to shower and go shopping even if we don't love it! So perhaps my next thing is making a list of things I'd love to do :D

    Grateful for this forum and for all those who are part of my journey.
    BridgetE and Rainstorm B like this.
  19. zclesa

    zclesa Well known member

    Much to make a note of after my last therapy session.

    I'd picked up on the fact that I find it difficult to tell people what I want or need, even if I have every right to. I feel like I'm bothering them somehow. For example, my housemate has been short of the rent for a few months, so I was supposed to send him an email to let him know. He's a ditz, so I know it was an honest mistake and he'd have no problem with it. But I waited until 4 months had gone by, with many excuses "I'm too tired and brain foggy to check which months" etc. The truth was, when approaching people with my needs, I get a feeling of dread in my stomach, so I avoid or delay doing it.

    I did email him, despite the dread, but had to add extra information as a way of "softening" my entry into the topic, rather than simply stating "You underpaid a few months. Can I get the difference ASAP please." I know there is no rational reason for me doing this. I don't fear anything happening. It's just a habitual thing that soothes the dread a little.

    My therapist says I do this "adding excuses and extra information" a lot when talking with her and she'd wondered why. Through her eyes it came across as confusing, like, "Why is she telling me this? How is that relevant?" That was really interesting as it made me realise that this habit could potentially be counterproductive and cause negative responses.

    We noted that I do this with authority figures, like landlords. If they call me out of the blue, I don't answer. I wait for a bit and phone or text them back apologising. This comes down to a fear of being unprepared.

    I tried to figure this out where this came from when I realised I'd never been able to ask my mother for anything. I never ever asked her for things like most teens do, like shoes, clothes or money. My sister and I were made to go to bed hours before our friends, and we took two days of bargaining with each other over who would approach her and what reasonable explanation (extra information) we could use to persuade her without offending her.

    My parents divorced when I was 9. There was no "build-up" to the divorce, no rows, no real hostility. Our parents just sat us down one day and told us. And just like that, my only refuge from my mother (my dad) was out of reach. I was never even able to ask why they got divorced until last year (30 years later). And I asked my dad, as I could NEVER ask my mum. This was the thing with my mother. She shut me down so much that there was never a question of asking her for "extra things", such as reasonable explanations or pocket money. I could barely ask her for human rights and basic needs (like being treated fairly for my age or letting me see my dad without extreme guilt trips laid on me).

    I really didn't realise how powerful this has been in my life, but it explains my extreme awkwardness with stating wants, needs, or expressing preferences. If I do it at all, I have to always "soften it" by adding irrelevant stuff. Also the utter shock of divorce (with no explanation and no recourse to get one) explains why I have always felt so scared of uncertainty and need to plan everything. Of course this sort of thing wasn't just apparent in the divorce. The life my mother gave me was built on confusion, not understanding why, and never being able to ask why.

    I wasable to feel enough compassion for myself to actually cry about the horrible way I was brought up, which is a bit of a breakthrough. I must admit, I only just realised that my mother was not just strict or overprotective. She was actually abusive. Scaring and confusing a child into not being able to ask for basic needs to be met is abusive.

    I am not sure how I will start to get over this except reminding myself that no-one else in my life is my mother. Most people are reasonable and I don't need to "arm myself" with preparation, excuses, or extra information in order to deal with them. And reminding myself too that this habit could be counterproductive. Perhaps I will do some NLP on it when I'm less brain foggy. For now. it's good to finally be aware of it and where it came from.
    BridgetE likes this.
  20. Mark1122

    Mark1122 Well known member

    I am no professional and just thinking out loud. I think indeed noticing it is the best first step and the only first step. We can only change when we notice these things first. And after that you have to want to change. Now i think when you got these 2 down you have to start small and get positive feedback for the little new behavior your teaching yourself and i think it can snowball from there in a loop of positive feedback. But you will have to work on it and at the same time not pressure yourself too much. If it didn't go right the first time its okay you can try again. And i believe you will start to notice positive reactions when you exercise the new behavior and that key in the change, notice the positives and don't dwell on the negatives when trying out the new behavior.

    I hope it makes sense, this is just how i think about it, good luck. And good job on noticing and wanting to change as they are the hardest and most crucial steps for the change to happen!
    zclesa likes this.

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